The Bionic Sound Project

this girl’s journey to sound

Hearing Aid Woes, and CI stuff Monday, March 13, 2006

To make a long story short, my hearing aids are messed up.

Remember this entry where I talked about battery problems? Well I found out why today. I’ve had my hearing aids for about 8+ years, and the normal lifespan of hearing aids is around 3 years. They were awesome ones…the Widex P38s.

So, my options are that I need to either:

1. get them fixed (at a cost of $130 per hearing aid, with no guarantee they can be fixed)
2. get brand new ones (at a cost of $1,100 per hearing aid)
3. get one brand new hearing aid, get one fixed, and then get the cochlear implant.

The Hearing Aids/Cochlear Implants I’m Looking At (For My Degree Of Hearing Loss)
My only demand is that they *must* be compatible with my iPOD. Can’t live without it. And if I get a CI, I need to be able to plug both the CI and the hearing aid into my iPOD…I wonder how that’s going to work.:-/

Digital Hearing Aids

Oticon Sumo DM
Oticon Syncro 2 Power
Siemens Triano SP

Cochlear Implants

Nucleus Freedom
Advanced Bionics Auria
And a new cochlear implant is coming out this summer from Advanced Bionics that has 120(?) channels, as compared to the current implants that are 22-24 channels.

My first choice from when I went through the evaluation last spring was the Auria, and then the Freedom. I was already declared a “very good candidate” on March 24, 2005. I am scared to death, but at the same time, this might be something that I should do, especially since I have till the age of 26 to get nearly full coverage on the implant from my insurance company as long as I am a full-time student. The new genetic technology/hair-cell growth that they’ve got in the guinea pigs and chickens is still anywhere between 10 to 20 years off. And I realized that by then I will be 33 or 43…why wait that long? Especially since I have so many years ahead of me right now, in this moment.

Advanced Bionics is said to be better with music. And the new 120 channel one sounds really promising. But if you really want to listen to music, digital hearing aids are the way to go. I’m afraid to lose my ability to listen, recognize, and differentiate the sounds in music. I still want to be able to play the piano and the drums and be able to appreciate the full range of tones and sounds.

I spent nearly 4 hours at the Hearing Aid Shop today…first getting new earmolds…waiting 30 minutes for my appointment, then nearly 2 and half hours in the audiology booth doing testing and trying to reprogram my hearing aids, without much luck. Then he called my mom and talked to her about what was going on.

The normal battery drain is 1.5mA…mine was at like 3.6 and 2.7…which was really bad. And for the test, it was doing these things he had never seen, with sharp spikes and drops at each frequency point till it leveled out to what it’s normally supposed to do. And all those batteries that I kept replacing? They’re all good…practically brand new. We tested them in the charger.

I can barely hear in one ear, and the other one is okay…I finally switched them around, since I’m more left-ear-dominant (even though my hearing loss is greater in that ear), so now I can hear, but it sucks. I have to wait between 10 to 14 days to get my new earmolds. then I have to get a new audiogram, then test out the digital ones for awhile and see which one I like. After that, I can get started on the CI stuff. Oy vey.

Hopefully I can have the CI surgery this summer (with the Auria or with the 120-channel)…either at St. Joe’s, or Mayo Clinic.

In addition to all that, there’s screwup over the serial # of one of my hearing aids…apparently it’s listed as being on the shelf at Widex, and the one they have listed as me wearing now, I don’t even have on. And the first number (off of my records) belongs to another person. I need to call and trace back all my audiology records.

 

24 Responses to “Hearing Aid Woes, and CI stuff”

  1. Allison Says:

    Mike,

    yikes that doesn’t sound good.

    i’ve had oticon before…and they worked pretty well. i’m already kind of leaning towards the Syncro 2 Power…but it all depends on what works the best for me.

    are you ITE or BTE?

  2. Allison Says:

    Katie, but the question is…and i know you had the old nucleus implant, did you have to stay with the same company?

    or were you able to look at the different companies and decide?

    I’m so glad you’ve been able to recognize who’s playing and such. I remember when I did that with my digital hearing aids…I was so excited. ^.^

    That would be interesting. i wonder if that package is the same as the stuff that they have here. Hmm. It couldn’t hurt. Thanks girl!

  3. Allison Says:

    Makropulos, I know…it’s something that I’ve been considering off and on since 1997.

    I applied for the FDA trial, but I missed the cutoff by 1%.

    My word comprehension is 40% and I was born deaf, so that makes a difference if you’re prelingually deaf.

    I could watch the CI technology develop, but it really boils down to a money issue. I’d rather have nearly full coverage (like 95%) and take advantage of that now, instead of gambling with the chance that I may not have health insurance that is as awesome as the one that I have right now. So it’s something that I really need to think about.

    Sometimes I wish I had gotten implanted earlier, so I wouldn’t have to make this decision. Oh well. It’s always positive and negative for people…I’ve had my hearing aids since I was 4 months old, and I have worn them every day (except for when they were in need of repair), so going a day without sound is incomprehensible!

    Mike said above that he had the Triano ones, and that they died after a year due to sweat.

  4. Allison Says:

    Kathleen, my hearing aids are digital. that’s why i’ve been able to listen to my ipod.

    i absolutely loved being digital.

    so why are you not going to touch the CI?

  5. Allison Says:

    Amanda, that’s what he also said. who’s your audiologist here?

    I know it’s only 800 bucks, but I’m not sure if it will be powerful enough for me, but we will see.

    I’ve heard horror stories about it, but the percentage of that happening is small. And sometimes people blow things out of proportion, so I don’t know.

    But that’s awesome that you can hear all those sounds. It reminds me of when I first got my digital hearing aids (the Widex P38s).

    If the sounds bother you, is it possible to get them reprogrammed?

    By the way, I haven’t talked to you in FOREVER. Missing you…wanted to ask you how the co-op was going? I saw Tim yesterday while I was at the hearing aid shop. ^.^

  6. Allison Says:

    Amanda, oh my. that certainly is something.

    i’m not sure what your hearing loss is, or if you have a lesser hearing loss than i do.

    i know they all say that, but they do have criteria. i.e.: the first time i applied for the CI, I missed the cutoff by 1%.

    and I know the horror stories too, I’ve heard them as well. but you have to realize they’re just a small part of the population. besides people like to blow things out of proportion as well.

  7. Allison Says:

    Sonja, that’s another very good point…all the support services that are available here at school…plus the community is here.

    i’m surprised you didn’t like the digital hearing aids. did you test them out (different ones) before you bought them?

    i’ve had my digital ones since high school.

    good to hear from you. did you get rain up in toronto?

  8. Allison Says:

    Kathleen, they were…try between 2,500 to 3,500 for them.

    now i’m confused, you’re not going to get digital? or you are?

  9. Allison Says:

    Kat, i think it depends on what kind you have, definitely. mine are BTE, and they are more powerful than the regular ones.

    that’s the other thing i’m starting to realize…the hair cell thing won’t happen.

    it’s also genetic manipulation as well. and that sounds a bit freaky.

  10. Allison Says:

    i know we had this convo, and i really appreciate your feedback.

    i don’t know, i think it all depends on your background and hearing loss and the commitment you have to therapy and wearing your CI as to how well you will do with the new CI.

    haha, i find it funny that you’re Little Ali now…and I’m Big Ali.🙂

    kiss kiss mwah xoxo

  11. Makropulos Says:

    This is big decision time, since getting a CI is a major step (if you choose to take it). I know people who are really happy with them, and others who don’t adapt so well, but it does sound like you’re an ideal “candidate”. Alternatively, you could get new hearing aids, watch the CI technology developing over the next few years, and go for it then. I’m glad I’m not the one having to make that decision.🙂

    Both the Oticon hearing aids you mention are supposed to be good – and the Sumo really is a genuinely very powerful aid (unlike some of the others around). I use Siemens SP aids and I have to say that I’m pretty happy with them.

    Good luck with all this!🙂

  12. Matt Says:

    Mayo Clinic, yum (sorry, I love that place)

  13. Mike Says:

    I had the Siemens (love the name!) Triano. It lasted a little over a year (just long enough to lose the warranty) before sweat killed it… Which was kind of ok, I never liked it anyway and I’m back on my 9 year old HA.. which yes, is in need of replacement…

  14. Katie Says:

    I have Nucleus Freedom and I love it. I was able to hear better with it than I do with my old implant. I’m still getting adjust to listen and recognize the sounds, especially with music. As of lately, I’ve able to recognized who’s playing and such.

    If you would like, the next time I come up to school, I will bring the package I got from my audiologist that have CI stuffs in it and show it to you so you can get the idea.
    🙂

  15. Kathleen Says:

    Wow choices choices..

    It was really tough for me to go digital – such a hard decision for me to make. I’m not even touching the CI – I’m not going to go there..

  16. Amanda Says:

    I have the Sumo hearing aids and they are super powerful. My audiologist at RIT told me it’s basically as equivalent to CI. How powerful it can be is like a jet engine blasting through the hearing aids. Strong stuff. It’s only 800 bucks for two at RIT. that’s cheap! Got the $300 off for being first time buyer at RIT. Sweet. Anyways, since your hearing aids are so old, you WILL notice a huge difference in the new ones.

    I’ve considered for a CI since my audiologist told me I’m a perfect candidate. They all do say that. I’m quite skeptical of it since I’ve heard far too many horror stories from my friends about it. For instance, just very recently a friend of mine had a lot of swelling in the area where her CI is, so badly that they have to take it out. I could go on and on but I don’t want to scare you. So I’m very pleased with my Sumo hearing aids. I’ve been hearing a lot more sounds that I’ve never heard off like clothes rustling, the keyboards, little things that new CI patients hear. Even I hear the birds chirping! I’ve never heard of that before I had the Sumo hearing aids. It’s so sensitive that I always have my hearing aids at its lowest volume. powerful stuff. One thing I hate the most is the sound of door slamming, ohh the piercing sound! *cringes*

  17. Sonja Says:

    If you get your CI this summer, then you’d take advantage of programs in school or at Strong Hospital (I think) for people with CI. For ex. audiologists, speech therapists. You know what I mean? It’s like you don’t have to drive to another town while you’re in school this fall.

    Plus, you’re very committed to having CI with a purpose. So that’s a good thing. Smile.

    I did ask about digital versus analog (sp? – old version) two years ago. I don’t like my digital hearing aids. It sounds too machine-like. I don’t wear it often anymore. It doesn’t really work on me.

    Enjoy your day.🙂

  18. Kat Says:

    hmmmmm my hearing aids have a lifespan of 10 years. i guess it differs depending on what kind of aids you have and what kind of loss you have.

    my hearing doctor said that the hair cell thingy will most likely never happen in our life time😦

  19. Ali Says:

    mmm u know my story, Allison. It depended on which company that would support/accept my insurance..so I ended up getting CLARION BTE. Of course, I had the old one, the box n wire-type for about 4 to 5 years, then now I have the BTE for almost another 5 years now. I’ve had it for a total of 9 years..I absolutely love it. You know I can talk on the phone, hear whistles which I couldn’t with my old hearing aids back then as a young’in. I speak well enough to be understood, I’m sure you know. Honestly, its everyone’s decision, I know BUT from my observations, I’ve noticed Clarion-users have succeeded and improved at a much higher and faster rate than the other Nucelus 21/and other types. *shrugs* Just something I’ve noticed from my friends who are other users.

    Bottom line, follow your heart Allison. You’ll do just fine whichever you choose, as long as you stick with it and commit that u’ll work for the best.

    Much ♥
    Little Ali

  20. Kathleen Says:

    whoa digital since high school! Phew, they must’ve been real quite expensive back then.. hehe..

    Wow I must be quite stubborn to not get digital until just now in Sept.

  21. Katie Says:

    I can change to different company if I want to but I chose to stay with the same company because I’m more familiar with it.

    My audiologist at Johns Hopkins said that with Nuclues Freedom, it’s more easier to update the program than it is with Advance Bionic.

    It’s awesome to be able to recognize who’s playing and as of last night, I recognized a few words of Steve Miller Band’s The Joker. I was so excited and sang some of it to Josh who’s so amused by the whole thing.

    What kind of stuffs does Rochester have? My package contain some of accessories (ear hook, microphone, coil, batteries, personal audio cable and such), handbook manual and dvd, and back-up speech processor.

  22. Kyle Says:

    Amanda, would hearing aids that loud risk decreasing your hearing even more? Or is it a moot point?

  23. Sonja Says:

    That’s a good question about hearing aids.

    I was asking myself that question until I realized about hearing molds. That place where I got my hearing aids…I had to go back a few times to get my molds fixed. I came to realize that this place did not make it well.

    I was going to go to another place where I used to go when I was young. They make good molds for my hearing aids. But ever since, I forgot about it.

    Before I had my hearing aids, I didn’t wear it for 1.5 years. Both of my hearing aids..well one…it was stuck in the washer. Eventually both went “Dead” and I didn’t want to buy new ones at school. So I chose to wait until after my graduation to get one here. Here in Ontario, you’d get it for free if you’re a full-time student.

    Anyway, so the habit of not wearing hearing aids led me to procrastinate with getting new molds.

  24. Kathleen Says:

    I’m just terrified of change in regard to sound and the ability to hear.

    I don’t know how I was able to lipread and persevere so much without hearing aids for many years – how the heck was I able to do it! I must be one stubborn cookie. I’m just terrified of operations and I just honestly don’t think it would be good for me – I just have this underlying feeling that I would be running away from the challenges of lipreading and just hear like a hearing person. You know how I tend to always choose the hardest things in life, how I love challenges and doing them and trying to do the “impossible” and being successful or progressing closer to sucess. It is fundamental to my core identity as a person, and running away from a challenge (which is what it would feel to me getting a CI for myself) seems like it would be a gradual unstoppable self-destruction.

    I already alienate Deaf people by my ability to relate to hearing people, talking and lipreading skills etc. I feel that my life has changed 180 degrees already and I’m the furthest from the Deaf world and society/lifestyle as I have ever been in my life since I left RIT. I’m afraid that with a CI, I will piss off so many more people than I want to – yes, I know I can’t be best pals with everybody I see – yet, I grew up Deaf, I went to a freaking Deaf school and used to be scared of hearing people, prefer to sign all the time and hearing aids off – and want to get a job with a Deaf organization..

    All that has changed now – I’m the opposite now, (of course if I see a Deafie, I prefer to sign ASL voice off) and prefer to hang out with hearing people, talk, and just want to have a job in the most intense hearing-only environment that I can think of – being a rabbi.. Geez.. Anyway – getting a CI is just a big cultural gamble for me. I already suck at the cultural part of being Deaf – I fight and wrestle with being labeled Deaf and not HoH. I’m not freaking HoH I can’t use the freaking phone. I don’t want to worsen my cultural relations right now.

    People that I know who have CIs tend to grow up in the hearing world and immerse themselves in the hearing world like you have! : ) The hearing world is relatively new to me – the last 5 years or so. I didn’t “grow up” in the hearing world. I always had people interpreting for me or had sign language around me always – so I’m different than that. I’m constantly aware of how I’m doing different now. How I’m going against the grain of how I was raised. You know how it is the trend for people to choose things that are comfortable and familiar to them – well, I’m not. I’m choosing the drastically opposite of what I’m familiar with. I’m stepping in unexplored territory right now and I don’t want to make the terrain more alienating and foreign with a CI.

    I know it sounds like whining to you but I am NOT going to have speech therapy. I made a promise as a kid I wouldn’t go through that hell again, and I’m standing by it. I am practicing my voice by joining the choir rehersals. That is my “speech therapy.” I honestly don’t know what I would do if I end up with a kid who has a speech problem or is Deaf. I most likely will do what my mom did to me – speech therapy until age 16 or 18, then her/his choice. I do not like people telling me how to spend my time. I get amazingly red-faced pissed. To imagine getting a CI and to have doctors telling me to set up an appointment with so and so for so and so therapy and so and so this and that. Oh, you think I’m going to do that? No, haha. Yeah right. I don’t like that one bit.

    I don’t like the idea of an operation changing my hearing – I know you could use the same argument of implanting a pacemaker or some other sort of technology to improve your life and happiness, success etc – but I feel that I was born this way, and I was destined to be Deaf. I don’t like to play around with my destiny or fate – since so far, things have happened in very interesting ways in my life and unfolded perfectly. I don’t want to mess up the wonderful unfolding of my life just because I want to hear better? It just doesn’t feel right in my case.


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