At my 9th year annual check up at my CI centre back in October, I was basically asked if I wanted an CI for my right ear, so I would be a bilateral CI user. I said I was not so sure, so I went on the assessment list and then if I changed my mind I could email them and say no.
My first audiology appointment for my non-implanted ear is on Monday. I am wondering what it will entail since it has been a long time since I first got assessed for my implanted ear all those years ago back when I was 10 years old. It should be interesting to see how well/ how much I can hear with my hearing aid.
On Jan 13th I also have another appointment but with the co-ordinator of the adolescent programme to discuss bilaterals in much more detail.
There is a lot to consider about for my right ear, since my hearing in my right ear would be destroyed, if I didn't get much benefit from my right ear like the audi said I wouldnt get much benefit from, I would not be able to return to a hearing aid, there is always a chance it won't work etc.
My mum is for it, my sister is against it due to it might not be working. *sighs* I agree with both my mum and sister but the assessment on monday should help me consider if I do want to proceed or not.
Can you tell me what the first part of the assessment would be, what tests they may do on Monday? It would be good to receive feedback so I know what tests to expect.
8 comments:
One of the questions you ask might be about stem cells. It's been in the news lately about one young woman receiving great improvement in hearing, and more may be done in the next few years in the USA.
Especially important is whether getting CI's may make you ineligible for stem cell therapy when it is approved.
Melissa,
When I first asked for an implant for my other year six years ago, I received a lot of criticisms from professionals and my parents because I was told that I should save my ear for hair cell regeneration or leave my ear as a back up ear in case if something happens to my first implanted ear. Plus, I was told that I was not going to gain any benefits because that ear was completely deaf for 17 years. After a lot of research, I learned that I can still receive benefits even if I might not hear as well as my first implanted ear. I also learned that the hair cell regeneration is years and years away because there are currently issues such as tumors growing along with hair cells growing. I was also told that the longer I leave my unimplanted ear unstimulated, the higher chance that I would have of losing the nerves in the ear. I have to say that getting a second implant was one of my best decisions because I hear a lot better with two implants. For instance, my hearing in background noise improved tremendously. I'm able to have conversations with a large group of people in a noisy restaurant with a great confidence. In fact, one day, I didn't have my second implant on as the battery died, and I noticed how much I was struggling to have a conversation with my friends in the cafeteria. My distance hearing also improved. By that means, I can have conversations with people several feet away from me without any use of lipreading. For example, I could be upstairs in my room and my mom could be downstairs, and we can have a conversation easily. Also, the sounds sound fuller and richer with two implants. I also have a few friends who were hearing aids like you and received bilateral implants and said that there is a remarkable difference in their hearing. If you'd like for me to get in touch with them, I'll be happy to give you their contact info.
Lissa, the letter would have not been on your doorstep if they have doubts it would work for you. Go for it girl and good luck.
That's true Charlotte!! And yes, Rachel that would be good. Thanks for telling me your experience. It does help!
hello Melissa!
We had the following questions in deciding whether our then 2.5YO Li-Li should get a second implant last year or wait:
1. Surgery: would better, less invasive, Lasik-like methods be developed in the near future, eg, work currently being done on developing new methods at Vanderbilt? > CI Surgeon's answer: yes, but still requiring anesthesia and deep surgery, not significantly different from current methods.
2. technology: would the big CI players be coming out with any new technology that we'd want to wait for > Cochlear Americas: working on something, but ETA and scope of changes unknown, possibly just external upgrade (hmmm, yes, but now I get to see the wonderful SMALLER Nucleus 5 that we missed by a year - push them for an update!); CI surgeon said that CI co's will always be focused on retrofitting new tech to previous models: recipients are their proof points and if we fail, they fail.
3. hair cell regen: would getting surgery now preclude or limit later hair cell regen therapies? > CI Surgeon & hair cell regen researcher answered: no!
4. hair cell regen: when will hair cell regen. be available and what are expected results? > last year, CI Surgeon & hair cell regen researcher answered: very hard to say, some ballpark figures that they wouldn't want to be held to: They expected nothing available for children in the US for at least another 5 years (that was in Summer '08). Results during first 5-10 years after that point (from 2013 - 2023), they expected we'd approximate results from early to current CIs, improving over time, but wouldn't see catch up to contemporary CIs until the 10-15 year point.
5. Is the incremental improvement expected worth the downsides (surgery, potential to damage hair cells that might be accessed later) > What is likelihood that Li-Li will be in crowded, nosy, chaotic environments? HIGH
We weighed the benefits of waiting (better surgical methods within a couple of years, potential for hair cell regen. in 15 yrs) against the benefits of better access to sound in loud, chaotic environments (school, restaurants, playgrounds, cars, concerts!) during the next 10-15 years of Li-Li's life.
We opted for better hearing now without feeling that we'd sacrificed the potential for new tech or new therapies later. And we are lucky, according to her tests (little if any change from pre-implant), there's been little damage to the surrounding area or reduction in hair cells, so that fear of closing potential windows for future treatment appears to have been unnecessary.
We were told the improvement would be incremental, small. And that's true when tested in a quiet booth - maybe a 10 db max improvement over 1 implant, nothing like the 70db improvement gained by the first implant. But we've been thrilled by how much better Li-Li now hears outside the booth, in the real world where we can't control the environment. I can't really quantify what's attributable to the 2nd implant vs. just the passage of time learning to hear and growing up, but she seems more comfortable with two than she did with one, she requests both actively, she replaces the coil when it falls. Perhaps it's a better balanced input of sound now.
Best of luck with your decision -- without the urgency we had (giving as much sound access as possible during that critical language-learning window), it would be tougher, as we'd be weighing the possibility of getting that future tech a bit more.
Li-Li's Mom
Thank you all for your comments! They were very helpful!
Hi Dianrez, Melissa isn't interested in stem cells and I respect her choice. I am getting stem cells myself soon, however.
Rachel, adult and cord blood stem cells do not cause tumors anywhere. Those stem cells have been used in over 10,000 patients worldwide with 0 tumors. Even Chloe got stem cells! Do stay away from embryonic stem cells, however!
Elizabeth,
1. I have been in contact with a few stem cell centers, including the one that treated Chloe. No surgery or lasers. Just an IV to arm. They can make a small incision and implant the cells directly in your cochlea but don't recommend this 2nd option.
2. Any future CI technology does not interest me as I am getting stem cells soon. We have seen Chloe become hearing without HAs!
3. The stem cell centers ive been in contact can't and won't consider anyone with CI a candidate for stem cells. Ive also learned that those with a CI may require regrowing a new cochlea(a 20+ year wait) Animal studies have shown that damage to the cochlea similar to what CI does causes stem cells to be unable to give any real improvement.
4. The USA is years behind due to Bush and his anti-stem cell crowd. Other countries are offering stem cells today and dozens of people are getting it for hearing loss. I would only need to get to about 80db HL after stem cells to match today's CI. I should be able to hear at the 10-20db level with my HAs offering maximum amplification of about/around 70db in the speech frequencies.(80db HL with 70db gain=10db aided with HAs) Todays stem cells offer an average improvement of 20db per treatment and Nepsis can give me a treatment once a month. We have seen Chloe's amazing results. I have seen other results that were still as good or better than today's CI.
5. The downside to CI is why I am choosing stem cells over CI. If stem cells don't work, the only thing I have to lose is several thousand dollars.
Melissa is still choosing CI because she doesn't want to be hearing or be able to hear anything unaided. She's against stem cells but respects my choice for stem cells. Likewise, I respect her choice for CI.
Hey there Lissa,
Sorry, I could've sworn I commented on this post. I guess not? So, I'm going to comment now..
I LOVE being bilateral. I have no regrets, and hearing in noise is so much easier. It's really nice not having to worry about how you're going to position yourself so people are speaking into your good ear, you can just sit wherever you want! Music sounds so much better to me, and although your second ear will probably not hear as well as your first one, it will always feel like something is missing if you don't have one on-and it should! People with typical hearing have two ears, so should we!
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