Transitioning from HA to CI... how do you know when you're ready to make the jump?

[Watermelon]

Thank you all for your comments, and feedback. I appreciate the insights you have all provided.

For deafdude1 who requested it (and others who are curious), my audiogram:
Left Ear (the better ear):

Right Ear (the worse ear):

This is slightly different from what I said earlier, I thought it terminated at 750, but it seems to be 1500. I guess my memory's starting to go at the ripe old age of 29.

 

[deafdude1]

Wow your audiogram in the right ear is identical to mine!

Here's mine from last year. My lows have stayed the same since birth but what little highs I had are gone. There's still so much I need to learn about hearing loss, cochlear dead zones, hearing aid gain and especially cochlear implants.

Ive read dozens of CI blogs and most say their subjective CI experience is positive. But many are missing objective information such as audiograms, what HAs they wore, did they try the best HA, were they forced into CI, what reasons did they have for CI, etc.

PM me your instant messenger handle so we can share our collective knowlege and I can point you to some good sources. Also don't forget to check my blog, link is in sig. I post what I learn and right now im reading on cochlear dead zones, will post that soon in my blog.

http://www.alldeaf.com/hearing-aids...hats-highest-frequency-you-properly-hear.html

Piano thud test for cochlear dead regions. I hear loud and clear in the 900Hz range and faintly in the 1100Hz range and nothing above 1200Hz or so.

 

[Watermelon]

You are right, they are pretty similar. Mine's slightly worse, and my left ear seems to be like yours used to be. I'll have to figure out how to PM you my IM handle. I think I saw something somewhere that I had to get 50 posts before I could PM. Not sure on that. I guess I better get posting!

 

[deafdude1]

You could post a comment on my blog and include your IM handle in the comment.

 

[Ridemiown]

I was implanted on July 20th and have yet to be activated. However they were able to completely save my residual hearing so losing the residual hearing isn't a guarantee any more.

I did talk to my surgeon about the stem cell research. The implant center has grant money lined up for stem cell research but they are still waiting on FDA approval of the research and have been waiting for 2 years. He indicated to me that one area of concern is that the hair cells are responsible for not only transmitting sound but for balance. At this time, they have no way to distinguish which hair cells are used for what so the stem cells may regenerate those balance cells but not hearing cells. I am sure this layman's description will appall hearing professionals but offer his input for those interested.

As for making the decision to go from HA to CI - my choice boiled down to this - do I want to continue for the rest of my working life just hoping to "get by" with my hearing aids or actually be able to hear better when it's most important? Will it really matter how well I hear when I'm 70? Probably not as much as it will matter at 50... That was my deciding point..

 

[Watermelon]

You could post a comment on my blog and include your IM handle in the comment.

Done, though it seems like my handle on the blog is my IM handle, I goofed on the OpenID-AIM process :scratch: ... so please delete it when you get it

 

[deafskeptic]

Funny you asked since im experiencing possible recruitment. However that goes away when the SPL/MPO on my HAs are programmed down. The recruitment seems to take place above 500Hz and it feels like there's pressure/tickling on my eardrum like a qtip pushed in too far.

My CI audiologist didn't think any hearing aid on the market would have helped me so I went for the CI.

 

[deafdyke]

Oh and Watermelon.....if you can understand most hearing people with HAs, but you're having trouble with people with accents.....that's really not a good reason to get CI. Even hearing people have difficulty with accents a lot.

 

[Watermelon]

Oh and Watermelon.....if you can understand most hearing people with HAs, but you're having trouble with people with accents.....that's really not a good reason to get CI. Even hearing people have difficulty with accents a lot.

It's not. I wouldn't get a CI for that. That's what VRS is for.

 

[deafdude1]

I was implanted on July 20th and have yet to be activated. However they were able to completely save my residual hearing so losing the residual hearing isn't a guarantee any more.

From the CI blogs ive read, almost everyone loses some, most or all their residual hearing. Those that keep some or all their residual hearing usually end up losing it months or years later. But the point is, those looking to get a CI are willing to give up their residual hearing as they say it's not enough to be useful with HAs. Many don't even care as they never want to go back to HAs as long as CI is better.

I did talk to my surgeon about the stem cell research. The implant center has grant money lined up for stem cell research but they are still waiting on FDA approval of the research and have been waiting for 2 years. He indicated to me that one area of concern is that the hair cells are responsible for not only transmitting sound but for balance. At this time, they have no way to distinguish which hair cells are used for what so the stem cells may regenerate those balance cells but not hearing cells. I am sure this layman's description will appall hearing professionals but offer his input for those interested.

Perhaps those hair cells are used for both! The ancedotals ive seen who got stem cells for deafness were success cases. I have one example in my blog. He was profoundly deaf and is now probably moderately HOH. My friend believes he achieved a 40db improvement in hearing.

As for making the decision to go from HA to CI - my choice boiled down to this - do I want to continue for the rest of my working life just hoping to "get by" with my hearing aids or actually be able to hear better when it's most important? Will it really matter how well I hear when I'm 70? Probably not as much as it will matter at 50... That was my deciding point..

I agree, for your lifestyle a CI made sense and you took the risk hoping it will be better than HAs. You could still benefit from stem cells at 70 in your nonimplanted ear and hopefully even in your implanted ear at 80 when the technology matures more and finds a way to work in "nonvirgin" ears that were altered with a CI.

My lifestyle is different that I don't struggle as much. Im great at reading lips for the times I socialize. I have no difficulty understanding my parents with or without my HAs. So for me, the biggest thing I want is to have some ability to hear environmental sounds without HAs instead of living in a silent world. Id of course hear much better with HAs with more residual hearing.

Watermelon, when will you be online?

 

[Watermelon]

Watermelon, when will you be online?

I'm online now, but about to run off for a bit. I'll be back on in an hour and half (12EDT/11CDT).

 

[deafbln]

Am I Candidate for CI?

It is very hard to understand speech, here my hearing test...it seeems so that I have to make the step to CIs. I want them in both ears in one surgery.



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[set2]

The only way to find out if you are a candidate is to go for an evaluation. The evaluation will test your hearing and speech discrimination with and without hearing aids.
Good Luck!

 

[deafdude1]

And for those who stayed with HA's but considered CI's:
What made you decide to stay with HA's instead of CI?

Or should I just hold out for stem cells therapy (10+ years?)?

I wanted to update you(I previously replied 4 months ago) stem cells is available now, Chloe got it and can hear without HAs! I had known about stem cells since mid 2008 and this was a big reason I stayed with HAs. I knew very little about CI till late 2008 when the audiologist who fitted me with new HAs mentioned CI. This surprised me because ive always thought CI was for those who had no residual hearing and could hear zip even with HAs. I researched CI but wasn't comfortable with the risks and giving up my residual hearing. I also learned that stem cells was successfully treating deafness in animals.

I have been in contact with a few stem cell centers, including the one that treated Chloe. They are treating others now and most of them are experiencing an improvement in hearing, for some, it's significent. I am getting treated at one of those centers and will accept whatever improvement I get. Average improvement is 20db per treatment and I can come back for repeat treatments. Hope to chat to you online again someday, been a while!

It is very hard to understand speech, here my hearing test...it seems so that I have to make the step to CIs. I want them in both ears in one surgery.

I notice you are late deafened and you wanted CI back in 2005, howcome you never got CI then? Your hearing is way worse than mine, youd have qualified for CI even back then. Were you waiting for stem cells or something else? If stem cells interests you, there's plenty of posts on this on alldeaf and in my blog. If you are against stem cells, that's your choice and I wish you luck with CI. If you choose the CI route, they will implant your worse ear, never both ears together because if CI doesn't work, you can't go back to HAs or get stem cells. Each ear is a seperate surgery so both ears is two surgeries. Stem cells is no surgery, just an IV in arm, this among many other reasons is why im choosing stem cells over CI. Again, good luck with whatever choice you make!