CD's Ear Blog

Got some tentative dates for the CI

2011-11-08T11:38:00.000-07:00

Got an email from the surgery/appointments coordinator at the CI Center with the tentative dates for CI surgery.

Follow up appointment- 2/24/12 @ 10:45
Pre Op- 3/13/12 @ 11:30
Pre admissions- 3/13/12 @ 1:00
Surgery- 3/14/12 @ 7:30 (Check in would be at 6:00 am)
Post Op- 3/29/12 @ 10:45 am
Activation- 3/29/12 @ 8:30 am

Am seriously hoping I can stick to these dates, but of course have to double-check and such, make sure they work out.

Did I just hear 'principal punch'?

2011-10-12T13:12:00.000-06:00

Had a quick hearing test with the CI audiologist today. She was making her trip through Wyoming to meet with clients for mappings and such, and agreed to do a quick hearing test with me. Originally I was to go to Cheyenne tomorrow, but then I found out she was coming HERE the day before. So I went to the special education services building and was directed to the audiology office. The school audiologist is excited that I'm working on getting the implant. He made a copy of my Medicare and Medicaid cards for the CI audiologist since she wanted to take the copy back to her office to add to my file. The CI audie and I went into the soundbooth. Took her a few minutes to get her laptop up and running. She pulled up a program and we got started. It was just a quick test, not a full-out test with beeps and tones. Just sentences. And these were difficult sentences, oh my goodness! And there were different voices being used too (male and female). I understood the female voices better than the male's for the most part. I got maybe 2 full sentences right on, but all the rest were a bunch of mumble-mumble-WORD-mumble blah blah blah blah what?

One sentence said something about personal touch like "I'm going to add some personal touch" or something like that. I could've swore it said "principal punch." Anyway, we did 2 different rounds of sentences. First round, I got 7%, second round, 21%. Well, I definitely meet Medicare's criteria for cochlear implant coverage! CI Audie and I talked some more, trying to work out a plan of some sorts. We're going to shoot for a March/April surgery date for the cochlear implant. I'd rather do it sooner, but I'd have to travel to Denver, and with the holidays and winter coming up, I decided it'd be better to wait until early Spring.

When the audie gets back to Denver, she'll speak with the surgeon and see if we can schedule the initial visit with the surgeon and the pre-op into one appointment, so I wouldn't have to make two separate trips. She also mentioned she was planning to come back here sometime in April, so if we could do the surgery in March, then I could see the audie when she comes here for activation. It would be great if this happened, but we'll see what happens.

My Medicare coverage starts up next month, and they will cover 80% of the implant, and Wyoming Medicaid will cover the remaining 20%. Late last week, the audie had heard that Medicaid wasn't covering implants for adults anymore, but that applies to Colorado. Wyoming Medicaid is still covering them (I confirmed this via email with someone from Wyoming Medicaid's office on Monday and got the update "covered services" manual as well). Seems like everything's all falling into place for me, finally. I've been working at this for years, since I was in high school. I'm glad I can finally progress with the implant. I'm still going to do the left ear alone, and I'm definitely choosing Advanced Bionic's device as well. Hopefully by spring next year the new Neptune processor will be available. Audie told me I should be able to get 2 processors, so if that's the case, I'd like to have the Harmony for everyday general use, and the Neptune for back up and for being in wet situations (I do have some very young nephews who do like to splash and squirt water guns).

Audie told me I should be hearing from someone from the CI Center's office within the next few days or so, to get things more set in stone/planned out basically.

And now for hearing aid stuff... I see my hearing aid audie later this afternoon to have a new earmold made for the right ear. I don't think the current earmold fits as well anymore. Been more than a year, so it's about time for a new one anyway. Should be fun! Two different audiologists in one day.

Advanced Bionics back on the market in the US

2011-09-13T12:25:00.001-06:00

Advanced Bionics Announces FDA Approval For U.S. Market Re-Entry Of The HiRes 90K Cochlear Implant

-- Distribution of HiRes 90K Cochlear Implants in the United States Now Under Way --

VALENCIA, Calif., September 13, 2011 – Advanced Bionics (AB), the only U.S.-based manufacturer of cochlear implants and a subsidiary of Switzerland-based Sonova, announced today the approval of the FDA for immediate market re-entry of the HiRes 90K cochlear implant in the United States. In recent months, Advanced Bionics received approval from several other regulatory agencies, including Health Canada and the European Notified Body, TÜV, to resume distribution of the HiRes 90K implant to Canada and countries accepting the CE Mark.

“Everyone at AB and Sonova is excited that we are back on the market globally. We stand by our commitment to putting patients first and delivering high-quality products for the best possible hearing experience,” said Hansjuerg Emch, Group Vice President Medical of the Sonova Group. “The support we have received across the industry for our integrity has been incredible.”

AB’s first priority is the safety and well-being of patients, which is why it instituted a voluntary recall in November 2010 after becoming aware of a rare issue with the HiRes 90K cochlear implant. Of the more than 28,000 implanted HiRes 90K devices, only two (0.007%) explanted devices were confirmed to have this issue. In the months since the recall was instituted, AB implemented changes to its manufacturing process to ensure that there is no effect on the safety or efficacy of the HiRes 90K cochlear implant.

While off the market, AB actively continued all research and development projects that were under way prior to the recall.

“Our upcoming launches and products currently in development will continue to lead the industry and help our patients hear their best and live a fulfilled life,” said Dr. Gerhard Roehrlein, CEO and CTO of Advanced Bionics, LLC.

About Advanced Bionics

Advanced Bionics is a global leader in developing the most advanced cochlear implant systems in the world. Founded in 1993 and working with Phonak under the Sonova Group since 2009,

AB develops cutting-edge cochlear implant technology that restores hearing to the deaf and allows recipients to hear their best.

With sales in over 50 countries and a proven track record for developing high-performing, state- of-the-art products, AB’s talented group of technologists and professionals from all over the world are driven to succeed, work with integrity and stay firmly committed to quality.

To learn more about AB and its revolutionary cochlear implant technology, please visitwww.advancedbionics.com.

Media Contact:

Cheryl Garma

Advanced Bionics, LLC

661.362.1400

MediaInquiries@AdvancedBionics.com

Voluntary Recall Notification for Nucleus CI500 cochlear implant range

2011-09-11T19:18:00.001-06:00

Voluntary Recall Notification for Nucleus CI500 cochlear implant range

Cochlear Limited is undertaking a voluntary recall of the unimplanted Cochlear Nucleus CI500 cochlear implant range.
While less than 1% of CI512 implants have failed since launch in 2009 , Cochlear has identified a recent increase in the number of Nucleus CI512 implant failures. In an abundance of caution and with our recipients in mind, Cochlear has issued a voluntary recall of the Nucleus CI500 range of cochlear implants while it further investigates the issue.
No implants outside the Cochlear Nucleus CI500 range are affected by this voluntary recall including Nucleus Freedom implants which remain available.
The Nucleus 5 external devices (Nucleus CP810 Sound Processor) and any previous generation sound processors are not affected by this recall.
It is important to note that all existing Nucleus CI512 implant recipients can continue to use their system as normal.
If a Nucleus CI512 failure occurs, the implant safely shuts down. In the event of a failure, recipients can be re-implanted with the Nucleus Freedom implant range which remains available. Nucleus Freedom is fully compatible with the Nucleus 5 Sound Processor System which is not affected by this recall.
For people considering a cochlear implant, Cochlear recommends the use of the Nucleus Freedom range of Cochlear implants which are fully compatible with the Nucleus 5 sound processor system. This combination of Nucleus Freedom and Nucleus 5 sound processor system does not sacrifice any of the performance benefits of the Nucleus 5 processor system.
For more than 25 years, cochlear implant reliability has been of paramount importance to Cochlear, and we remain committed to providing high quality, high reliable cochlear implant systems.
We sincerely apologise for any concern this causes. I f you have any questions regarding this please do not hesitate in contacting your local Cochlear office.

Cochlear shares plummet on product recall

2011-09-11T19:14:00.004-06:00

Cochlear shares plummet on product recall

Eli Greenblat
September 12, 2011 - 10:29AM
Shares in bionic ear implant company Cochlear fell 17 per cent in early trade after the global leader in hearing technology announced a voluntary recall of its unimplanted CI500 Cochlear range.
Shares were down as much as $19.41, or 27 per cent, to $52.77. They were recently 18 per cent lower at $60.00.
The Sydney-based company said in an announcement to the Australian Stock Exchange that it had begun notifying healthcare professionals and regulatory authorities about the recall.
Cochlear said the financial impact of the recall was difficult to forecast at this stage.
Cochlear said in its announcement that all existing recipients with a Nucleus C1500 series implant can continue to use their system as normal.
Cochlear said less than 1 per cent of CI512 implants had failed since its launch in 2009, but that it had identified a recent increase in the number of Nucleus CI512 implant failures.
To be cautious the company had decided to recall the Nucleus CI500 range of implants while it investigates the cause of the problem.
Cochlear has implanted its bionic ear device in more than 250,000 people over the past 30 years and the company has managed to dodge the types of problems that have led many of its competitors to recall their own devices due to health-related problems linked to the devices.
Over the past 10 years its key rivals in the United States were forced onto the sidelines due to problems with their own devices, handing Cochlear a clear run to capture a bulk of the North American market. The last time a rival of Cochlear was forced out of the market the Australian company boosted its market share well above 75 per cent.
The affected CI500 implant range includes the Nucleus CI512 implant plus the following implants which are only available in limited markets - Nucleus CI513, Nucleus CI551 double array implant and Nucleus ABI 541 Auditory Brainstem Implant.
Its Nucleus 5 external device range and any other previous generation externals are not subject to this recall.
More than 10 years ago Cochlear was the target of a US Department of Justice investigation into payments made to physicians and providers. No charges were ever brought against Cochlear or any of its executives.
The company recently unveiled a full-year profit of $180.11 million, up 16 per cent, as revenue increased 10 per cent to $809.6 million.
Continued technological innovation has helped Cochlear maintain its dominant market share in the implant industry, with its Nucleus range of implants touted as the next generation series of devices that would help Cochlear stay ahead of its competitors as well as encouraging greater take-up rates among doctors and patients.

egreenblat@theage.com.au

Purple VRS

2011-05-31T18:36:00.001-06:00

And I am now an owner of a Purple VRS phone number. Whaaaaat? I didn’t even know you could download the P3 software to any computer with a webcam and use it to make relay calls or video calls (I knew they had their own Purple Netbooks they were offering/selling). Cool! Don’t have a webcam on the desktop, only on the netbook. A deaf friend suggested I download P3, as she needed to ask me something about photo but she couldn’t explain it. But hey, at least it’s free so why not. So I have an i711 Relay personal number (which I’ve had for 2-3 years now), and now a Purple VRS phone number (and you can make IP-Relay calls through the P3 software too!). Hm! So now I've got 2 different options for making relay calls.

Oh and I just now discovered the Blackberry has applications to make relay calls with too. Usually I just use AIM instant messenger to make my calls with i711. At least with AIM, my AIM name is connected to my i711.com account, so I can just say "audiology" and they'll dial the number for audiology and connect me, I don't have to type in a number! I couldn't do that with the i711 relay application on the Sidekicks. Don't know how it will work on the Blackberry but couldn't hurt to try it out I guess.... maybe. Gotta read the reviews of the apps first.

New Advanced Bionics device coming

2011-05-17T14:03:00.002-06:00

So Advanced Bionics has a new processor coming out, huh? The Neptune. Someone over in Europe attended a conference and found out a bit about the new device. That person also scanned and uploaded the brochure for the new device as well. Check it out! http://www.mediafire.com/?5swv2zy4wwn60tr (XPS) or http://www.mediafire.com/?0mr216dvmxw0vfc (PDF).

Looks like a pretty neat processor, and you can go swimming with it on! Neat! You don't even have anything on your ear. There's the coil, then the processor is a small body worn processor. From what I've read on the HearingJourney.com forums, the Neptune is due to be released in Europe in September. As for the US, who knows, since the FDA has to approve of these things. They still need to re-approve AB's implants first. But I do think this is real exciting for Advanced Bionics!

Supero is a weird hearing aid

2011-05-13T14:44:00.000-06:00

I've not been wearing the Supero hearing aid in my left ear much for the last few months. Mostly, it just sits in the Dry and Store. I thought maybe there was something wrong with it, that it wasn't working properly. But when I tried it out on my right ear over the weekend, no problems! Until, oops my hair brushed against the mic on the Supero, and book bye bye. Oh duh! How did I forget the Supero would frequently cut off due to hair or static electricity messing with it? Even when I first got it in May 2004, I had this issue. Of course, then, it didn't happen as frequently. And it usually gets worse when there's moisture. But even after sitting in the Dry and Store overnight, it'd still cut off frequently. It's kind of pointless for me to keep wearing the Supero in the left ear, if it's going to frequently cut off without my noticing anything for hours (since I can't hear anything at all whether or not the hearing is actually working). The point of the hearing aid in the left ear is to keep the ear simulated for the cochlear implant, but it sure isn't going to get any simulation with a hearing aid that's been cut off.

I am going to stop by audiology after work and the assistant will take a look and see if something can be done about it. I do recall the Supero having been sent in once last year for repairs, had some components replaced, new casing... Ah I don't know. I just don't get the Supero at all! I've not had this issue at all with the Naida! I think even my friend who wears Superos have had the same issue from time to time too. If the issue can't be resolved with my Supero, I'm just going to go find my old analog purple hearing aid, and wear that for simulation purposes. At least then I'd know it won't be cutting off on me, just need to be careful with the volume wheel as sometimes it'll turn up or down very easily on its own. Only con with that would be I'd have to keep some size 13 batteries on hand (easier to have both hearing aids using 675's, so I'm not having to buy 2 different size batteries). We'll see what happens I suppose.

Also, I recently switched my wireless phone service from T-Mobile to AT&T. I wasn't at all that impressed with the new Android Sidekick that T-Mobile has released. From watching the demo videos that popped up online, I just didn't quite like how the menu was set up on it, etc. I spent about two weeks last month internet relay calling AT&T and Verizon, using their online customer support chat, and visiting the stores at the mall, getting information, comparing devices and prices, etc. Everyday I would keep checking the status of AT&T taking over Alltel in Wyoming, and checking different devices on both Verizon's and AT&T's websites. I went into the Verizon store a few times to play with their different phones. Then when AT&T finally arrived, I played with their phones too.

The Blackberry Torch from AT&T grabbed my attention. QWERTY keyboard, touch screen, nice size screen, decent camera (5 mp; the other Blackberry's cameras were 2 or 3 mp's). I was just really impressed with it. That was that, I decided I was getting the Torch! So I ordered it online, requested to have my number switched over from T-Mobile. Free overnight shipping, activation fee waived, I only paid about $52. Then on April 20, I activated the Blackberry (the same day my contract with T-Mobile expired), filled out the application for the TAP plan and a doctor from the audiology's office signed off on it. I faxed in the application and within two or three days, I was switched over to the 200MB TAP plan. Awesome! The whole switching over, activating, etc. processes, they were all easy and smooth going. I've not had any problems at all. I'm still getting used to the different QWERTY set up (the QWERTY on the sidekicks is more similar to the full keyboard on the keyboard, but on the Blackberry, everything's squished together into 4 rows). I still frequently forget to hit the alt key if I want to use a number or punctuation. But I'll get more used to it as I keep using it. And the camera on it is great! It even has different settings/programmings for different situations, which is pretty neat. Sending photos via text messaging or to Facebook/Twitter/etc., much faster than on the Sidekick. I am extremely happy so far.

Have been going to physical therapy once a week for my headache issues. I've been having a lot of tension headaches in the last year (lasting weeks, even months at a time without a break). The therapy is helping a bit, and it helps that I've been drinking more water too. Therapist put me on the NeuroCom once, to get an idea of what my balance was like and that sort of thing. Found out I have a vestibular dysfunction, but that's no surprise at all, considering I had meningitis when I was 2 (and with my deafness and vision issues, all that combined can cause problems with the vestibular system).. And doctors told my parents I'd have issues with my balance for life. This week, we worked on my balance, and he gave me a few balance exercises to do at home. He's going to put me back on the NeuroCom next week, see if my balance has improved any. Hopefully it will have improved somewhat, if I keep working on my balance exercises at home.

And now, I shall quit rambling for the time being. Got things to work on/do/etc.

Meningitis deaths prompt CDC to recommend vaccine for teens

2011-01-30T19:40:00.000-07:00

Meningitis deaths prompt CDC to recommend vaccine for teens

WY meningitis vaccine bill moves forward

2011-01-30T19:22:00.002-07:00

ROOSEVELT HIGH STUDENTS WROTE LEGISLATION
Meningitis vaccine bill moves forward
Roosevelt High School senior Sierra Sterling, 17, testifies in Casper via video hook-up to the state Senate Labor, Health, and Social Services Committee on Wednesday morning. The committee voted unanimously to pass a bill written by Roosevelt students that would require Wyoming children to be vaccinated for meningitis. (Tim Kupsick/Star-Tribune)
Related Stories
Lawmakers will consider meningitis vaccination requirement
A bill that would require Wyoming children to receive meningitis vaccinations cleared a legislative committee Wednesday.
The vaccinations would protect against bacterial meningitis, an inflammation of the membranes that cover the brain and spinal cord. The disease can be fatal and is more common among young adults.
State health officials already have the authority to make meningitis vaccinations mandatory. But they don't have the money to fund such a requirement. The legislation would provide for $335,000 annually to pay for the vaccinations, which cost about $80 a dose.
Students at Roosevelt High School in Casper wrote the legislation. They watched via live video hookup as the Senate Labor, Health and Social Services Committee unanimously voted in favor of the bill.
Senior Sierra Sterling told lawmakers the students decided to get involved after hearing the story of a Colorado college student who died shortly after contracting the disease.
Funding the program would protect future generations of students, Sterling said.
"Who could put a price on a loved one?" she asked the committee.
Wyoming now offers the bacterial meningitis vaccine to children for a minimal administration fee. Last year, 3,400 children received the vaccine, State Health Officer Dr. Brent Sherard told the committee.
Making the vaccine mandatory would boost immunization rates, Sherard said. Among the state's adolescents, vaccination rates for meningitis are considerably lower than rates for the DTaP vaccine that protects against diphtheria, tetanus and whooping cough, according to figures from the National Immunization Survey. The DTaP vaccine is mandatory.
Under the bill approved by the committee, children would have to reach a certain age before they are required to receive the meningitis vaccination. Phasing in the vaccine over several years will be less expensive than immunizing all children at once.
Vaccinating all children between 11 and 18 during a single year would cost the state $2.3 million, according to a state Health Department estimate.
The legislation, which now heads to the Senate Appropriations Committee, does not specify at what age children will be required to be vaccinated. The Health Department would make that decision if the bill becomes law.
Bacterial meningitis can kill within hours of a person feeling ill. Its symptoms -- fever, headache and a stiff neck -- initially mimic less serious illnesses, said Sen. Bill Landen, R-Casper, who sponsored the legislation.
"Frankly, it is one of the most feared infectious diseases we have," he said.
Meningitis is contagious and people in community settings, like college dormitories, are at increased risk of being infected. That fact hit home with the students who wrote the bill, Sterling said following the vote.
"It is scary you could get this disease and not even 24 hours later you could be dead," she said.
SOURCE: http://trib.com/news/local/d2c717b5-a40d-5c89-b692-e291581d031b.html

I am completely supportive of this bill, and I do hope it passes. Meningococcal meningitis is very scary stuff. I didn't have this type (I had HIB meningitis), but I have seen the effects it's had on people of all ages. It is a very debilitating disease, and even deadly. Brain damage, hearing loss, loss of limbs, heavy scarring, life-long medical problems, etc. Get vaccinated!

Earmolds

2010-12-21T13:51:00.003-07:00

The earmold I got back in Feb/March.... welllllll it split wide open right at the hole where the tubing goes into the earmold. Oh great. So I made an appointment to have a new earmold impression made, and wore an old earmold that must've been around 5 years old. It was pretty hard too, but I didn't experience feedbacking from the hearing aid with it. Got the earmold impression made...

Week and half later, the audiologist's assistant called and left me a message, saying to call her back. I tried to call back several times with the i711 Relay service, but got a "line is busy" response every time. What?! I was able to get through a couple days later. Yep, earmold is ready, so stop by Friday or Monday and she'll fit it. Of course, I couldn't go last Friday, as my car door wouldn't stay shut. By yesterday though, door was staying shut, my battery had been charged up and I could get my car running again, so I ran over to the audie's office to get the earmold. Yay! This time it's a Westone earmold, not Unitron.

From there, I went to work and switched back to the old earmold, as the new one was already hurting the top of my ear in the crook. I forgot to mention to the assistant to leave the top part off the earmold when the impression was made. But I remembered I had a Dremel tool at home, so when I got home yesterday evening, I used the Dremel and filed the top of the earmold down a bit. Now it fits better in my ear, doesn't hurt. I'm very happy now. I've used nail files in the past to file down the top of the earmold, but the Dremel tool is so much more quicker! I originally got the Dremel tool to use to file down my dog's claws, but he absolutely refuses to let me get near him with the Dremel, so it's been sitting around collecting dust for several months. Was glad to finally get an actual use out of the Dremel.

iCom and telecoil

2010-09-19T22:40:00.004-06:00

Got to play with telecoil over the weekend. Works great! And there is far less buzzing/electrical interference with telecoil on while I'm near a computer. I pretty much have to put my ear right next to the computer to even hear the buzzing, so that's a big improvement from the Supero.

Tried out the iCom tonight for the first time. It works well for listening to music on the ipod or computer. But will I actually get one for myself? I have no idea. It's an accessory, Medicaid wouldn't cover it, so I'd have to come up with about $300 for the iCom. I'll keep trying it out, but so far I'm thinking I'll just stick with Telecoil, since I already have the MusicLink, and I also still have my neckloop for backup (for use on the computer, the plug-in jack is different on the neckloop so it won't plug into my ipod).

I have noticed that I do have to turn up the volume on the computer or ipod more with the icom. With tcoil, the volume setting is pretty low and I can hear the music just fine, lower than with the Supero.

Naida/Supero, captions

2010-09-16T13:58:00.005-06:00

Had an audiology appointment today at 11:30. Audie fitted the new earmold for my left ear, attached it to my Supero hearing aid, and hey no feedback! Awesome. But it sure feels odd to have a hearing aid in the left ear. It's been so long, it just feels weird. And I can feel the earmold vibrating in my ear too. I had to turn the volume down on the Supero to reduce the earmold vibrating. I'm pretty sure I'm not going to be hearing anything with the left ear, but we want to keep the auditory nerve simulated.

Also made a few adjustments to the Naida. Brought up the level on the SoundRelax feature to moderate (was on low before), so will see how that works now. Also put in a program for Speech in Noise, and modified it so the background noise would be reduced so I could hear speech in front of me (I asked about ZoomControl, and she had to call Phonak. Turns out one would need 2 Naida IXs for the ZoomControl feature, but she was able to modify the Speech in Noise so it'd be similar to the ZoomControl). Also had her turn on Telecoil on the hearing aid too, so when I get home I'll experiment with the MusicLink from TecEar and the ipod. She took the EasyPhone programming off, since I don't even use a phone, and put Telecoil in the EasyPhone spot, to see if putting the MusicLink to my ear will cause my hearing aid to switch to the Tcoil automatically. If not, no big deal.

She also loaned me the iCom to try out, as well. I'll definitely be doing some "experimenting" over the next 3 weeks with the Telecoil and iCom functions, and see which works best for me.

I'm quite happy with the Naida IX. Definitely a much better progress this time of adapting to it. No glitches or any of the problems like I experienced the V 2 years ago. I still continue to pick up on more sounds here and there.

Also, in the last few weeks, I've emailed the CW station about the lack of captions on their channel on my TV. I wasn't sure if it was the local CW channel doing that, or if it was a problem with the cable or what was going on. After chatting with Bresnan cable, I was able to turn on the Subtitles option on the cable box. But that still didn't do anything. CW channel was still captionless. So I asked some of my friends on Facebook if they got captions or not. One said no, and another said yes. I had the 2nd friend send me pictures of her cable box, to see if it was different. Indeed, she had a different box, the newer Pace box. After relay-calling Bresnan, they sent a tech guy out. I mentioned that my friend had the Pace box and got the captions, and he said he noticed that difference too. The older Motorola box just doesn't pick up the captions for the CW channel for some reason (which is odd, since the captions work fine on most other channels). But he took the old Motorola box out, and hooked up the new Pace box, and now the captions work great! Awesome. Now I should be able to enjoy watching Supernatural and Smallville once again. Of course, I need to get caught up, which I'll do at some point. I'm just happy to finally have captions for the CW channel again.

Naida IX UP

2010-08-24T11:28:00.003-06:00

Got the nice new RED Naida IX. so far not bad. Just very basic right now. Have another appointment for Sept. 16. Audie doesn't think Medicaid will cover icom but she'll call Phonak and find out. Will have to try the hearing aid in different situations and figure out what adjustments need to be made. Also new earmold impression made for the left ear, 3/4 shell (half shell wasn't good enough, Supero hearing aid feedbacks like CRAZY). Audie is also going to get a NoahPro set up on her computer so she can adjust the Supero and reduce feedback on it.

Been hearing random things when I got back to my apartment. My dog had 2 tags on his collar (1 for rabies vaccination, the other is ID tag), but I had to take the ID tag off so the tags wouldn't "clink" (I need to get him a new ID tag with updated info anyway). I heard the clinking with the Supero, but it wasn't too bad. But now, whoa buddy he's so NOISY! I'm about ready to take all the squeakers out of his toys too! And I've kept hearing this buzzing going on, I think it was coming from outside. Not sure what it was... maybe traffic? or lawn mowing (although the lawn mowing was done yesterday) or plane? I have no idea. I think it's cars passing by.

MusicLink issues

2010-08-17T13:28:00.003-06:00

And already I've got issues with the TecEar NoizFree music link. Great. I think the wiring connection has gotten a bit loose. I have to play with the cord a bit to get the best results for listening to music, but I move in the slightest bit, the connection disappears. Definitely not too happy with this right now. I'll have to speak with my audie on Tuesday and see if there's something else I could use to listen to music on my ipod. I don't want to have to keep buying the Hatis Epic or the TecEar NoizFree every time the old one breaks. Seems like no matter what I do, I'm somehow rough with both device (although the Hatis Epic will last me about a year so I get a longer use out of it).

I have used Phonak's FM unit in the past for listening to music, but I quit using it when the FM transmitter kept breaking so often (I got this transmitter back in Jan. 2001 when I got the Claro hearing aid). It's an older transmitter, one which Phonak doesn't make/sell anymore. And buying a whole new unit would just cost more money that I don't have. Maybe I could try using DAI or something. I don't know, but I'll have to discuss this with the audie and see if we can figure something out. Or maybe the icom? I don't even know.

Word of Hope Deaf School

2010-08-13T18:20:00.003-06:00

I haven't had much luck with my Hearing Aids for Africa project. But that's ok, I tried. And I'm still trying. But I also learned that the African Hope Initiative is trying to raise $40,000 by October. That money will be used to purchase hearing aids and provide education for the deaf kids in Burkina Faso. The African Hope Initiative will be flying out to Burkina in November to provide the hearing aids and funds.

You can donate money directly to:
African Hope Initiative
P.O. Box 631324
Littleton, CO 80163-1324

or online at http://africanhopeinitiative.org/contribute/

For more info, check out this blog entry.

Also, here's a video about the Word of Hope Deaf School.

Today's Appointment

2010-07-21T12:32:00.003-06:00

Today I got to meet the new audiologist at the office, since the previous one left to help a relative out for a while. Don't know how long he'll be out, but I was really pleased with the new audie. She's extremely nice, has a husband that wears hearing aids, yeah. She read some of the notes in my file and noticed that I was working on getting a cochlear implant. When she saw that, she got on me for not having a hearing aid on in the left ear for stimulation purposes. She made an earmold impression of the left ear so I can get a mold and start using my analog again later on. We also discussed different power hearing aids, and she's placed an order for a Phonak Naida IX UP, red transparency. Oooo. She tried to hook up my Supero to the computer to make adjustments to it, but alas, she doesn't have the cable cord so the adjustment didn't happen. But overall, I was really pleased with today's appointment! I think I'll be happy with her. Have an appointment for ... I think it was Aug. 24... erm, I have the appointment card at home on my fridge. Since she's the only audie in the whole office, and she's taking on the previous audie's clients, she's rather busy these days, but what else can I do? Last I checked, there weren't any other local audiologists that accept Medicaid.

It seemed like she was familiar enough with how Phonak's newer hearing aids function, and of how to program them... I brought up that I had tried the Naida V a couple years back and that it was so full of problems I wasn't happy then. She said part of it was probably because of the compression feature. Hm!

Noizfree, hearing aid trial

2010-06-28T15:13:00.004-06:00

Late last week, I finally broke down and ordered the NoiZfree iNoiZ music and audio t-coil induction earhook/silhouette directly from tecear.com, since the my Hatis Epic silhouette isn't working as well anymore (wiring once again broke or wore out inside the cord). Why I went with NoiZfree instead of Hatis this time? NoiZfree is cheaper. I received it in the mail today and immediately plugged it into my ipod to give it a try. Yes, I do have to play with it a bit more to find the "right" spot behind the ear for the hearing aid to pick up on sounds going through it via t-coil... but hey, it works! I'm happy with it so far. And the cord is coiled on the NoiZfree, which is great. The cord was far too long on the Hatis (if completely unwound, the cord would reach the floor with the silhouette behind my ear). I'm definitely liking the coiled cord on NoiZfree. Actually, at first, I ordered the Music Link from TecEar, but then I found the NoiZfree music one, so I emailed TecEar's customer support and ask them if my original order could be changed to the NoiZfree (they both are the same price). I don't know if there is much difference between NoiZfree and Music Link, I don't even know if MusicLink has a coiled cord like NoiZfree does. Anyway, TecEar were able to change my order, no problem. And the shipping is quite fast too. I could have ordered this from Harris Communications, but they charge an extra $10, and since I'm trying to save my money as much as I can, it made more sense to order directly from TecEar.

The trial with the Sumo has gone well for the most part. Except, whenever I wanted to listen to music, I've used the Supero instead. I really do not like the loud buzzing interference with the Sumo's t-coil setting when near electronics. But other than that, the Sumo isn't a bad hearing aid. It works well. I've even worn it to Walmart to see how it did in noise, but I don't know if there was much difference between the Sumo and Supero... With Supero I could switch to the NoiseAdapt setting and that brought down the background noise... I don't know. But tomorrow I'll start trialing a Naida IX, so we'll see how that goes.

Oticon Sumo: Day 1

2010-06-22T22:38:00.003-06:00

Day 1 of the Oticon Sumo DM hearing aid trial. So far, not too bad. Mom thinks I'm doing better with the Sumo, I'm responding more and not asking her to repeat as often as I did with the Supero. Definitely don't care for the telecoil on the Sumo when I'm close to electronics/computers, the buzzing is louder and more noticeable than the Supero's (and even more obnoxious sounding in the car!). Although, having a T+M setting is nice, but surely the Supero could be programmed to have T+M.... But yeah. I think I have been picking up a bit more without having to lipread with the Sumo than I did with the Supero. But sound-quality wise, I'm not really noticing much of a difference. Well, tonight when I was at Mom's house, she was tapping her fingers on the remote (a habit of hers), and I was REALLY hearing it. I've heard the tapping with the Supero too, but I'm not sure if it was louder with the Sumo or not.

I still think music sounds better with the Supero, with the telecoil setting. Volume is just right on. With the Sumo, I think the hearing aid was trying to suppress the volume from my ipod, so the music just wasn't as loud (as I normally like it). Even played with the volume setting on both the Sumo and the ipod. I still have a whole week to go to trial the Sumo. The Sumo may use older technology, but it is still a powerful hearing aid.

Next Tuesday, I'll trial Phonak's Naida IX UP. Yes, the Naida, the one I despised a couple years ago when I trialed it then (the V UP). Phonak and audiologist both say the glitches/issues that a batch of the early Naidas have since been resolved (Naida shutting off on its own, etc.). And audiologist has a few clients who are really liking the Naida and the benefits they're getting from the hearing aids. I'm hoping the upcoming trial period will be better. Yes, I'm very sure it'll still take several programming adjusting sessions to get the Naida tweaked just right (I don't think we had the V UP tweaked just right the first time, but with all the other problems I was having with it, I just couldn't be bothered with it after the 3 months of trialing).

Dilemma

2010-05-27T12:36:00.004-06:00

After calling EqualityCare to discuss coverage for hearing aids, basically if I wanted to get a new hearing aid nowadays to replace my old one, I should have just requested the Otion Sumo hearing aid instead of Phonak sending back a replacement. So now I'm trying to get in contact with the audiology office again, and see if we can work something out. It wasn't a repair to my old hearing aid, it was fully replaced with a new Supero. Yes, it works, but sometimes I just wonder if another hearing aid might be better. So I'll call the office again in about half an hour or so (when they get done with lunch) and see if something can be worked out. My original Supero was already 6 years old when Telecoil went busted (and apparently Phonak couldn't fix it), so EqualityCare would have covered a new hearing aid to replace the old one (they will cover new hearing aids after the old one has been used for 5 years and the warranty has expired). The replacement Supero is technically a whole new hearing aid, right?

EDIT: called audiology back.. it's still the same old Supero, just has new parts. The way the audiologist said it this morning, I got confused. Mentioned that I would like to at least trial an Oticon hearing aid, yada yada. Yeah. Got that straightened out.

It's back!

2010-05-27T08:25:00.003-06:00

I have my Supero hearing aid back! Yahoo! Well, actually, it's a whole new Supero hearing aid. Apparently Phonak couldn't repair my actual hearing aid, so they just replaced it instead. Hum. Wow. Anyway, I'm very glad to have the Supero back. And just in time for my sister's birthday too! Today ought to be a good day!

Phonak vs. Oticon

2010-05-20T14:28:00.003-06:00

I've worn Phonak hearing aids since I became deaf at age 2, and have always been happy enough with their products (until I tried out the Naida for 3 months a couple years back, which I didn't much care for). Now I'm just wondering how the Oticon products compare to Phonak. I currently am wearing Phonak's Supero 413AZ, and have been looking at the specs of Oticon's Sumo (Sumo's MPO and gain is just slightly higher than the Supero's). Just wondering if there's much of a difference between Supero and Sumo, such as any difference with feedback control, how the aids work in noisy situations, etc. I've had the Supero since May 2004 (so 6 years). It still works fine, but nowadays it seems I have to take the hearing aid back to the audiologist for more repairs than ever (telecoil setting went busted a couple weeks back and just now has been sent back to audiologist's office after being sent to Phonak for repair; battery cover broke and had to be replaced for the first time ever last month, etc. etc.). I'm just curious about the Sumo.

How does Oticon's FM products compare to Phonak's FM? I've quit using the old Phonak T-Mic FM transmitter since it broke/quit working frequently and have resorted to using the Hatis Epic silhouette earhook for listen to music. How about DAI? I tried DAI with the Phonak "shoe" on the Supero and directly connecting to iPod, etc. and I didn't like the way it sounded (static-y sounding) but perhaps I needed to have the audiologist do some adjustments to the Supero to make DAI work properly. Not sure if I will actually get a new hearing aid anytime soon or not. Just something I like to think about every once in a while. Maybe I just need to trial a Sumo and see if there's any difference; will have to see if something can be worked out.

Also curious as to when people generally replace their hearing aids. 6 years? 10? Do some people wait until the old hearing aids are busted/un-repairable before getting new ones? Just curious. The Supero I've had for 6 years now, the Claro (before I got Supero) 4 years; purple analog Pico forte 8 years, beige analog pico forte (before I got the purple ones) 7 years.

Still trying to get left ear implanted, it just may be a while longer yet. Now Medicaid insists that I score 40% or worse with the word recognition testing of the hearing test at best. I scored around 52% in the right ear the lest time I was tested (last year). It doesn't matter that the left ear is at 0% and it's the left ear I want to implant, Medicaid won't cover the implant with my 52% scoring of the right ear. From I was told, Medicare says person has to score 40% or worse in the ear that is to be implanted, and Medicaid generally follows Medicare's guidelines, but Medicaid will have their own specific guidelines. It's kind of frustrating, but what can I do. My right ear's scoring has been pretty consistent too (last year's testing, and the testing in 2006?, right ear scored 52%).

telecoil is busted

2010-05-01T22:51:00.002-06:00

The telecoil on my Supero hearing aid has gone kooky. How that happened, I have absolutely no clue at all whatsoever. One night, I was listening to music on the computer with the Hatis Epic silhouette earhook, everything working great. The next day at work when I try to listen to music on my iPod, I couldn't hear anything! If I maxed out the volume on the iPod, then I could barely hear something. And I found it odd that I didn't hear a buzzing sound when I put my ear close to the computer on the telecoil setting. That was when I knew something was wrong. Even just switching to telecoil has an odd sound now, that wasn't there before. I relay-called Phonak to see if there was anything I could possibly do. They said probably not, that it sounded like the hearing aid would have to be sent in for telecoil to be fixed. Oh great. Called and set up an appointment with local audiologist for ... Wednesday morning I think. Will see what happens then. I'm most definitely not happy to have to go back to the old analog for telecoil function. But what else can I do?

Oh no!

2010-04-13T14:05:00.002-06:00

I was getting ready to leave the house to go to work when my hearing aid
beeped at me. Oh great! Took out the old battery, and the battery cover
broke. Crap! I wasn't too happy about that. I put a new battery in, and
the cover is still somewhat useable. But I know it'll break off
completely soon enough. Drove to the audiologist real quick, to see if
the assistant cold replace the cover. This unexpected errand is making
me late for work, but I want to get the battery cover taken cared of.
This is the first time the battery cover broke the whole time I've had
the Supero hearing aid (since May 2004). Wowza.

Audie's assistant doesn't have replacement covers for my hearing aid, she did put in an order for a new one to be sent to her. Hopefully within a couple of days or so the battery cover will be fixed.

So frustrating

2010-03-19T16:49:00.001-06:00

A few weeks back, I sent an inquiry to the Wyoming EqualityCare office about their criteria for cochlear implant coverage. Today I've gotten a response. Since I sent in the inquiry, they've removed the "no communicating" bit from their criteria. Great!

But... I have to have scored 40% or worse in order for Medicaid to cover the implant for me. I've scored somewhere a bit over 50% with the right ear (0% for left ear). Ugh! Advanced Bionics insurance reimbursement already knows of this. I'm waiting on a response from Allison Biever to see if there's something else we could do. I am so incredibly frustrated right now. I do know there is still the CNI Cochlear Implant Assistance's program, and I may have to go that route afterall. I want to see what Allison has to say first.

2010-03-16T00:19:00.002-06:00

Oh wow. The news of the meningitis outbreak in Oologah, Oklahoma has gotten to me. So far in the past week, 7 kids have contracted meningoccocal meningitis, and 2 of those kids have died. I am hoping that the other 5 victims get over this and get better as quickly as possible, with no lasting after-effects, and that no one else contracts the illness. Just thinking about this is making me sad right now.

In other news... I ordered the documentary "From Silence to Sound" from Amazon.com, and it arrived today (along with Seasons 2, 3 and 4 of ER). It's about 45 minutes long, about this deaf man from Oklahoma named Justin. He's been deaf all his life, and was the first person in the state of Oklahoma to get bilateral cochlear implants in March 2006. Was a very interesting DVD to watch, so I'm glad I bought it. The documentary is basically of Justin sharing his story of what his childhood was like, and of his experience getting the implants.

Medicaid's Criteria

2010-03-08T14:39:00.001-07:00

Advanced Bionic's insurance reimbursement just caught this contradiction with Medicaid's cochlear implant for adults coverage criteria.
The first criteria states: "patient must have post lingual deafness" so patient need to have developed speech before becoming deaf.
But then later on, it states "patient must have no means of communicating." Contradicting, isn't it?

Hopefully Advanced Bionics will be able to get a hold of someone at the Medicaid office and let them know of this "error" and that they get it fixed. I'm surprised I didn't catch this sooner. Wow.

new earmold, finally!

2010-02-17T16:30:00.000-07:00

FINALLY! Yesterday my new earmold arrived at my audiologist's office. But I didn't pick it up yesterday, since I was too kooky in the head. Today, before going to work (running late oops), I did go get it. Unitron made the earmold this time. Didn't even realize Unitron made molds too. Huh. Anyway, it's a half-shell mold, clear non-allergenic. Also got my Supero hearing aid back too, finally! Audie's assistant told me the hearing aid has been completely cleaned and everything, so good! Fitted the earmold, put Supero hearing aid on and WHOA loud feedbacking ahh! It still feedbacks a bit when it's behind the ear... but if I turn down the volume, that helps. Will have to get the hearing aid adjusted so I don't have to turn down the volume every time I turn the HA on. Yep. I'm glad to have the Supero back, I surely did miss it.

Now... the new earmold cost me $75 today. Wait a minute! Last earmold cost me $68, and before then, $60, $55ish... I swear, these people just increase the price on earmolds every other year. And this is the cost for just one earmold. ONE. I'd expect that kind of price for a pair, but not for a single. Definitely not too happy with being charged more for the earmold. Oy!

Hearing Aids for Africa/African Hope Initiative

2010-02-12T15:55:00.001-07:00

I have some friends that are part of the African Hope Initiative, helping the deaf kids in Africa (they actually went out to Africa in November to see how the construction of the deaf school was coming along, meet the kids, and speak with their parents). I think it's great they're part of this, and I want to be involved as well. So my project for the Initiative is to collect used hearing aids which will be donated to the deaf kids in Africa. I got a PO Box so people can send their used hearing aids, and I'll give them to my friend and she'll make sure they're fixed and working properly before donating them to the deaf African kids.

If any of you here have used hearing aids, or know of anyone who has some laying around and have no clue what to do with them, and don't mind giving them up... send them my way!

Hearing Aids for Africa
PO Box 50761
Casper, WY 82605

the PO Box isn't that big (about the size of a 3-inch 3-ring binder that's full? something like that).

If you want more info about the African Hope Initiative, they have a website and a facebook page.
http://www.africanhopeinitiative.org
http://www.facebook.com/pages/African-Hope-Initiative/212448954922

Difficulties

2010-02-01T13:40:00.003-07:00

So, I guess Wyoming EqualityCare is being difficult with the appeal case. The person at Advanced Bionics working on my appeal case is resubmitting everything. She's requesting for copies of my medical records and another letter from Rocky Mountain Ear Center so she can send that in. I've already resent the copy of the denial letter so she could use it as well. So frustrating! Hopefully this time we actually get somewhere with the appeal, and actually get an answer!

fun with hearing aids

2010-01-21T14:06:00.004-07:00

Today, before getting to work, I decided I'd play around with the different hearing aids I had with the Hatis Epic stilouette. With the Claro hearing aid, the volume is far too quiet. I even maxed out the volume on the iPod and had to resort to turning up the volume on the hearing aid as well, and it was still too quiet. Then I gave the loaner Unitron a try, and whoa the music sounded different, unusual. Then I dug out my purple Phonak Pico-Forte's. They still work! With the stilouette, the music sounded better (though a bit different), and the volume is better too. It's just a matter of making sure the microphone is next to the stilouette to get a better sound, and it's tricky to get them both sitting behind my ear just right. Hm... Already I miss my Supero!

Am considering making a new website for myself, in relation to my hearing loss and meningitis. I do have a webpage about my meningitis, except it doesn't mention much of my meningitis story. So, why not just make a whole new website and combine both meningitis and deaf stories and just have fun with it? Yep.

Meningitis Angels, hearing aids

2010-01-21T00:15:00.004-07:00

Last Thursday, I flew to Houston, TX for a Meningitis Angels conference. Overall, it was an interesting experience. I've read of what meningitis can do to people, of the damage meningitis causes. But I've only met very few individuals locally that were deafened as a result of meningitis, that's it. But meeting people who lost limbs, suffered from traumatic brain injury, etc., wow. That really opened my eyes. But I'm glad I went. It was nice to meet others who had meningitis and to see how they are doing these days after having had meningitis recently or years ago. I am definitely going to do better at keeping in touch with the Meningitis Angels folks, just communicating with them and such.

Got my new earmold made today (ok yesterday, since it's after midnight and it's now actually Thursday). I requested for the earmold to be made of non-allergenic material, in hopes that'll reduce the ear irritation problems I've been having. While the earmold was setting in my ear, he got another hearing aid and proceeded to hook it up to the computer, then put it on my ear. Oh, he wants to keep my Supero hearing aid so he could try to get the feedbacking problems fixed. So for now I've got a loaner hearing aid, a Unitron. Eh, everything sounds too weird with the Unitron, so I found my Phonak Claro hearing aid and am currently wearing that one until I get the Supero hearing aid back. With the Claro, things sound a bit more normal to me (more similar to the Supero). Quieter, but more normal. I tried to turn up the volume on the Claro and that just resulted in feedbacking, ahh!

He also tried to encourage me to consider getting a new hearing aid, since he knows I've had issues with the Supero since I first got it in May 2004. I told him I wasn't too worried about getting a new hearing aid at this time, that I'm more focused on getting my left ear implanted first. He's pretty happy to hear I'm still proceeding with the implant process. Now if only Medicaid would approve of it.

Still waiting to hear on the status of the cochlear implant appeal process. While at work yesterday (ok, Monday), I made a relay call to Advanced Bionic's insurance reimbursement department to find out the status, and I was told she'd leave a message with the person handling my case to get back to me. No emails yet, but hopefully soon I'll hear something. Otherwise, I'll just try relay-calling back.

Oy!

2010-01-11T15:44:00.003-07:00

Turns out Medicaid didn't get the stuff Advanced Bionics insurance reimbursement sent to them, so AB is having to resend the stuff. They're sending it via Fed-Ex and someone at Medicaid will have to actually sign to receive it. Oy!

Internet relay called the local audie's office and made an appoinment for next Wednesday to get a new earmold made. And I asked if they knew Medicaid covered this sort of thing, and nope they don't. I figured as much, but I figured it couldn't hurt to ask. No big deal.

Also bought a Dry & Store unit off someone on eBay.. I figured it was about time I had one. Maybe if I used it for my hearing aid, and it cleaned my hearing aid and earmold, I wouldn't have as many ear irritation issues. Wyoming is pretty dry, so moisture in the hearing aid isn't much of a problem.. but it couldn't hurt to have a Dry & Store as I do occasionally get moisture in the earmold tubing just from wearing the hearing aid all day, etc. And it'll be useful for whenever I get the implant too.

Earmolds, BAH!

2010-01-08T15:46:00.003-07:00

I am so anti-earmolds right now. My ear's all irritated and slightly sore, which has been happening far too frequently. I'm sick of it! No matter what I do, my ear only stays better for a day or 2 before it starts getting irritated again. Grumble grumble grumble! I did email the local audie about it, mentioning I want to get a new mold made. Haven't gotten a response back from him yet. I just may go the whole weekend with the hearing aid off! I haven't even bothered to put it on today either. I stuck the hearing aid in my pocket and went to work. No one needed to talk to me so great!

Still no word about the implant appeal yet. Did email the AB Insurance Reimbursement person and got a quick response from her, saying she'd look into it. Haven't heard back from her in a couple of days now.

EqualityCare inquiry

2009-11-17T13:48:00.002-07:00

I sent an inquiry to the Wyoming EqualityCare about their coverage for cochlear implants last Friday... Today I got a response from them.

Dear Client,

This correspondence is in response to your recent Ask EqualityCare submission. Wyoming EqualityCare records indicate that the prior authorization for cochlear implants was denied as the client is able to communicate through speech. In order for a prior authorization to be approved for clients over the age of 21, the client must be unable to communicate through speech or other means to make their medical or basic needs known. The documentation that was submitted to Wyoming EqualityCare states that this is not the case. If you believe this is incorrect, please contact Rocky Mountain Ear Center.

If you have any additional questions, please contact ACS Client Relations at ------------

Sincerely,

ACS, Inc.

Client Relations

I have forwarded this email on to Advanced Bionics. This is just not right at all, how can they factor in how well one communicates, despite how badly they hear? Even FDA guidelines doesn't factor in communication skills, just hearing loss and how POORLY the person hears speech with hearing aids. This is an outrage!

Medicaid's reasoning...

2009-11-12T18:32:00.003-07:00

Just got a reply back from Rocky Mountain Ear Center on why Medicaid/Wyoming EqualityCare denied the cochlear implant.
"Equality care is stating that DOES NOT MEET CRITERIA: PATIENT ABLE TO COMMUNICATE THRU SPEECH."

Um... how messed up is that? So I have good speech and I communicate orally, that doesn't mean I shouldn't get an implant. If only they could actually SEE how I function with the little hearing I've got in the right ear. I can't even understand my own MOTHER without facing her. I have to lipread everyone in order to make sense of what they're saying, I need subtitles/captions on at all times, I need all the visual support I can get! I can barely use the phone these days, and always struggle to make sense of what my own mother is saying over the phone. She constantly has to repeat what she says on the phone for me to get it. I'm astounded over their reasoning, I really am. So I got lucky with having good speech, thanks to the deaf school and a dedicated speech therapist working with me on my speech. I'm lucky I can still communicate via speech, but I need all the visual support I can get when it comes to understanding what the other person is saying. And if I'm out at a restaurant or noisy situation, communication is pretty much... zip, even with lipreading I just can't understand crap. I can only lipread if I can hear what is being said, and I can hear if I can SEE what is being said, so I'm screwed either way. Come on Equality Care, seriously. That's a really stupid reason to deny the cochlear implant to someone who has 1 fully deaf ear and 1 that has about oh 20% hearing and can barely get by with a powerful hearing aid. Golly.

Rocky Mountain asked me if I wanted OMS Insurance or Advanced Bionics to do the appealing. I told her to send the information on to Advanced Bionics. We'll see how things go. Seriously.. just... wow.

Denied...

2009-11-09T18:10:00.004-07:00

Medicaid has denied the cochlear implant request. Rocky Mountain Cochlear Implant Center will send the information on to OMS Insurance Support, and OMS will appeal, and hopefully work their magic. I might even get in contact with the Let Them Hear Foundation and see if they can be of any support as well.

Edit: LTHF is currently not accepting any appeal requests, so I'll just have to rely on OMS at this time. That's fine with me though. Also contacted Advanced Bionic's insurance support as well, to see if they could be of any help.

now I'm a bit torn...

2009-09-10T18:17:00.005-06:00

With the news of the new Cochlear Nucleus 5 device now out on the market, I read up on the info for the new device... and now I'm a bit torn as to which implant I would choose for myself. For the last few years I've been thinking Advanced Bionic's Harmony, for sure! I like the design of their BTE processor, and of the speech processing strategies they offer. But now with the new Nucleus 5 out, just the thinner BTE processor appeals to me. The thinner internal implant is nice too, and the processor is also made of titanium and such. Hm. I don't know! I've already shot off a couple of emails, and have requested an information packet from Cochlear about the Nucleus 5. And I plan on comparing Nucleus 5 with Harmony, and I will continue to talk to various CI users online and so on. I still have a while before I actually get implanted. I know both companies are excellent, and their products work well, so I can't go wrong with either one really.

I have an appointment on the 15th (next Tuesday) with a new local doctor. The person who takes care of the insurance approval process at Rocky Mountain Ear Center, she told me I needed to have a primary doctor (that has referred me to them) and such before she can even turn in the paperwork to get the pre-authorization from Medicaid. Well, gee! I haven't had a primary doctor in years, and really, no one actually referred me to Rocky Mountain Ear Center. A former school district audiologist told me they were an excellent center to work with if I should go down the implant path. And I did my research online, looking at the different centers available in Colorado (and even Boys Town in Nebraska), when I decided on Rocky Mountain Ear Center. Anyway, I made a couple of calls via internet relay and got an appointment set up. Turns out my stepdad's daughter used to go to school with the doctor I'll be seeing on Tuesday, so it's good to know that he's a good person and all.

Hopefully after that appointment, the Ear Center can finish filling out the paperwork for Medicaid and we can get going with the process, that is if Medicaid approves.

Also, my mom gave me more of my audiology reports from when I was in school. Excellent! I haven't closely looked at them yet, but I will soon enough. I'm just happy to have them now, in my file box.

EDIT: Ok, I think I'm still set on picking Harmony, regardless. Did a little more browsing and comparing of both devices on the manufacturers' websites, and I know I'll be happy with Harmony. I'm sure Nucleus is an excellent device, but it's going to be Harmony for me. Nothing against Cochlear. I'll still continue to follow the news and whatnot though.

Uuummm?

2009-08-27T16:51:00.003-06:00

Um... My hearing aid's acting all weird. I'll turn it on or try to change settings and it'll beep, then silence.... then eventually sound will come around. But that's unusual for my hearing aid. Makes me wonder exactly what's going on with it. Is there something going on with the on/off and programs switch/button? Or is it just something internal? Hm. Just not sure if I'd want to contact the local audiologist... but what other choices do I have? Hm.

Wyoming Equalitycare

2009-08-23T15:38:00.002-06:00

So I did some browsing around last night. I explored the Wyoming EqualityCare website so I could get a good idea of what I can use my card for in terms of medical/health care. Good for 1 preventive/cleaning dental visit, few cavity treatments, any tooth extractions, in patient and out patient hospital visits, some eye care stuff, up to 20 therapy sessions will be covered, etc. I also found the Rocky Mountain Ear Center, Dr. Kelsall and the audiologist Allison all in the list of providers on the website as well, so that's good to know.

Then I tried to see if I could find out anything about Wyoming Medicaid and cochlear implant coverage. This is what I found:

Wyoming Medicaid

Wyoming provides Medicaid benefits for cochlear implant services under its EqualityCare program according to FDA indications. Adults must be post-lingually deafened. Children may be pre-lingually deafened but must be over 12 months old. Coverage is limited to a one-processor system.
Source: http://www.cochlear.org/sys-tmpl/wyomingmedicaid/

Interesting. Of course, I have no idea how old this information is, but it still is a bit of information. I am still going to work on finding out absolutely for sure though on what Medicaid/EqualityCare covers when it comes to cochlear implants.

Oooo!

2009-08-22T17:03:00.002-06:00

Email of the day: I have interpreters lined up for the community classes I'm taking at the college. Excellent! One will interpret the dog obedience classes, starting on Tuesday. She's interpreted for me before from 9th grade up, even for some college courses and such. She's an awesome person and I really like her. I'll have a different interpreter for the photography classes on Sundays starting Sept. 20th. Also another great interpreter too. And the college is paying for the interpreters as well. Perfect.

Mail of the day: I got my medicaid card. I wasn't expecting to see it so quickly. Just yesterday I got a letter from the DFS office stating that I am eligible for Medicaid, and then today the card arrived. Whoa. Already I've emailed Rocky Mountain Ear Center to inform them I just got the card, and of what I should do next.

Crazyness

2009-08-18T13:12:00.003-06:00

I emailed the person who is in charge of lining up interpreters and any other assistance one might need when taking classes at the college, informing him I was registering for a couple of community classes and would like to have an interpreter. His response? "You should contact (insert 2 names)!" Um, say what? So then I emailed another interpreter and told her of what was going on, and she got back to me, saying she had spoken with another interpreter. They both told me I did the right thing by emailing the college person, and that the one interpreter was confused over his response to me. Today, I got another email from the college person, and finally an interpreter is being lined up. I do have to sign a contract, and had to confirm which courses I was taking for him. Not a problem. I'm registering for Dog Obedience (my dog Bryan, boy he could really learn some manners!) and Introduction to Digital Photography. Now, I'm sure I'd fly through the photography class with no problems, but I thought it'd be fun to take. Gives me something to do on Sundays for about a month or so. And the dog obedience, that should be an interesting experience.

Still waiting to hear about medicaid. Since I did qualify for SSI, I should be able to get medicaid. But as to whether or not medicaid will cover cochlear implants, I don't know yet but I'll find out somehow. Seems like the auditory rehab is already taken cared of for whenever I do get the implant. Excellent! I am quite anxious to get things rolling, but of course, I have to be patient, and wait to get all the information in the mail and whatnot.

Word mix-ups

2009-08-04T14:11:00.002-06:00

You know what? Once again, I have gotten 'chicken' and 'tickets' mixed up once again! I was sitting in my step-dad's office with my sister the other day. She was on her computer and had ordered some tickets for a David Cook concert, and said she was just ordering tickets when I asked what she was doing. Of course, I got the confused look on my face again. "Chickens?" I asked her. "No! Tickets for a David Cook show!" Oohh. Whoops. Chickens and tickets do really sound similar, and even look similar on the lips. I mentioned the word mix-up last night to my mom when we were in the backyard on the swinging bench, and she thought it was funny.

And hopefully, I am one step closer to getting the cochlear implant, but we'll see. I'm still figuring things out and trying to make sense of things.

stuff

2009-07-02T13:23:00.002-06:00

Still waiting on SSI. My friend and former interpreter for so many years at school, she also received paperwork to fill out on my behalf from SSI (as did my grandmother, and perhaps some other people as well). She told me she read on the paperwork that once the office got her paperwork back, that they would expediate the process. Hopefully, this means something! We never got all this extra paperwork the first time I tried to apply (shortly after graduating high school). I just did the initial applying, sent in a few of my paycheck stubs and that was it. Denial letter came several weeks later. But this time around, everyone is having to fill out some paperwork for me. I really do hope this does mean something. But we will find out soon enough I suppose.

Today, I think my ear is plugged. I put my hearing aid on and didn't really notice anything sounding funny at first. But when I put the ipod on and start playing some music, it sounded different and odd. Checked the hearing aid and earmold and tubing, no blockage or moisture. So there's something funny going on with my ear. Experiencing tinnitus today too. Sucks! But since I'm at work right now, I can't do anything. Ipod and hearing aid both sitting on the desk, I'll just suffer through the tinnitus as I get my work done.

Chat at HearingJourney.com tonight. Yay! I completely forgot the chat last week, as I was still in shock over the news of Michael Jackson's death. Yes, his death has affected me. I've loved his music since I was a little kid. He was the first real musician I started to listen to and really got into (long before the days of Hanson). I used to sneak into my parents' room just so I could borrow my dad's copy of the Bad album and listen to it for a while. My sister and I used to watch his Moonwalker video quite a bit. I remember just watching Moonwalker and being really fascinated with his dance moves, wondered how the heck he could do the leaning dance moves in Smooth Criminal without falling onto his face, the bizarre video he had for Leave Me Alone and loving the fact he had a pet monkey! Even today I still enjoy his music and videos and dance moves. Michael Jackson was a music genius, that's for sure. I will definitely appreciate his music more now than I ever have.

SSI, Airport, etc

2009-06-12T13:45:00.003-06:00

Last Thursday, my aunt and I flew out to Mississippi. Flying out, I had no problem. On Monday as we were going through security check at the Gulfport airport, I had my hearing aid hanging in front of my ear instead of resting behind my ear. Some of the security personnel noticed this and pointed it out to me, wondering if it was a bluetooth device. "No, it's my hearing aid." "Oh, ok, come on through then." That's the first time I ever encountered security questioning whether I had a bluetooth device or a hearing aid on. It kind of made me laugh.

As for SSI, well, we got more paperwork to fill out! I myself have to fill some out, my mom does.. As do my counselor. So I'm sure Dr. Kelsall and the audiologist at Rocky Mountain Ear Center are having to fill out some paperwork as well too. Fun stuff, all this paperwork to do. And my mom's been trying to get a hold of a local disabilities lawyer who specializes in SSI/SSDI processes or whatever. It's possible that he just may be out of office for a while, who knows. Mom's left a message on his machine though, so hopefully we'll hear something from him.

WSD Archive Website

2009-05-31T23:56:00.003-06:00

All right! I managed to find a version of CuteSite Builder to use to make the Wyoming School for the Deaf Archives website. I started the website oh 2 or so years ago, and for a while I did actually focus on it and work on it. But since then, I've seriously have gotten sidetracked, it's not even funny! But now, I'm getting back on track. Afterall, I did pay for the web domain and for the hosting (which I'll have to renew this coming November I believe...). Anyway, now that I have the site builder, well it'll be smoother and easier on me. Doing a website in full fledged HTML is time consuming, and well, my HTML knowledge isn't as good as it used to be. And there's also the fact that webpage design seems to be changing constantly, with XHTML, flash, java scripting, CSS and all that jazz. Say what? Um... pft how about I just use a site builder? Yeah. And with 1 GB USB jump drives, I could possibly save the entire site on 1 (the current site is saved on a 256mb jump drive with no more room for additional files).

So the current website will definitely be renovated. I'll even play around with the Coppermine gallery and change the layout for it. I may even create a youtube account specifically for this website, as I do have a bunch of footage of random events in relation to the Wyoming School for the Deaf. I'll attempt getting in contact with those who have attended the School for the Deaf and see if they have anything they want to contribute (info, articles, photos, etc.) and go from there. As for news articles, I have plenty! I'll double-check with the current Star Tribune editor and make sure it's ok I use their articles. I'm sure it'll be no problem, as long as I credit the Tribune, which is easy. Any articles that are already on the Star Tribune website, I just link to those. Anything older, I publish onto the website with a link to trib.com since the Tribune is the source.

Now if I can just remember the plan I originally had for this website. Well... I'm not even sure where the original jump drive is. Oh that's not good, I better find it! All of the photos are on it. Hopefully it's been in my desk drawer all this time, but only time will tell.

SSI

2009-05-22T15:12:00.003-06:00

Had my appointment today to apply for SSI. I showed up, and sat while waiting for my name to be called. Of course, I never did hear my name being called, another woman thatw as also waiting asked me if I was Meghan, then told me I had been called. Oh! Made my way over to the desk and sat down. From there, the SSA person proceeded to ask various questions and getting information and stuff off his computer. Back and forth, questions and answers (and having him repeat what he said a few times as he was quiet and I had a hard time hearing. At one point, he had to turn the computer screen so I could see a doctor's name as I thought he was saying Dr. Grit or Grint or something when really it was Green). Gave him my hearing test results (copies, of course) to be included in the file and all that stuff. He said as long as I don't make over $980 a month, I could qualify. I'm at about $850 average on a monthly basis, as long as I don't actually work up to 29 hours a week (I was approved to work up to 29 hours a week in January, but I have never made it to the full 29 hours yet as I run out of things to do at work, so I average 25-26 hours per week). He says he'll get everything sent off to the Cheyenne office, and they'll make their decision within the next 60-90 days.

This past week, I was emailing a deaf friend who had been through the SSI process. Was nice to hear from her and get some feedback. Hopefully things will work out. I'm just not going to think too much about this, I'll just stay focused on other things, keeping busy.

Sidekick LX 2009

2009-05-13T12:46:00.006-06:00

I got my brand new Sidekick LX 2009 from T-Mobile yesterday. I was at work when I got the email from UPS stating they had delivered my package. After receiving that email, I was motivated to get my work done as quickly as possible so I could run home and play with my new "toy". I was so excited when I opened up the packaging, really truly excited. I have never upgraded to a new device through a mobile company before, ever. I opened up the box, and took the LX out of the plastic coverings and basically dumped everything else out of the box. Wow! It's a really nice, slick device. A definite improvement over the Sidekick 3, which I've used for over 2 years.

(click on the photos to see them in full)

I noticed there wasn't a new SIM card, so I wasn't too sure if I was supposed to use the old one from the SK3 or not. I got onto my desktop computer and logged into my.t-mobile.com and used the chat support to get that question answered. "You just use the old SIM card from the old device and it'll work!" Awesome! Transfered the SIM card, installed the battery and the new teeny tiny micro SD card, plugged the LX into an outlet and powered it up. Got the LX registered under my T-mobile account name and all that jazz, and I just played with it for a while. Man it was one noisy device for a while, as I went through the settings to turn off the sounds and use the "subtle" alerts (where the trackball flickers for new messages, etc.).

the micro sd card and a nickel, so you can get an idea of the sizing of the card, in case you've never seen a micro (I was shocked to see how tiny it was!).

difference in battery sizes, and the new battery is supposed to last longer.

I'm really impressed with the new LX! A huge improvement over the 3, that's for sure. The LX has Facebook, Myspace and Twitter applications, all which you can use for free now. On the 3, you could download the Myspace application (it didn't have Facebook or Twitter so you'd have to go onto the internet to use those) and pay a monthly fee. The instant messengers are all upgraded/updated on the LX. I can now see and use all of the standard smilies on MSN now (before, my mom would use a random smilie on her side on the computer, but it'd show up as symbols on the SK3 for me). There is 3G capabilities on the LX, but of course Wyoming doesn't have the 3G coverage so I'm still using the same networks as before, but that's fine with me. Changing of text sizes on the LX now, small, medium and large. Mine's on the medium setting. Camera has been updated, and you can now take short videos with it. Hey, you can even view videos on Youtube on the LX! Wow! I'm still using the exact same plan on the LX that I was using on the 3, the Sidekick unlimited plan.

Only downside is that there's no Relay applications on the new LX's just yet. I did shoot off an email to i711.com about this and asked if they were going to have the application available soon enough. I never did use the relay on the SK 3 really, but sometimes you just never know when you're going to need the relay, so it'll be nice to have i711 on the new LX (the previous Sidekicks all should have IP-Relay and i711 applications, it's just the newest versions that don't have them just yet).

Looks like I can now text photos from the LX as well. Hm! I haven't tried this out yet, but I will someday.

Overall, I'm really impressed with the new LX 2009.

SSI stuff

2009-05-06T14:01:00.003-06:00

I'm still amazed that there's no ossification at all in my cochleas. Still. I just can't get over the fact!

Anyway, I basically ramsacked the computer room downstairs looking for the SSI stuff that I had gotten in the mail a couple months back. I did fill out the disability report stuff at the Social Security website in February and sent it in, and they sent back a notice with an appointment time. Of course, then, I didn't take up on the appointment and had it canceled. But today, I got online and looked real quick for a phone number, then started up a i711 relay call online. The automated stuff took a while to get through, then finally the relay operator got a hold of a live representative, and went from there. Appointment has been set for May 22 at 12:45 p.m. to fill out an SSI application, to go over the disability report that I sent in, and to go over the stuff they are asking me to bring in. We'll see how this works out. I'm going to do as much research as I can, and try to find people that have been through the process so I can get feedback from them, so that I'm not all completely clueless of what I'm doing with the process.

More stuff

2009-05-05T15:21:00.002-06:00

Leave it to me to forget stuff, ha. :)

I'd still rather have the left ear done though, just so there's sund
coming into that ear. If it takes a while to make sense of anything, so
be it, I'll work at it.

Now, just need to figure out insurance and such. He's surprised I'm not
on any medical assistance program of any sort from Wyoming already with
the very profound loss in the left and severe to profound in the right,
and encouraged me to check SSI again. Now, if we know of anyone that
could help walk me through the SSI steps, great. I'm not even going to
ask vocational rehab, again and again Amy has not been of any help. if I
could afford the $360+ a month for the BCBS Wyoming health insurance
pool, I would have definitely gone that route. But since I can't, will
definitely look into SSI some more. He says he'll be more than happy to
provide the proof of my deafness to them. He also says the CNI can get
the implant device donated, and he himself would charge me for his part
as the surgeon, and would work with the hospital on bringing their costs
down if I still can't get the insurance.
--Meghan

Todays appointments

2009-05-05T14:49:00.001-06:00

We found Swedish Medical Center and managed to find a parking spot in
the garage. Went inside the building and made our way to Rocky Mountain
Ear Center. I checked in, signed some papers and waited. Soon enough,
Allison took me back for the hearing test. We talked a bit on the
insurance situation, yada yada. Did the hearing test. I did a lot better
this time than the last time, since I had ....Shane..... adjust the
hearing aid almost 2 years ago. But I'm still in the eligibility
criteria. Sentences I did ok with, as I guessed and whatnot. Single
words, though, not so well haha. And as always, no results for left ear.
We talked a bit more on insurance and ssi, and of the different
implants. Then I was done with her.

We went down to the cafeteria quickly, for a quick lunch. Got lost for a
bit but managed to make our wa back to the Ear Center. Another
audiologist checked my ears pressure, then I waited some more wit
grandma in a room. Nurse came in, answered some questions for her and
she did a few quick balance tests and such. Then waited for Dr.
Kelsall.

Came in and recognized me! Took him a while to realize that it was my
grandma with me and not my mom. Shock! He said the cat scans of my ears
looked great! No ossifications or blockages or anything. That was a big
surprise. All these years, everyone has suspected thered be some
ossification in my cochleas, but there isn't any. Wow! Kelsall says we
could implant either ear. Right ear would definitely get the best
results quickly, the left year could take a long time to get any real
benefits. We also talked of the different devices too. He says he's seen
more internal device failures from Advanced Bionics, even nowadays, that
the fail rate is 1/100 where with Cochlear its 1/1000. Hm, makes you
think. Allison says Cochlear has a really good internal device, but the
external does tend to break, and Advanced Bionic's external device is
excellent.

I'll have to do some serious thinking. I'm stil intriqued by the
Advanced Bionics evice, but will definitely contact both companies and
get feedback from them.
--Meghan

Preparing

2009-05-04T10:54:00.003-06:00

I'm at work right now. Have been for a bit over an hour, which is unusual for me since I'm NEVER at work at this time. I don't normally get to work until after noon. But today, since I am leaving for Denver, I thought I'd come in earlier just to get everything taken cared of before I leave. Make things easy on my supervisor for while I'm gone so she doesn't have to do as much for me (she won't have to worry about calendars, they're all done through Thursday!). Still waiting on the rest of the public records, la de dah.

Funny, I forgot my iPod when I left the house this morning, oh well. While driving the dog to the vet, I had to listen to him whine and cry from the kennel in the back seat the entire way. Such a baby, he is. He does not like being in the kennel. But, the kennel is safer for him. And at work, I'm listing to everything going on around me. Computers, people typing, doors opening and closing, people walking by, the fan/air conditioner? Or maybe that's the computer fan I'm hearing. I can't tell. Normally, all these sounds are distracting for me, distracting me from my work. But today, not so much, probably because I'm still not fully awake.

While I'm waiting for the public records, I'm sitting here, lurking on hearingjourney.com a bit, and pondering. Is there anything I should ask Dr. Kelsall when I see him tomorrow? Hm. Then I remembered the incident from last year when we were in North Carolina, when we encountered this deaf gentleman with the bone conduction hearing aid. Would this little test be worth mentioning to Dr. Kelsall, how I did hear something with the bone conductor behind my left ear? I have no idea, but it couldn't hurt, right? I am still hoping the left ear can be implanted, that there is some hope of hearing something with the left ear. I've already printed off the April 22, 2008 "Whooaa..." entry from this blog to share with Dr. Kelsall. And I'll have paper with me in the car so I can write down any more notes or questions. I'll have my sidekick on me, so I can browse back through blog entries and see if that sparks any more thoughts that I should mention to Dr. Kelsall, etc. I'm also bringing the CNI Cochlear Implant Assistance Program application, and I'll probably be asking him about that as well, and if he knows of any other funding options I should consider. And possibly, Allison might have an idea of how I could deal with the local audiologist situation (my refusing to go back to scamming audiologist, etc.).

Coming up...

2009-05-01T13:56:00.002-06:00

My appointment with Rocky Mountain Ear Center is May 5. Hearing test at 11:30 a.m., and Dr. Kelsall at 1:30 p.m. to go over the CT scan results. Awesome! My grandparents will come and get me on Monday after I'm done with work, then we'll head towards Denver. Do as much driving as we can, spend the night somewhere, then get to Denver for my appointments on Tuesday. Then after the appointment, we'll leave Denver and start heading back as much as we possibly can.

Yesterday Rocky Mountain Ear Center called our house. I saw them appear on our caller ID, and debated whether or not I should answer. I decided I would just let the answering machine pick up. The machine picked up, and from there, it seems to be an automated message being left for me. I listened to it, but could barely make out what the message was. The time of the appointments I was able to hear, but the rest of the message I didn't get. Mom told me they just wanted to confirm the appointments. Ah, ok!

Darn it. I missed the hearingjourney.com chat last night. Completely forgot that yesterday was a Thursday. Oh well, there's plenty of other Thursdays to catch the chat.

House

2009-04-28T13:53:00.002-06:00

I've actually missed all of the current season of House. I have watched seasons 1-3 on DVDs, but haven't managed to catch up to the current season yet. But, when I discovered last week that last night's episode of House would be dealing with deafness and cochlear implants, I had my Nebraskan friend remind me to tune in, just so I could catch this episode.

I have to say, last night's episode was very interesting, although not entirely accurate with the cochlear implant issue. A standard hospital doctor wouldn't be telling a standard surgeon to go ahead and implant a teenager while he's still in the OR. You have to go through testings and evaluations before you can even get a cochlear implant, to make sure the cochleas and nerves are intact and all that jazz. Also, one's implant wouldn't be activated right after surgery and that person wouldn't right off the bat be understanding speech. It was just a bit odd how they played out the implant deal. But it was interesting to see they used the Harmony device from Advanced Bionics. And for the teenager to rip the implant out of his head, that's just not right either, as the implant nowadays is stutured in so it doesn't get dislodged, and the incision in the skin is stitched/stapled up.

It's weird, because usually the people involved with creating House do their research and even consult with professionals about certain illnesses, disabilities, medications, procedures, etc. so I'm surprised at the amount of inaccuracies with last night's episode. Did they just not do a thorough research or something? Could they not get in touch with cochlear implant specialists? Hm. But it was still interesting to watch.

Figuring stuff out

2009-04-26T18:11:00.002-06:00

I just shot off an email to the University of Wyoming audiology department asking if they know of any reputable audiologists in the Casper area. If there aren't any, I'll just go back to them, and I mentioned that in the email as well. I mentioned of my audiologist's scamming customers and such, and that I am working on getting a cochlear implant and so on. Hopefully I'll hear back from them soon enough. I could do with a new earmold. My ear has been awfully irritated off and on for months now and I'm sick of it. It was my decision to go back to the colored molds (school audiologist always thought I had an allergy and ordered the non-allergic molds for me, but it was more of a problem with the top crook of the ear that would be sore from the earmold, rest of the ear was always fine). Ever since I got this current mold though, it fits, but my ear has been itchy and sore off and on.

Sidekick LX

2009-04-20T14:00:00.002-06:00

There's a new Sidekick LX coming out soon, May 13. Awesome! I still haven't upgraded through T-Mobile yet, so I'll have to start saving up and upgrade to the new LX. Yes, the Sidekick 3 still works well and all, but the track ball has definitely gotten a bit funky on me. And, it'd be nice to have a newer device that is more up to date. I've been happy with the plan and service I've gotten through T-Mobile on my Sidekick 3, and have been extremely happy with the Sidekick 3, I wouldn't want to switch to a completely different device. I have looked at EnV's, but no thanks. And Blackberry's just aren't for me. I'll just stick with the Sidekick for EVERYTHING (minus calling/voicing). I can't wait!

Vaccination project

2009-04-16T14:51:00.002-06:00

I'm pretty sure I mentioned that the Texas Childrens Hospital was working on a vaccination project and they interviewed various families that have been affected by illnesses that could have been prevented by vaccines on here. I can't remember for sure, exactly... but anyway. On Tuesday, I came home from work and came across a box on the front door step. I remebered I had ordered some stuff from the ADCO hearing products website, but thought the packaging was too big. I completely forgot about the vaccination project. Took the box in and was surprised at how heavy it was. I opened it up, and there's 8 copies of the book "Vaccine-Preventable Disease: The Forgotten Story". Wow! I flipped through it, and found my story in there. I read through the whole book and was impressed with it. I really do hope people read this book and realize just how serious the consequences could be if they don't get their children vaccinated against certain illnesses. Even I learned some new stuff from the book that I didn't know of before. A very powerful book, with powerful stories from different families affected by different illnesses (chicken pox, polio, different types of meningitis, flu, etc.).

http://www.texaschildrens.org/carecenters/vaccine/Default.aspx I would assume the book will be available for order/purchase from this website soon enough. They did an excellent job.

Meningitis vaccination reimbursement, AB stuff

2009-04-08T12:21:00.003-06:00

Advanced Bionics just recently redid their website (www.bionicear.com), and I happened to be lurking around on it while I'm at work (seems I do most of my research while I'm at work). Anyway, I was just randomly clicking links, looking at different stuff. And what do you know? I came across a page in the Customer Support area for meningitis vaccination reimbursement. Advanced Bionics will reimburse AB users who have gotten the pneumococcal meningitis vaccination that wasn't covered by insurance (paid for out of pocket). Now, this is good to know, for myself. I have no idea how much the vaccination would cost, but just knowing AB will reimburse it is handy. I'll have to keep this in mind as I progress along with the implant route.

I knew there was a risk of meningitis for those who get the implants, but I never knew what specific meningitis. The other day I just happened to be randomly research different meningitis types, just for my curiousity, and it occurred to me that pneumococcal meningitis would be the one that an implantee could possibly be at risk for. And now, having stumbled across AB's reimbursement information, well it all makes more sense in my head now.

Here is the information, in case anyone with the AB device is interested (I have no idea if Med-El or Cochlear does anything like this).

Also, just the other day, I got to thinking if AB had different processor options for the Harmony device. I remembered Auria having a battery pack option, where the battery pack could be clipped to your belt or something like that, and the BTE would be smaller and lighter. Harmony currently doesn't have something like this, but AB is working on alernative power options for the Harmony (similar to the battery pack). That is also good to know! I just wondered, since my right ear does tend to be sensitive to weight and such. Ever since I got the Phonak Supero hearing aid, I've had sensitivity issues with the weight of the hearing aid (especially when the FM boot/shoe is on). All of my previous hearing aids were smaller and used the size 13 batteries, while the Supero uses 675. And since I do tend to pile up enough stuff onto my right ear almost on a daily basis, it does tend to hurt after a while (Supero hearing aid + Hatis epic ear hook + glasses all on 1 ear, ouch). I just have no idea how my ear would handle the weight of the standard Harmony BTE, so it's good to know there will soon be alternative options. I guess you can say I have wussy ears.

Sound moment

2009-03-24T22:26:00.002-06:00

I got home from work and was just hanging out upstairs, watching some TV. My mom has been sick for a few days now, and has been at home all this time. Well, today, she took a hot bath to warm her up (she's had the chills). For a while I didn't take notice of anything sounding weird or unusual, as I was watching TV. Eventually though I made my way down the stairs so I could get some food for my dog (the bucket of dog food is kept in the storage room downstairs, it's hidden away). That was when I noticed the sound. I couldn't figure out what the heck that sound was. But it was louder when I got close to my bathroom downstairs, but then it clicked. 'Oohh, is that the bath tub running upstairs?' What do you know, it was! I myself prefer to take baths over showers and bathe quite a bit, but I have never heard the water running from the bathtub faucet as I was always deaf every time (I always take my hearing aid off and leave it on my dresser in my room before even going into the bathroom to take a bath).

Appointment Set!

2009-03-24T13:05:00.001-06:00

Ok it's set. The hearing test with the CI audiologist and the appointment with Dr. Kelsall has been SET for May 5. 11:30 a.m. for the hearing test, then I'll see Dr. Kelsall after the testing. Have already informed my supervisor of this appointment too.

Blah!

2009-03-23T15:23:00.004-06:00

It's times like this when I really wish my mom and stepdad didn't work for the floral industry. Rocky Mountain Ear Center's soonest opening for me to get a hearing test and to see Dr. Kelsall is May 5, which I really want to take. But there's Mother's Day, high school dances/proms and graduations, and even Memorial Day all in May going on, which stepdad NEEDS to be working, and mom will need to be working too (she doesn't work directly for the floral industry but she does help stepdad out by doing some of the floral work at her store). Mom's telling me maybe July to have the appointment. I feel that's too far off. This implant is real important to me, and I want to keep moving along if I can, which means getting stuff like the hearing tests and whatnot done as soon as possible. The sooner I get this stuff done, the sooner I can apply to the CNI Cochlear Implant Assistance Program, and the sooner I can get a decision from the CNI. I hate that I have to revolve around their jobs.

If I could, I'd just drive to Denver and take care of it myself. But I'm still too much of a chicken. I'm sure I could handle driving in Wyoming, but getting closer to Denver I'm sure I'd start to have anxiety issues. Just the thought of driving in Denver scares me. If I could get a friend or even another relative to help with the driving along with a GPS navigator to tell us where to go, great! I just don't want to have to rely on mom and stepdad so much for any Denver transportation. I'd take a bus, then have someone in Denver drive me around, but bussing it can be expensive (nearly $200 per round-trip basically). BLAH! There's going to be many trips to Denver throughout the process, I know that. But, I don't want to have to hold off appointments for so long just because of mom and stepdad's jobs. My job is more flexible, as long as my time off doesn't interfer with the supervisor's time off (we both can't be gone at the same time). Hopefully I can come up with another solution to this transportation problem (have already informed grandparents of the CT scan update, and emailed a friend [she's offered to drive me to Denver if I can drive myself down to Cheyenne, hm!] about it while asking for an email address of another friend who has gotten her implant from Kelsall, they might have some ideas). Will talk more with mom about this later, but blah.

Oh so frustrating!

(EDIT) You know what.. I'm just going to go ahead and take the May 5 date for the hearing test and seeing Dr. Kelsall (I've already emailed the Ear Center, AGAIN). I can get myself down to Cheyenne, and meet a friend there and the 2 of us will go to Denver together. She works for the state department of education, and works with the deaf kids/teens, and has plenty of experiences with kids getting cochlear implants. She fully understands the process, and has offered to drive me for this appointment (I emailed her updating her on my progress, scheduling conflicts and for an email contact for a friend who has gotten her implant from Kelsall). I already talked to my stepdad, and he says I should go for it, that I can get myself to Cheyenne just fine. It's mom that will probably be hesitate but, she'll have to realize I am 23 and growing up, and I can't be dependent on her every time. It would be nice if mom could be there so she knows what's going on and what Dr. Kelsall says.. But I'm sure I'll be taking notes somehow so I don't leave out anything. I need to be able to do things on my own without being so dependent on my mom, so be it, even if that means grabbing a friend for some of the trips.

CT Scan

2009-03-23T12:26:00.003-06:00

Well today was quite an adventure! Right at 10 a.m., my Sonic Boom alarm clock went off, causing my bed to vibrate. Whooooaaaa. Shoved my dog off (he was on my legs) and got up and going. Got the dog outside, and HOLY CRAP! SNOW! No! Got dressed and proceeded out to my car to clean the snow off. My snow brush wasn't doing the job so I got a broom from the garage. Much better! Went back inside, got the dog down in the kennel, made sure I had everything, including the money to pay for the CT scan. Finally I was on my way.

I drove like an old lady, driving at 20 for the most part. It's that bad outside. Visibility is bad, you can't see very far. Finally made it to Rocky Mountain Hospital/Clinic in McMurry Park, and went in. Filled out some paperwork, paid for the scan, and was taken back to the CT room. The radiologist techniction explained to me how the machine worked, and of how I should be laying still, yada yada. Ok, cool. Took hearing aid off (left my glasses in the car) and laid down. He put these little pillows next to my ears, and strapped my head down, then went into the computer room. Machine moved. I tried to watch the swirly x-ray go, but I couldn't. So I just focused my eyes on the ceiling instead, trying to keep my head as still as possible. Five minutes and it was all done. They will be sending the CD disc of the CT scan images via Fex-Ex to Dr. Kelsall.

Another step ahead in the implant process done.

CT scan set

2009-03-20T14:42:00.003-06:00

Got the CT scan appointment set! I relay called the imaging center to make sure they got the doctor's order for the scan, which they did. Then we went ahead and set up an appointment. Monday, the 23rd at 11 a.m. Wow, that's pretty fast. So now I'll have to go to the bank and make a withdrawal so I can pay for the scan. I would think I have enough in there, I can't remember what my latest bank statement from last month said. And I can't check it online as I don't have an online account with this particular bank. Maybe I should run down to the bank downtown and check and make the withdrawal, then come back to work and finish everything... I doubt I'll get off work before 5 as that is when the banks usually close.

I really wasn't expecting to do the scan this soon, but hey the sooner it gets done, the sooner the doctor has the results and that sort of thing. Wow.

Progress updates

2009-03-19T22:58:00.001-06:00

Oh I finally got a response back from the woman at the Gift of Hearing Foundation. Updated her on my going ons and that sort of thing. She's glad to hear I'm going to Dr. Kelsall for the process, as he's the one who set up the CNI Cochlear Implant Assistance Program, and she says she'll even contact someone at the CNI about me and find out what the total costs would be if they donated the implant and such. Would be helpful to know the actual costs, and figure out how to get all that paid.

I was in the chatroom tonight at hearingjourney.com (this is Advanced Bionics support forums), and one of the Advanced Bionics audiologists was in there. She informed me she had some info on funding resources or something like that, and that she'll send the information to me tomorrow. She's also going to see if she can get me in contact with cochlear implant users (probably in the Denver area) that have gone through the Rocky Mountain Ear Center and Dr. Kelsall, as I'd like to hear from them (I have a friend down in Cheyenne that's been through Dr. Kelsall and I've been meaning to get her email from a friend...). Just getting feedback from other users is always great, and would be even better if I can talk to others who have been to the same doctor/audiologist.

Tinnitus moment

2009-03-19T14:09:00.003-06:00

Oh! I forgot to mention this. The other day.. I forget when exactly.. But anyway, I was at home, just hanging out. The TV was on, but I also had my Acer Netbook out and running in front of me on my lap. Was just fooling around on Facebook like I often do in the evenings. All of a sudden, my hearing aid started feedbacking, or so I thought. I messed with the earmold in my hearing aid to get rid of the feedbacking. That didn't do the trick. So then I just turned off my hearing aid and took it off so I could look at it closely, see if there were any holes in the tubing... But, the feedbacking sound continued. Oh, it's not my hearing aid, it's all in my head! Was really strange, I have never heard the hearing aid feedbacking kind of tinnitus before. It only lasted a few seconds and it was gone. But it sure did get pretty loud. Normally tinnitus sounds like buzzing or ringing, or even sirens for me. But at the moment, it sound exactly like my hearing aid feedbacking.

Interesting...

2009-03-18T18:26:00.002-06:00

Well! I decided I was going to vacuum the carpeting throughout most of the house today... I had my iPod on, listening to music as I vacuumed up the dog hair and dog toy guts off the floors. Made my way down the stairs, vacuuming each step. Finally got downstairs and continued with the vacuuming, jamming to the songs on the iPod. Soon enough, anytime my right ear got close enough to the vacuum as I bent over with the hose to suck up any more toy guts and random junk from hard to reach spots, my hearing aid turned off! What the heck was up with that? I have never experienced this before. It did it again a few more times as I finished the vacuuming job. I don't know if it's a telecoil thing and there being something in the vacuum cleaner that messes with it, or if it's the hearing aid in general freaking out. Like I said, never experienced this before. Was quite odd though!

Insurance update

2009-03-13T17:21:00.004-06:00

I understand that you are interested in the Wyoming Health Insurance Pool coverage and are wanting to find out if a cochlear implant would be covered. Pre-existing conditions are not covered in the first 12 months unless you have had previous insurace within the last 90 days. If you meet the low income requirements and qualify for the coverage, the cost for the plan would probably be either $368.20 or $504.20 per month, depending on the plan you choose. After you have been on the coverage for 12 months, a precertification would have to be done in order to deterime if this specific procedure would be covered.

There is just no way I can afford the $368 plan. That is like one entire paycheck, and there is just no way I can get by the rest of month with the 2nd paycheck alone to pay all my bills and car insurance, oh no. That's just not possible for me. Maybe if I had another part time job, MAYBE. But I haven't had any luck of finding a part time job that will be flexible enough with my current work schedule and such, and be willing to accomodate my deafness (no phones, not having to deal with customers, noise-free or as little noise as possible, etc.).

Looks like the CNI CI Assistance Program and fundraising is my best bet right now, that is if the CNI does accept my application. I shall be proceeding with the CT scans, new hearing test and whatever else needs to be done so I can apply to the program.

Update

2009-03-13T14:34:00.002-06:00

Got a response from Rocky Mountain Ear Center today!

Hi Meghan,

I have received your medical records. Dr. Kelsall said that he would see you at no charge after you get your ct scan. When you decide where you will get your scan and decide how you will pay them, please let me know and I will fax ct scan order to them.

Thank you,

Johnnie

That's awesome. So now, I'll probably call the imaging center again, verify the costs, then work on saving up the money for the CT scans. I just sold another item from my half.ebay.com store, so I've made quite a few sales in the last 3 weeks or so, which is awesome. Mostly it's the DS games and DVDs that are going, but hey that's great! That's a little money going into my bank account.

I also stopped by the local BCBS Insunrance office, and talked with the receptionist about my phone call predicament. I left her my email address and she'll give it to the person who was researching coverage plans that covers the cochlear implant, so hopefully I'll hear from the representative soon enough.

Am still very slowly working things out, but I'm working on it! And I'll keep working on it.

Phone call frustrations!

2009-03-11T15:50:00.001-06:00

Oh how frustrating is this! The Blue Cross Blue Shield insurance guy called back the other day, and left a message on the machine. I have played the message a couple of times but I cannot understand the message. I couldn't catch his name or the number he left, or anything else he said. So frustrating! And I'm the only one at home until the 19th. Right now, I'm on a relay call with the BCBC of Wyoming, and they're going to try to get me in touch with the representative that has been researching affordable plans that covers cochlear implants, but blah. The call got rerouted a few times and I ended up with someone from the Cheyenne office. Oy! So incredibly frustrating. I hate that I can't make sense of the message, I hate that I'm making this Cheyenne representative do "extra work" just because I couldn't get a name of the representative doing the research. I'm surprised the Relay Operator is still handling this call haha. It's been over half an hour now, and I'm on hold yet again while the Cheyenne representative calls the local office.

If I could at least get the stupid Cap-Tel phone to work at home, I'd try using that to make phone calls. But no, ever since the Qwest phone company came over to the house 2 years or so ago and did something, none of MY phones have worked. I've tried plugging them into different phone outlets throughout the house and nothing. I don't know why. I have two different phones that are for the deaf (the Captel, and one from PlanetAble), and they both don't work. Most certainly isn't the phones, it has to be the phone line. I've mentioned this to mom and stepdad several times in the last few years but nothing has been done.

Well, at least I finally got our home number removed from Omaha Steak's call list. They have been calling our house at least 2 times a day on a daily basis. No one in the house ever answer their calls (we just pick up then immediately hang up on them). I went online to the Omaha Steaks website, and found an email address. Shot off an email and requested they stop calling us! They removed the number from their list, finally. No more obnoxious calls from them.

Oh, off hold. She's telling me I can stop by the local office and talk to them. Ok. I'm not exactly sure where this street is, but I can look it up, no problem. Oy. Will have to look up the address online, and try swinging by sometime before going to work tomorrow or the next day. Maybe I can get them to start emailing me information from now on, instead of leaving messages on the phone. That would be so much easier for me. Golly!

Well, that relay call lasted almost an entire hour. That's the one thing I don't like about relay calls, they take longer.

Medical Records!

2009-03-05T18:15:00.003-07:00

I have finally received my medical records from Sheridan hospital. And they sent EVERYTHING, and I do mean EVERYTHING. I requested for any files from Nov. 1987 that documented the meningitis.. but they also included my birth records, but hey, that's completely fine with me. Was interesting to go through all the notes. Most of the records are from when I was hospitalized and treated for the meningitis. Very interesting stuff! Even my mom went through the notes, and "relived" the experience. Made comments of some of the notes ("duh" kind of comments, was kind of funny). I'm glad to have the records now. Now I have every detail of the meningitis episode, all the blood works they did, CT scan results, medications and treatments, every diaper change, EVERYTHING.

Now, will have to get a file box to store my medical and audiological records in, so they don't get damaged or misplaced.

Audiological Records!

2009-02-24T22:51:00.003-07:00

Right on! I got the audiological records from the UW Audiology Center in the mail today. I was rather excited, as I have never seen any of the testing results from them. There's records in there from 1988, 1994, and 2000 (1988 when they accurately tested my hearing loss, 1994 for a new pair of hearing aids, and 2000 for the Claro hearing aid). That was pretty fast. I read through the notes, I was really interested in it. Great, 1 set of records to put in my files! Now, to get the hospital records of my meningitis fiasco. The ABR results are included as well, I've never seen what an ABR mapping or result looks like. Very interesting, indeed!

Went over to the deaf school library to visit with Jo. I came home from work first, and grabbed the 2nd informational packet of AB's Harmony implant. I already had 1 packet, but AB sent me another packet. I don't need 2, and the spare one has been sitting in the basement all this time. Finally, I got around to taking it with me to the library. Now Jo can catalog it. She says she doesn't have any information on the new implants in the library, so she's happy I brought in this spare packet. Was fun talking with her for a bit. She was telling me a bit more of WYHI that's happening on Friday, and I'm planning to go, just for socializing. Any chance of being around other deaf people, kids or adults, I'm going to go if I can! Will have to go to work a bit earlier on Friday, and get the main stuff out of the way, go to WYHI (this time it's in the afternoon, instead of starting at about 10 and going on until 2ish), then return to work to finish the rest of the calendars and possibly even the fire calls.

Insurance Info Update

2009-02-23T18:01:00.001-07:00

Woot! Finally heard back from the insurance guy that was doing research.. He called and spoke with my mom and mom shared the info with me.

The personal insurance through BCBS, that covers the implant, would cost me over $700 a month.... errrrgh.

But he thinks it might be possible to get me on the disabled insurance plan, and that one would be $150 a month (that I could afford).. but he's still doing more research.

Even if I did get the insurance, because deafness is a preexisting condition, I'd have to be on the plan for 9 months before I can even ask them to cover the implant.

I'll keep waiting to hear from him, and figure stuff out. And I'll still try some fundraising so I can get the money necessary to finish out the tests and stuff (Ct scans, hearing test, whatever else), doctor's visits and all that jazz, and even apply to the CNI CI Assistance Program as well (just in case the insurance plan doesn't fall through).

Awaiting another response from him.

Still browsing options

2009-02-23T14:31:00.003-07:00

I'm still trying to figure out how to get fundings for the implant. Some folks at hearingjourney.com encouraged me to have the local newspaper do a personal interests story to generate interest from the public. I still need to discuss this with my supervisor, see what she says.

I know PayPal has a Donation button, so you can make a button, and post it wherever you please to accept donations from interested individuals who might like to donate. I've considered that, and even made up a website. I have no idea if that would get me any results, but who knows. Couldn't hurt to try, right? The website is: http://www.wyomingdeaf.com/ci/index.htm
I'm also selling items through my half.ebay.com store to earn some money for the implant fund as well (so far, have sold 1 item yesterday, and I am still slowing adding more items to the inventory). I may even auction items on eBay.com, items that I can't sell through half.ebay. All fundings I earn somehow will go directly into my savings account, and I'll only use that money for anything related to the cochlear implant process (CT scans, hearing tests, any other testings, the actual procedure, and follow-ups). I also have a small portion of each of my paychecks being deposited directly into my savings account (my paychecks average around $300, and since I have bills and other things to pay for, I can only afford to do maybe 15-20% of each paycheck deposited into my savings).

I have contacted different organizations for ideas... Not very many useful advice or results yet so far, but I'm still browsing and figuring things out.

Do any of you guys have any ideas?

She'll never truly understand

2009-02-19T17:55:00.001-07:00

and I'm offended all over again. My mom is just so infuriating! She's hopeless when it comes to discussing options in regards to MY deafness. "You should consider ALL the options out there, not just one." Uh I have thank you very much, and it's still a NO on the hair cell thing. "You get that "being deaf has its perks" thing from Jo!" No I do not. I've discovered the "perks" ages ago. Jo just UNDERSTANDS where I come from and even agrees with me, whereas mom doesn't. Jo's been deaf all her life, so it's just a lot easier to talk to her about anything deaf, and with my mom it's just impossible. "I understand being hearing would be a lot to take in after years of deafness" uh exactly how would one who might have gone through the hair cell regeneration get a break from HEARING if they needed one? "See, with the implant like that lady on the HBO show, she took too many breaks and it didn't work for her!" Duh, not EVERYONE is going to be like her, everyone progress with the implants in their own way on their own time schedule. But breaks would still be necessary, to let the brain sort out what it just had to deal with. That's it, I'm done discussing ANYTHING with mom about this. All she does is just offend me (even though she doesn't mean to) and infuriate me, no matter what.

I even told her if there was absolutely no hope of having the left ear implanted, I would do the right ear "oh so you'd risk losing what hearing you have left?" Yes. If the implant can help me to hear better than the hearing aid, great. I'm perfectly aware of the risks. But with technology getting better, the losing whatever hearing is left risk is not as big as it used to be. I am willing to take that chance. "What if the implant doesn't work?" so be it. I'll deal with it. It'll be tough but I'll deal with it. Even the CI audie in Denver said there's a really good chance of the implant working for the right ear (not so sure of the left ear, when we did the hearing test it was absolutely 0 responses.. could be cause of ossification, who knows). I'd rather take the audie's word over my mom's on chances of it working. Something could always come up and something could go wrong, but I'm still willing to take that risk.

Mom says she has accepted my deafness and loves me for who i am and all that stuff, but it's just difficult when she points out all the stuff that I have already considered. What does she think I am, dumb? I've done my research, for YEARS. I've talked with various CI users, in person and online. I've questioned the CI audie in Denver from time to time to get answers. I've been doing all this since I was in high school when I first started exploring the cochlear implant option. I'm confident in going with the cochlear implant option. I just wish she would quit badgering me, and respect my decision.

To cure or not to cure...

2009-02-18T18:23:00.003-07:00

Tonight, I informed my mom I got the medial records release forms sent off. Then mom started off on how she doesn't understand why I couldn't wait a few more years for the hair cell regeneration... What? How many times do I have to have this discussion with her?

I'm not looking for a FULL-OUT cure to deafness. With a cochlear implant, I'm still going to be deaf when it's turned off. With the hair cell regeneration, I'd be hearing again, 24/7. I don't want that. "Then what do you think the cochlear implant is, not a cure?" In a way, it's not. Yes, it's another way to hear, a better way to hear than with hearing aids, but it is still NOT a cure, like the hair-cell regeneration would be. I hate having this sort of discussions with my mom. I know she wants for me to be hearing again, hearing well and keeping up and all that jazz. But I myself, do not want the magical miracle cure that would make me a totally hearing person again. I really don't! "You get all these ideas from Jo!" Uh actually, no I don't. My brain, my mind, my thoughts, MY FEELINGS. I mean, Jo understands where I'm coming from, she really does, and she's deaf herself. She herself wouldn't want to go for the full out cure either (she might do the hair cell regeneration in 1 ear if it was available and truly does work, but thats it).

I don't even see how hair cell regeneration would even work if the cochlea is ossified.. It's bony substance, how would the hair cells grow back? In a normal non-ossified cochlea, I can see that happening. But what about the ossified cochlea for those who have had meningitis (ossified cochlea is common among those who have had meningitis). I don't know. But, it's talks like the one we had tonight where I end up feeling offended by my own mother because she truly doesn't understand. She says she "gets it", but I don't think she really does. And no one even really know how long it will be before the hair cell regeneration would even be available, it could be years! Why wait YEARS, when I could work on getting a cochlear implant and possibly have it however soon I can get one? The cochlear implants are available NOW, and they are constantly improving technology and doing what they can to make sure the new processors will work with older implants. And once you take off the processor, voila deaf again.

Yes, I've struggled with being deaf, and get frustrated. But, I just could never go for the all out cure where I'd be perfectly hearing again. I don't want that. I've accepted deafness, it's a part of me (even though there have been times when I've hated it). But I just wouldn't do the hair cell regeneration. I'm sure I'm not the only deaf person who feels this way.

This post probably doesn't even make much sense.. I don't know. Mom keeps telling me I was making no sense tonight when we were "discussing". Oh thanks a lot. I'm just offended that she would think I should wait it out and go for the all-out cure, when I have told her several times in the last few years I DO NOT WANT THE CURE.

Medical Release Forms

2009-02-17T17:43:00.003-07:00

Wowza! After I got done with work, I drove straight down to my audiologist's office. Finally got the earmold tube replaced, and I filled out a release form so they can release my records to Rocky Mountain Ear Center. Then I came home, printed off the response email so my mom could read it and know what's going on. We talked about it some more, told her I'm still working on finding funding and stuff like that. She says she thinks she has a copy of my medical records from Sheridan Hospital somewhere, but she's not positive. I told her I knew where to get the hospital's release form online, I could just print it off, fill it out and fax it to them. I should have a copy of those records in my files anyway, you just never know! Printed off 2 copies of Sheridan hospital's release form, one filled out so the records can be sent directly to Rocky Mountain, and the other one with the same records sent to me so I had them for my files. I also emailed the Hearing and Speech Center at the University of Wyoming, asking if they had such a form that I would need to fill out. They are the ones who have dealt with most of my audiological needs since I was 2 or 3, outside of the local school district's audiologist (my current audiologist has at least 2 of my "recent" hearing test results from the school district). I just want to get all that stuff sent off to Rocky Mountain so that the doctor can review them, and then he'd know what I should do next.

Once they get all of my records from everyone and have reviewed them, hopefully from there we can continue on, repeat the hearing test, get the CT scans, and whatever else is involved in the process. Then I should be able to fill out the application for the CNI CI Assistance Program and wait for a response from them. And while doing all this and waiting, I'm going to work on figuring out the funding aspects.

Great, got a response!

2009-02-17T15:19:00.004-07:00

Got a response from the person I've been in contact with about continuing with any sort of testings/follow-ups to verify my candidacy for a cochlear implant.

I have spoken to my office manager regarding this matter of the ct scan and follow-up here with the audiologist and the appointment to see Dr. Kelsall and this is what has to be done at this point. Dr. Kelsall will have to approve the ct scan and any future visits, since you are a self pay patient, this is a office policy. I see that you have been seen at Alpine Hearing Care, we will need you to request your medical records be sent to us so that Dr. Kelsall can review them and I will also give him your cochlear implant evaluation that you had with Allison Biever on 09-17-07 and then he will inform me as to what to do from there. I spoke to Allison and since your evaluation was in 2007, you will need to be seen again for a hearing test. You will not have to repeat the complete evaluation, but the hearing test will let us know how your hearing stands since your last testing with our office. If the doctor gives me approval to continue, you can let me know where to send the order for the ct scan and you will need to discuss payment with that facility, and I will need to know how payment will be made for the appointments that you will need from this office.

I understand that it has been explained to you from the assistance program that even with assistance, there is still a large amount of out of pocket that is due from the patient. I am not trying to discourage you, I want to help you to understand what all is involved so you will know what to expect.

I still have my hearing aid money in my savings account (which I was going to use to pay for the Naida hearing aid, but didn't as I returned the hearing aid by the end of the trial). Perhaps I can use some of this money to pay out of pocket for any appoints with Rocky Mountain Ear Center, to pay for the CT scans. As for costs that doesn't include the actual implant device (that is, if the program should accept my application and help), I'm working on that. Have contacted a couple of organizations (the local Lions Club being one of them)... Have gotten a response back from 1, and she gave me some resources I could look into. Hopefully we'll get somewhere. I shall keep working on this, doing research, discussing with my mom, and trying to get going.

I've been meaning to stop by my audiologist's office anyway, as I do need a new tube for my earmold (the current one is stiff and just blah!). So I can have them fax over my files they have. I'm also working on getting my meninigtis records from the hospital that treated me (just need to finish filling out the request form and actually get it sent!). I had a copy of my meningitis records once, which I used for a presentation/project I did on meningitis in 7th grade; not sure what happened to them since then.

CNI Assistance

2009-02-16T17:38:00.002-07:00

I went back and looked over the application for the CNI CI Assistance Program, and for sure I would need to have all of the necessary testings to be deemed a candidate completed (hearing tests, CT scans, etc.) before I can even send in the application. And since it's been a year and half since I did the hearing tests at Rocky Mountain Ear Center, I don't know if I would need to redo the hearing tests or not, but I'll find out. The person I've been in contact with at RMEC keeps telling me to send in the application, then let her know of the result, but I can't as I need to get all the testing done. I don't know how much experience she has with the CNI's application process (Dr. Kelsall does, as he helped create the program). If only I could just get in direct contact with Dr. Kelsall. I'd contact the audiologist but I'm sure she's busy with other patients.

I'm sure all the testing will cost money, but I'll find the money to pay for them if I have to. I already have an estimated cost for the CT scans from when I made the relay call to the imaging center last year or so. I can always call them again and get a new estimate, just in case prices might have changed.

It's frustrating, trying to get all this figured out and trying to get on with the process. Hopefully we can get all this sorted out, and I can complete the testings to be deemed fully 100% a candidate (I was deemed a candidate just based off the hearing test results, but have not done any other testings yet). Then I can fill out the application, get all the paperwork necessary from the entire CI team, and send it all in. Then I would wait while the program went over the application and made their decision.

Right at this time, this method is the only possible method that could possibly work out and I could actually get the implant (that is, if the program accepts my application and will help me). If the program doesn't work out, then I'd work hard to find another solution, a way to pay for everything.

Randomness

2009-02-09T12:51:00.003-07:00

Right on, I can see properly again! Yesterday, my mom and I had a girls day. We drove around, looked at a couple of houses (we're house hunting for my sister, as she and her husband [and little boy] will be moving back here in June), then headed over to Walgreens. Mom needed some random stuff from there. It was inside Walgreens when I realized my glasses were broken, again. The frame right around the lense broke. Same place as last year when it broke, except on the opposite side of the nose. Oh brother. Must be some weak frames or something. Went on the rest of the day without glasses on, which wasn't too bad. We went to the mall, had lunch and then saw "Marley and Me". Good movie, I enjoyed it! Good thing I read the book just in the last 2 weeks though, otherwise I wouldn't have understood it as well. Lately, I have been trying to read the books before seeing certain films (read the story before seeing The Curious Case of Benjamin Button, read Marley and Me before seeing it, same with the Harry Potter series, etc... Films don't always follow the books 100%, but at least I get the general idea of what's going on whe I see the film in theater.. with the X Files movie, I read the book afterwards and it made a lot more sense to me!).

Am still figuring out how to go about getting back on the CI track. Got a response from someone at the CI center asking how I would be paying for the CT scans (out of pocket of course... when will I ever get insurance? Hm!). I'll just have to really save up some money. Perhaps part of my tax refund will be used to pay for the CT scans, who knows. For sure, part of that refund will be used to pay for new glasses (and to pay off the credit card bill... sorry Mom, HAD to use it!). I know I'll get enough money saved up though. Then we'll go from there I suppose. Get the scans sent off to the doctor in Denver, maybe someday make a trek down to Denver (I don't see this happening for quite a while though, unless I'm willing to pay over $100 to hop a bus to Denver and find some way to get around Denver... err confusing). Next month, mom and stepdad will be flying off to Ireland, then in April we may possibly be flying out to North Carolina (depending on what my sister decides). Then May, there's Mother's Day at the flower shop. June, sister and her family move back and we will surely be helping them with the move. I'll have to talk to them and see if something can be worked out though. I'm still too much a wuss to attempt driving down to Denver myself. If I could go with someone, and we had the GPS navigator, it'd be manageable.

Got my glasses fixed today, and will have a new pair ordered soon enough. I've had my current pair for a couple of years or so, and with two breaks by now, it's time for a new pair. My prescription (which I got last year after getting my eyes checked since I was extremely sensitive to lights) is good until 2010 so might as well get the new glasses. I definitelly needed to get the old pair fixed though, otherwise I would have struggled through work, skipping lines and messing things up, which would have been bad.

Thoughts

2009-02-05T15:10:00.003-07:00

Just lately I've really been thinking of the cochlear implant path, and of wanting to get back on it. I've contacted at least 3 different contacts about getting back on track. Contacted the CI Center in Denver to see if it's wise to get the CT scans done, that way the doctor can look over the scans, then help me fill out the paperwork for the CNI CI Assistance Program (the application would need like a letter from the doctor, audiologist, etc.). Makes sense, right? Then I can send in all the paperwork to the program, and get word back from them on if they'll help. I also contacted the person I had been in contact with about funding for any part of the process (if the program will for sure donate the implant, person can help me find funding to cover the hospital/surgery/etc. costs). I still have the relay call from when I called different local MRI/CT imaging centers about approximate costs and still have that information. I just filed my tax return, and should be making a bit more money now that I can work up to 29 hours a week. So I would think I could afford the CT scans more easily now. So why not get going with the process?

For now, I'll just play the waiting game, waiting to get responses. Then get the CT scans taken cared of, and have the doctor look at them and find out if there's any hope at all of implating the left ear. If there's no hope at all for the left, I would consider the right, even though I know Mom worries the procedure won't work and I may be left completely deaf for life. I'm aware of that risk. I do want to at least get the scans done, and go from there. Get things figured out.

When I temporarily left the CI path to try out Phonak's Naida, the CI idea never left my mind, ever.

Random Ramblings

2008-11-04T01:04:00.004-07:00

I swear, I'm still here! I haven't vanished. I've just been keeping busy, and I also kind of forgot about this blog for a while there.

I'm ready to get back on the cochlear implant path again. The Naida just did not work out for me, and after doing some research and pestering some audiologists online, I felt other hearing aids like Oticon's Sumo probably won't make much difference. And I still want to find out for sure if there is any possibility of implanting the left ear. Now if I can just save up enough money for the CAT scans, and find the name of the imaging center that had given me the price estimate and whatnot... I just may have to make some relay calls again.

In terms of insurance, I still have none. But just very recently I have gotten to thinking of my future.. Do I even have a future with my current job at the newspaper? It doesn't seem like so. Since I am unable to use the phone, there's just not much else I could do at the newspaper. So I am considering finding a new job, a full-time job that offers benefits. That would really help with the process, for sure. And it would just be nice to have some extra money. I mean, there is no way possible I can even think of moving out on my own with my current earnings (which is barely $300 per paycheck which I get every other Friday and most is spent on bills/personal necessities/dog care). I'll be discussing this with my counselor on Wednesday, figure out what my next step should be in getting on with my own life, that sort of thing.

I've had my crazy dog since July. Adopted him from the Humane Society. He seemed like an alert and smart dog. He is pretty alert to sounds around him, and he is smart but I'm just clueless with the training process (still working on getting in contact with a dog trainer). Anyway, he does bark at me for attention, but he's realized that I don't always hear him bark, so he finds other ways to get my attention. He can be so obnoxious when trying to get my attention! In the mornings, I'm still in bed, but he's awake and bored. Finally he's decided he's had enough of waiting on me, so he starts bouncing on my bed to wake me up, and getting into my face. Urgh! And when I'm at my computer, he nudges his nose into my hip or jumps and bounces off the back of my chair and he even does this weird little... dance. He drives me crazy, and yet, I love him like crazy. He's my boy!

Cord problem solved!

2008-09-17T15:27:00.004-06:00

I think I finally solved the extremely LONG cord problem of my Hatis Epic ear hook that I use to listen to music with... it works pefectly with my hearing aid and I LOVE it, but the cord is so freakishingly long it drives me crazy! But today, I grabbed some post-it sticky notes, rolled it up, then wrapped the cord around it. Then I taped it all up so it would stay on instead of unraveling. Now I don't have all this extra cord hanging down near my feet anymore (or having to wrap it around my iPod every so often, since I do use the ear hook with the computer and DVD player too). Problem solved! I think. I hope!

As for the Phonak Naida hearing aid, I have given up on it. I decided it just wasn't worth the time or money. I hate having to open the battery door to turn it off, and I hate how slow it is to switch programmings on it. On the Supero, there's the on/off switch, which I use several times a day (if I'm on program 3, which is Telecoil, and I want to get back to program 1, I just turn off then turn on the hearing aid, which is real quick! Quicker than pushing the 1 button on the remote too, even!). With the Naida, I'd have to fuss with the battery door, fight with it until it opens, then close it, then wait oh about 5 seconds for it to turn on. And switching programs, it plays this odd little tune in between and is just slower than the Supero. I'll stick with the Supero for the time being, until something else comes along that might be even better, and has an on/off switch!

Oh, and as for my tinnitus... I am once again hearing a dog barking in my mind when I don't have my hearing aid on, but it's not my dog barking.. My dog would be sleeping or just being quiet while I hear this "barking" going on. I used to experience this with my first dog too. It's kind of funny, and odd.

Me and my ideas

2008-08-27T15:28:00.003-06:00

Oh wow. Almost the entire summer has gone by, and not a single post from me. Whoops! Have been keeping myself busy, working, traveling, volunteering at the Humane Society a few Sundays, and even adopting a dog!

Anyway, about this idea of mine. I don't know, maybe I'm just crazy or something. I'm sitting here at work, IMing with a friend of mine on MSN messenger on my Sidekick3, and I just came up with this idea. I am going to two concerts this fall, one next month in Minneapolis and another in Denver in November. Both will be Hanson concerts (yes, I'm a Hanson fan and I'm not ashamed to admit it!). Wouldn't it be funny and fun if a group of deaf people showed up at the concert, communicating in ASL and just making the hearing people curious and whatnot?

There are still plenty of people who are clueless as to how deaf people enjoy music (or even get by in life with their hearing loss). Still, from time to time, I'll be asked "how can you like Hanson if you can't hear the music? Do you just like them for their looks?" "You're deaf and you love music? How can that be?!" I have to explain that it is very well possible for deaf people to enjoy music just like everyone else. Some may not actually HEAR the music, but they can feel the beats and vibrations and enjoy it. And some do hear and enjoy the music and the lyrics. And some may just prefer listening to all instrumental music, having difficulty hearing words in songs. Just because someone is deaf doesn't mean they can't enjoy music, right? Right!

I just got to thinking, it'd be fun if I could get a group of deaf people to attend the Denver concert (I could try it for Minneapolis too, but that's coming up pretty fast and I doubt there'd be enough time for everyone to book flights or plan roadtrips, while Denver's concert is still some time away). Hanson will be doing their one-mile walks a few hours before their concerts (something they've started doing last year, they do these walks to raise awareness of AIDS and poverty in Africa and to encourage people to take action and support any causes), and I'm sitting here imaging a group of deaf people walking with other Hanson fans, but communicating in full out ASL (or just sign language, some of us Wyomingites are PSE users), and just getting people curious and wondering what's going on. It could be a way to show hearing people that deaf people can and do enjoy music, and they can support different causes and that sort of thing. I don't know if this will actually work out, if it'll actually happen. But it's still fun to imagine and think about it, wonder what the outcome would have been like.

If this is possible, getting a group to go to the concert, I wonder if Hanson or the club where the concert is at would be able to do something special for the deaf concertgoers? I remember a few years ago when a band, I believe it was Simple Plan, who set up a loop system or something like that for a concert they did in Canada (article), so that the deaf concertgoers could hear the music and enjoy the show and have a great time. Too bad this doesn't happen for more concerts. For myself, if I can just get close enough to a speaker, I can take off my hearing aid and hear the concert music just perfectly (as I have discovered in August 2004 at a Hanson concert in Kansas City, MO.), and not have to listen to the audience as much (with the hearing aid on, it's just all 100% noise and echos and just chaos, ew). But that isn't going to work for every concertgoer, depending on their level of hearing losses and such. Hm. If there was a loop system in place for more concerts, or a device of some sort to allow the deaf concertgoers to hear the music the band/musician is playing, I'd surely take advantage of it!

So frustrating

2008-05-31T16:46:00.004-06:00

I got to talking to my mom about the Naida hearing aid while we were having dinner at Red Lobster last night, and it's made me think... Right now, I haven't noticed any improvements with the Naida (being better than the Supero). I guess, once we get the replacement Naida in at the audie's office, I'll give it a try with adjustments for a few more weeks. And if it still doesn't prove to be any better than the Supero, even with further adjustments by the time the trial is up, that's it. I'm not going to spend money on a brand new hearing aid if it doesn't prove to be any better than the Supero for me. The past 3 weeks have been rather frustrating.

Sometimes new is not always better. Right now I'm still hoping with the new Naida replacement, things will improve, soundwise and all... it needs to actually be of more benefit to me than the Supero, and right now I'm not noticing any benefits. Hopefully we can get the replacement Naida working. I've sent off an email to my audie just a few minutes ago, so he would know of my thoughts on this.

I've worn Phonak hearing aids for 20 years now. And they all have been beneficial for me, up until now. I am still very dependent on visual support to make sense of what is being said, no matter what. Maybe if the Naida doesn't work out, perhaps it's time I tried a powerful hearing aid from another manufacturer, see if there's any difference, if there's any improvements to my hearing or not. I don't know if the Naida is the most powerful hearing aid out there, or if there's another one that's perhaps even better. I have basically no knowledge of the other manufacturer's products. We'll see what my audie says.

I've also decided I'm going to return the new remote. I used it the first few days I had the Naida, but since then it's been sitting on my desk. I prefer the old remote's functionality. With the old remote, you can just push one button for the desired programming (button 1 for normal setting, button 2 for noise setting, button 3 for telecoil, FM button, FM+M button). With the new one, you have to push the < or > button repeatedly until you get to the programming you want (normal/automatic, calm situoation, calm in noise, speech in noise, telecoil, FM). Eh, I just don't like the new remote. So I'll return it, and ask for a Dry and Store instead. The old Westone dry aid cannister isn't cutting it at all.

Ran into a friend

2008-05-23T14:27:00.003-06:00

Well, I got up and very slowly got going. I was seeing my audiologist today so I could tell him what the Naida has been doing. I got to the medical complex where his office is, and entered the waiting room. Well, what do you know. There was my friend and enemy from the school years. That's right, friend and enemy. She's deaf too, a few months older than I am. Throughout our school years, we'd be friends for a few days, then we'd be complete enemies. Of course, it was nice that there was someone else at my grade level who was deaf and also signed, but we just didn't always get along. It wasn't too bad when we were at the deaf school, as there were other deaf students to be friends with as well. I do recall the times when we fought in middle school. Oh, those were not good days. Then in high school at Star Lane, I always hated how we'd end up in the same tutor group every so often, just because we're both deaf and needed an interpreter. The one year, where I was at Star Lane in the mornings, and she was there in the afternoons, oh that was great.

Everyone have their own persnalities and characteristics. This person though, she definitely had quite a few that I didn't care for while at school. But now that we're out of school, I've got my job and am just living my life and she's got her own life and her own family. I have no idea if she still has the same characteristics as she did in school, I have hardly spoken to her in the last few years. But it was just odd, seeing her waiting in the waiting room. I had no idea she saw the same audiologist I did. No idea at all. But it was nice, we sat and just visited for a few minutes. Of course, my signing skills have gotten rusty as I don't sign much anymore (who am I going to sign with?). Who knows, maybe we'll hang out sometime.

As for the Naida, well, no adjustments has been made today. And no new earmold either. But, I did tell the audiologist what was going on with the hearing aid, and of how music still sounded too odd and different that I still couldn't enjoy it. He's going to call Phonak, and even send them a fax of what adjustments he's done to the hearing aid, so hopefully they'll be able to give him some ideas. I also now have his email address, which is great. Now, anytime I have questions or concerns, I can just shoot him an email and he'll get back to me directly. No more receptionists getting in the way, delying things even further.

Dead?

2008-05-19T12:07:00.004-06:00

And now the Naida seems to not work at all. It was working fine last night. But today, nada. Hm! I've only had it a week and half too. Changed batteries and all, nothing. At times, I will hear something, but it's incredibly quiet. Other times, absolutely nothing. What is going on? And I don't see my audiologist again until Friday. How frustrating. I did email Phonak about this though, to see if they had an idea of what could be going on. I'm starting to think maybe I should just stick with the Supero. So frustrating!

EDIT: Oh wait... NOW it works. What the hey? For half an hour today I fought with it. Played with the battery door and all, and mostly got nothing. But now, I heard it turn on and feedback, and I was wearing the Supero. Grr! We'll see how the Naida works today, and I'll have the Supero with me for back up, just in case something happens.

Buzzzzzzzzzzzzzzz

2008-05-17T22:13:00.002-06:00

Tonight, I was just playing around on my computer. Then I realized I was hearing a buzzing sound. Where the heck was it coming from?! Then I got to thinking, "is that my computer buzzing?" I think it was. With the other hearing aids, I've always heard my computer making noise, with the fan going and all. I think it was the fan in the computer I was hearing, but I have never heard it as a BUZZ before. That was rather strange for me.

Definitely not understanding speech well yet. Mom's been having to repeat herself frequently, and I'm still really needing to lipread. Hm! Will talk to my audiologist whenever I see him again. I'm kind of waiting until my new earmold arrives at the office to see him again.

History of technology for my ears

2008-05-14T18:09:00.005-06:00

Thought it'd be fun to post pictures of all my hearing aids and FM systems for this blog.

My very first pair of hearing aids ever! Or perhaps my second. I'm not too sure.

My lovely old purple hearing aids. Oh gosh, I remember being so proud of them in the 3rd grade at school. None of the other students at the deaf school had colored hearing aids. By about mid-4th grade, I stopped wearing the hearing aid in the left ear, as I realized I never heard anything out of the left ear with it on.

The Comtek FM unit my grandparents got for me. I used it a bit, at church in Sunday School and whatnot. But for the most part, after I had gotten a discman, I used the neckloop to listen to music. The Comteks hardly ever got any use. And we used the school district's Comteks all throughout school. Comteks were used as the school audiologist felt they were the most powerful FMs to use.

The Claro, my first digital hearing aid ever. My interpreter (she's deaf herself, and is now a very good friend of mine), she had gotten new Phonak hearing aids while I was in middle school. Programmable hearing aids. I thought they were so cool, I wanted them for myself! Ended up with the Claro as they were brand new at the time.

The FM transmitter that I also got to go with the Claro. Tried it at school, didn't like how it worked (the signal wasn't strong enough). But wonderful for listening to music with! I then ditched using my personal neckloop and used this FM transmitter, plugged into the discman. I still use it today, on my portable DVD player and at the computer.

The Supero, far more powerful than the Claro. Every time I had to switch back to the Claro so the Supero could be repaired, I was always shocked at how quiet the whole world sounded with the Claro. Wow.

And now, the Naida, Zebra-style! I had already done the different colored hearing aid... now, I wanted something more jazzier, the Zebra. It's pretty neat looking, and I like the new FM shoe too. Much better than the FM shoe I had for the Supero, for sure.

My remote controls. The white one is new, and very nice. The old one, I've been using it since I got the Claro. And only once out of 7 years the battery has been replaced, just ONCE. It's been a good old remote, even though I've dropped it and lost it on several occasions.

And that is how I listen to music now. I've decided I was going to use the Hatis Epic ear device for music only. The HandyMic transmitter has been damaged several times and replaced 3 or 4 times since I first got it. After the last time it was sent in for repair, I got the Epic. With the FM, volume will be maxed out on the DVD player or CD player, and sometimes I would even have to turn the volume up on my hearing aid to hear. But with Epic, the first time I turned on my iPod, I just about blasted my ear off and had to turn down the volume on the iPod. And the Epic is a lot more convenient for traveling. FM, I have to bring the charger for it when traveling, and it gets to be a pain to have to charge it up.

And now, I shall stop rambling. :)

Switching and FMs

2008-05-12T18:19:00.002-06:00

Hm. Guess I'll be switching hearing aids tonight. I'll wear the Supero so that I can use the FM only setting to listen to the movie on my DVD player and to whatever's playing on the computer. The rest of the time, I'll use the Naida so I can get used to it. And tomorrow after work, the Naida programmings will be switched from Music to T-coil, and from FM+Mic to FM only. Since I am only using the FM at the computer now... well gee, I don't want to listen to what's on the computer, AND the laundry going.

I'm rather liking the new FM shoe for the Naida. I can get it off easily, it's putting it on that will take me some time getting used to. It slides on forward, and slides off backwards. My audie changed the battery door on the Naida so that the FM shoe can fit on it right. It's pretty nice. I never did care for the FM shoe for the Supero. It splits down the middle very easily, and sometimes you have to mess with it a bit so that the contact points are touching. With the Claro, well, the FM receiver just went right into where the battery normally sits! I like the Claro FM the best. It just blends in so well with the hearing aid, you can't even tell there's an FM attached to the hearing aid unless you look at it closely.

Oy!

2008-05-12T14:16:00.005-06:00

The receptionists at the audiologiy's office are just so difficult. I've made several relay calls to them over the last few months using i711.com relay, and they are still uncomfortable with taking my relay calls. It's really not that difficult! I am not using the phone when I make these calls, I am on the internet, typing out my message to the operator, and the operater is relaying my message to the receptionist. Then the receptionist responds to the operator, operator types the message and sends it to me. Oy!

Hearing aid is much better. He took the bass-boost off. Good! Got the proper FM shoe for the hearing aid, so will play with the FM at home. But there's no telecoil setting on my hearing aid. Somehow it got switched with the music setting. I don't even know how the music setting works. I don't use headphones or blast music from a speaker. I use the telecoil setting with the Hatis Epic ear hook to listen to music, or to DVDs on my portable DVD player. Hm. I want to get it switched back to Telecoil, and switch the FM+Mic setting to just FM only. And there is no way I can wait until May 19 for further adjustments. It shouldn't take more than 5 minutes really, to just switch out the 2 programs to 2 other programs, and plug the remote into the computer so that it is updated to have the right programming options. I am not going to wait 2 weeks just for a simple little thing. That's just ridiculous.

Meh. I hate dealing with receptionists at times, especially when they are so clueless. I'm not asking for a whole half-hour appointment session. Just a mere 5 minutes to make the switches and that's it. No increasing the volume or messing with the bass levels, etc. The volume and bass adjustments can be done on another day, after I've gone a few days with the current adjustments so I can get a feel for it and figure out what further adjustments need to be made.

It's times like this, where I wish we could somehow adjust the hearing aids on our own computers, just simple adjustments. They should have a program for digital HA users to load onto their computer, and they can make their own simple tweaks, like switching out programmings and adjusting the volume a bit (with the program having a limit on the volume so some users don't go too crazy). Just little simple stuff like that. Then we wouldn't have to worry about making appointments. Just see the audie if there is a big enough issue with the hearing aid or for MAJOR adjustments, but not little itty bitty ones.

Oh it's horrible!

2008-05-09T12:45:00.004-06:00

The music, it sounds so horrible with the Naida hearing aid at this time. I had the iPod playing, and good grief. Everything sounds so different, ick. Makes me wonder if there's too much bass on the hearing aid. I have never liked bass when listening to music, and I don't like it when there's too much bass on the hearing aid. I have been taking notes, keeping track of what it is I want changed.

I emailed Phonak last night about the HandyMic transmitter working with the Naida FM receiver. Got a response today, and they said it is compatible. Good! Will let the audie know on Monday, and he could call Phonak so that we can make sure the transmitter is working with the Naida.

And I am still not used to having to open the battery door to turn the hearing aid off. All of my previous hearing aids have had on/off switches. The Naida, you turn it on by closing the battery door (with a battery in it of course!), and turn it off by opening it. I keep feeling for a switch to turn it off, then remember I need to open the battery door. Very different.

I see the captionings are working on the CW channel once again. Hm.

Observations with the Naida

2008-05-09T00:20:00.003-06:00

After reading a response from another newbie Naida user on the Alldeaf.com messageboard, I now feel a bit better about the quietness of the Naida I have on. I was starting to think maybe it was another dysfunct hearing aid, since the first one was also really quiet.

Will definitely work with my audie on Monday. If it still doesn't seem like the volume has increased much when he makes the adjustments, I'll ask him about seeing if a Phonak rep could help out. He's a bit clueless as to what to do, which is understandable. He doesn't really work with such powerful hearing aids very frequently, as most of his clients are older, elderly, and they usually order the basic easy aids that doesn't require so much fiddling around with. Heck, he's even clueless over the FM. He ordered the FM receiver, but he didn't give it to me today, thinking the receiver I had for the Supero would work. And my T-Mic transmitter is 7 years old, it's not even listed under the FM Transmitters listings in the programming, nor is my old remote control.

I'm just not used to the quiet at all. I've gotten so used to the higher volume with the Supero; in fact, I could always tell when my mom had been watching TV in the other living room upstairs everytime I turned it on (felt like a BLAST to my ear) and I would always have to turn the volume down low, but I could still hear it... the low volume was fine for me, but too quiet for my mom which I thought was funny. Makes me wonder if the volume on the Supero was a tad bit too loud, even though it didn't bother me. Keep in mind, I have no idea what "normal" is like. What a normal volume is, what certain sounds normally sound like. I've been wearing hearing aids since I was almost 3, and with the adjustments that can be made to the digitals, oh that makes the whole world sound different.

I'm rather liking the lower pitch sound though. I've always been so sensitive to high pitched sounds, that whenever I heard whistling and such, it would literally hurt my ear. But now, when someone uses the scanner at work, it doesn't bother me, I'm not hearing the high pitch electrical sounds that I would normally hear from the computers with the Supero, etc. I have yet to try our home phone. The Supero picked up a high pitched sound from the phone here at home, which made it real difficult for me to use the phone. Will have to see if that sound is still there with the Naida (never heard the sound on the old cordless phones, which is odd).

I do want the Naida to WORK right, of course. But alas, that will take some time until the aid has been adjusted right. I should know this by now... took several trips to the audie with the Claro and Supero before I felt they were right for a long enough period. Right now, I can hear, but I'm still not quite hearing and understanding speech just yet. I still highly rely on visual support to understand what is being said. But hopefully once the Naida has been fixed up right, perhaps I won't need to rely so much on visual support. Only time will tell.

I will have to say though, the new mypilot remote is quite nice. I know I can change the settings with the push of a button on the hearing aid, but I forget which number is what setting, so it's nice to see the settings on the remote and know what I am switching to for sure, even though it doesn't seem like there's any difference with the settings (automatic, speech in noise, calm setting, calm in noise). Mom and I went to Walmart, and I tried out all the different settings, didn't notice a difference. And I kept maxing out the volume with the remote too, since I just am not used to the quiet.

Today has been a very interesting day, realizing how different things sound (holy crap, even the toilet sounds different!). And I was having fun listening to the rain drops on my car when I was driving after I got the Naida. I've heard them before with the Supero, but never really paid much attention. But today, I was trying to take notice of what it was I was hearing. It was quite fun.

Telecoil still works great. I'm still using the Hatis Epic ear hook device to listen to whatever's playing on my portable DVD player. When I tried it out with the iPod, I even thought the music sounded different. I tried to find a song that I am very familiar with, so I could get a listen. But mom was trying to rush me, so we could get to Walmart. Will have my iPod with me at work tomorrow, so I can do some more "experimenting".

I still haven't paid for the Naida and everything else yet. Audie said to wait on the paying, he wants to make sure everything is working properly first. He's even throwing in a new earmold into the price I was given (the $2,145). Monday, for sure, I'll have a new mold made. The current one I have, I got it last summer. Another audie had it made, and she ordered the skeletal mold. As usual, the top of the mold irritated my ear and caused pains and sores in the top part of my ear, so I clipped the top skeletal part off the mold. Right now, the mold is smaller than a half-shell. A new mold would be a good idea. With the old one, I always have to mess with it until it feels like it's in right, and it's easy enough for the mold to get dislodged or twisted around in my ear.

I should be taking notes of what I think needs to be adjusted, just so I don't forget anything on Monday.

Hearing Aid Day!

2008-05-08T13:23:00.003-06:00

Got the new Naida hearing aid today. Everything does sound a bit more quiet than usual, but I am hearing. Everything sounds different as well, more lower pitched and such. Already mom says I sound different when I talk, not as high pitched. Will see the audie again on Monday, make sure everything's working ok, and he'll make more adjustments as necessary too. Will probably also have him make a new earmold as well, as mine is kind of funky (he says he'll also throw in the new mold with the price). As for using the FM system that I had gotten with the Claro digital hearing aid 7 years ago, I don't think it's going to work with the new hearing aid. It didn't list the T-Mic transmitter in the computer at all when the audie was setting up the new hearing aid. I kind of figured that though, as the T-Mic is pretty old and Phonak doesn't seem to be making them anymore really. Will definitely do some playing around over the weekend, see what sort of adjustments need to be made, etc. One thing that is REALLY nice though, is way far LESS feedbacking when I put my hand up to the hearing aid, as compared to the Supero. Real nice, not having that annoying feedback.

Will definitely have to do some playing around with different settings and such over the weekend, and take note of what I think needs to be adjusted. The new mypilot remote is pretty nice. I've already played around with it. The hearing aid plays a little tune when I change settings on it. I have no clue how to change the settings on the hearing aid yet, as Phonak was completely out of the Naida booklets, so I don't have a copy of it yet. But I could always go online and print it off, and I should be getting a copy of the booklet someday soon.

One thing I am noticing, I'm not hearing the electrical sounds here at work (the computer fans and such). I almost always heard it with the Supero, even though audie had played with the different bass levels. And the scanner on the desk next to me, it's not as loud and bothersome right now as it was when I hear it with the Supero hearing aid on. Interesting, very interesting!

No captions?

2008-05-05T13:11:00.002-06:00

Last Thursday night, I sat down to watch Smallville and Supernatural. Normally, both of these shows are captioned, as always. But last week, there were no captionings at all whatsoever. And it's the same with other shows on the CW network. At first, I thought it was all of CW in general. But after making a post on alldeaf.com and finding out that the shows have captions in other cities, oh great so it's a local thing! I was highly disappointed last week to see no captions for my favorite programs.
Anyway, last night, I did some quick google search, and discovered that WyoMedia owns the local CW network. So I typed up a letter to send to them, complaining about the lack of captions on their station. There have always been captions on the CW/WB channel before, so I don't know why all of a sudden there wasn't any last week. Hopefully I'll get a response of some sort, and that WyoMedia resolves the captioning issue for the CW network. If it continues that there are no captions on the CW channel, I will not be happy. There are some programs that I enjoy on that channel, especially Supernatural. I want to be able to watch my programs, and understand what is going on with the captions!

Drats.

2008-04-25T12:51:00.002-06:00

No Naida today. I did go to the audiologist's office and all. The hearing aid and remote was on the audie's desk, the hearing aid already hooked up to the computer. Audie did some messing around, but everything sounded too quiet. He called Phonak for help, and did some more messing around. Still too quiet. Even the audie put the hearing aid up to his ears, and he heard a bunch of buzzing. Phonak says they will send out a new replacement today, so hopefully on Monday I'll have it. Audie has even ordered the Naida FM boot, and says he won't charge me for the boot. He had my T-mic FM transmitter back, looks like it's been replaced. I didn't order the FM boot, but he did anyway, he thought I might get some use out of it. We'll see, though.

Also mentioned the bone conduction experience, and he found that really interesting. I've had meningitis, and with the bone conduction hearing aid, the sounds still goes through the cochlea. It's been presumed that my left cochlea is ossified due to the meningitis, and traditional hearing aids have never worked. He says we can play around with the bone conduction thing some day, see if it's something I should consider or not.

Whooaaa...

2008-04-22T14:01:00.002-06:00

We were just wandering the mall in Wilmington, NC, when this gentleman
came up next to me and my mom, wanting to see my hearing aid. We got to
talking a litle bit. He's been deaf all his life, and has tried just
about everything minus cochlear implants. He has a bone conductor sort
of hearing aid. He even took his off and placed it on behind my ears,
and holy crap! For the first time ever, I heard a little bit on the left
side ever since becoming deaf. Wow. My mom was talking, I was watching
her talk. I didn't hear all the words she said, but I actually heard a
little bit. It was pretty amazing. The 3 of us chatted a bit more, and
even exchanged addresses.

Hmm, I'll have to mention this to my audiologist on Friday, see what he
says hearing aids have never worked for the left ear for as long as I
cam remember, so I'm surprised I could hear something with the bone
conductor device. Hm, maybe there is hope yet.

He was a very interesting person, a sweet gentleman. I didn't think he
would even suggest that I try his bone conductor. It was all his idea,
and he took it right off and went behind me, placing it on me. It was a
neat experience, for sure. Felt a lot of vibrations from the noise all
around, and heard my mom a bit. Even mom was excited.
--Meghan via the sidekick 3

Sweet dreams beautiful baby.
Sweet dreams Aiden Ryder Betts.

Some vacation

2008-04-21T13:11:00.003-06:00

Some vacation this has been. Last Tuesday, my mom, step dad and I flew out of Denver into Raleigh, NC. Then we rented a car and made it to our beach cottage in Surf City. Wednesday, we find out my sister has been checked into the hospital, as she was in labor. All day we were anxious, waiting for the baby to be born. They ended up having to do an emergency c-section (the whole day of labor was very normal and going very smoothly, the baby had a very strong and steady heart rate up until the last few minutes). Baby got taken out, doctors fought to keep his heart going, but he didn't survive. Very bad night for all of us. We're still getting through this, moving on with life. (Sweet dreams Aiden Ryder Betts)

Pretty much the whole time we've been out here, I've been having difficulties hearing, making sense of what is being said. I have been lipreading but that doesn't always help. I know part of my not being able to hear for a while was due to the shock of what happened with my sister's baby. Perhaps the humidity in the air also has had some affect? I have no idea. In Wyoming, the air is very very dry, but out here it's humid. Have been using the dry-aid canister (the drying crystals) every night. Definitely very difficult to hear speech when out at the beach, since I hear more of the waves and the wind than anything else. But when indoors, sometimes it's other sounds I hear. I can hear some speech sounds, but not all, and it's just been insane for me to try to keep up with conversations going on.

But this Friday, I should have the new Naida hearing aid. I am anxiously looking forward to getting the new hearing aid, and trying it out.

Sorry what'd you say?

2008-04-16T13:26:00.000-06:00

Geesh I wish my mom didn't get grumpy with me if I didn't hear what she
said. We're on vacation in North Carolina, its humid here and the
humidty does get to my hearing aid. And when in stores and restaurants,
I do turn to the noise adapt setting on the hearing aid so the
background noise is much more quiet, but then the stuff I do want to
hear is also more quiet and more difficult to hear and understand.

20 years I've been deaf, and here's mom getting frustrated with my not
being able to hear. Give me a break, I can't help it, but there's no
need to give up after the first 'what?' and say "nevermind!" with that
irritable look and tone. If she really wanted for me to understand what
she's saying, she could make more of an effort to look directly at me,
or get my attention instead of trying to tell me when I'm not looking.
You'd think shed know better, after having to deal with this for 20
years, but apparently she doesn't today. Oy!
--Meghan via Sidekick 3

More Naida ramblings

2008-04-08T15:04:00.002-06:00

Called the audiologist's office again, and "spoke" with the assistant (I used the i711 internet relay to make the call, as usual), as I had some questions I completely forgot to ask on Friday.

I will have to pay for the hearing aid and remote on the 25th, before I leave the office, and try out the Naida for 45 days. If I don't like it, I can always return it and get the money back. And, the mypilot remote is only $250, which is a lot less than the $400 estimate. Wow. So I'll need a total of $2,145.

Have another relative that wants to help pay for the hearing aid too. She had some money set aside in a savings, and decided she wanted to put that money to good use. Wow, several family members are going to be owning a piece of my ear! I wonder which part I'll own.. hm! My family really does so much for me, it's great. I really wasn't expecting all this help with paying for the hearing aid.

Speaking of Naida prices... I saw a post from a parent on the AllDeaf.com forums. He's down in Texas, and has a deaf daughter that is getting her first hearing aid. An audiologist recommended the Unitron Element 8 or the Phonak Naida, with the Element costing $1,850 and the Nadia costing $3,000 for just ONE. Whaaaaaat?! $3000 for ONE Naida hearing aid? Wow. Now, if the audiologist was also throwing in the remote and FM system and whatnot, then that price is more reasonable. But for just 1 hearing aid alone? Wow. I was shocked to see the price difference.

Ramblings

2008-04-06T16:22:00.002-06:00

$1,895 for the Naida V hearing aid, really? Wow. My mom and I both were expecting it to cost more, so I was shocked when the audie assistant said it was $1,895. And the remote would be about $400ish. My parents will help me pay for the rest of the hearing aid (already have $1000), so we'd need about $1300 more.

Anyway, have made the appointment for April 25th at 11 a.m. for the new hearing aid. I think my audiologist will be ordering it. He could have ordered it on Monday (tomorrow), and I could have had the Naida by Thursday or Friday. But since we are leaving for North Carolina next Monday, I thought it'd be wise to wait until we got back from NC to get the hearing aid. Just from past experiences, I know I will be visiting the audie quite a bit at first to make adjustments to the hearing aid. A new digital hearing aid won't be completely perfectly programmed right on the first shot, I know this very well.

I'll probably call sometime this week, double-check to be sure the audie will be ordering the Zebra-style hearing aid for the appointment.