Tuesday, May 5, 2009

Is Surgery Worth the Risk?

I received the following comment on my blog post, "Does Research=Hope for the Hard of Hearing?" and I thought Steve's question at the end (which I marked in bold) was worth posing in a separate blog post so perhaps more of you will post an answer. I would especially like to hear from anyone who has had cochlear implant surgery to know if losing all hearing is one of the risks of the procedure.

Personally I agree with Steve and I'm not ready for surgery (although I have envied the audiograms of people with cochlear implants that have better hearing than I do). I will cope with the hearing I do have for now although I do hope for a better hearing aid when it's time to buy a new one.

Here's Steve's comment:
I'm not really much bothered about a cure for my hearing loss. I've accepted my situation and I don't think my life would be any different today if I had full functioning hearing. I'd say, "eh?" a hell of a lot less but that'd be it. But for all the people suffering because of their hearing loss I'd love to see a science breakthrough that'd make things easier for them. Thing is though: there's a lot of people out there who can't afford to buy aids, would they be able to afford surgery? Probably not. So it'd only be helping the people that are currently being helped by hearing aids. Not that I'm knocking the science progress, of course. A question: would anyone here go through surgery to restore their hearing even if there was a chance that it could go the other way and leave you profoundly deaf?

Another point I'd like to address is that in the United States, insurance companies are often more likely to cover a surgery than a hearing aid. That may not be true elsewhere in the world.

What do you think?

Update: Dan commented that everyone should check out Sara's blog as she has just been implanted and discusses her surgery experience. I agree with Dan that what she's written is completely relevant to the discussion in the comments.


K.L. said...

The internal component of cochlear implants has been redesigned to minimize the loss of existing residual hearing in all three manufacturers. Unfortunately, there is no guarantee, but tests after surgery are confirming that most of the patients retain their previous residual hearing. However, it is still a risk.

Mog said...

I already am profoundly deaf. The tests for CIs have shown that I am an excellent candidate and very likely to hear more with a CI than I do with my brand new optimally tuned aids.

Thats the purpose of the CI testing. They also tell you the worst case scenario, and the risks.

So yes I am prepared to take that risk. As is everyone else who has had a CI.

It's not a huge risk. No more than the everyday risk we take when we get in a car, cross a road, etc, etc.

SpeakUp Librarian said...

Hi K.L.,
Welcome to my blog. Thank you for that information. I am not very knowledgeable about cochlear implants.

SpeakUp Librarian said...

Hi Mog,
Thanks for clarifying that part of the CI candidate process is testing and an explanation of the risks.
I see what you're saying about the risks of everyday life but I think when it comes to surgery people are more mindful of negative outcomes.

jelly said...

I too am deaf and am not a candidate for a CI.

Would I take the risk, if I could? Possibly, I mean if would restore any hearing I had at one time, why wouldn't I try it? I would probably do alot of research and ask tons of questions...I would be alittle scared at the surgery aspect and going under and all that.

There are no guarantees in life you know, sometimes you do have to take risks.

ms toast burner said...

Though I have troubles because of my hearing, I would not consider CIs. I don't think that my hearing loss is profound enough or affects me negatively enough.

If my hearing does get worse, yes I would consider it but right now, I'm OK... not thrilled but not sufficiently frustrated.

Plus I'm very squeamish.

Miss Kat's Parents said...


Too deaf for a CI? That's not possible. It is possible that you are not a candidate for other reasons, but being "too deaf" isn't one.

My daughter seems to have kept her hearing post-CI, but we were willing to risk it. Why? Because the hearing was no longer useful. What is the point of keeping residual hearing that you can't use?

K.L. said...

HI Miss Kat's Mom. I think you read that comment too quickly. She said she too (also) is deaf, not she is too deaf.

Speak Up Librarian, You have a great blog. Don't feel bad about not knowing a lot about the implant. There is a lot to learn, and a lot of misinformation as well.

It seems like kids get through the surgery with fewer side effects, so as an adult, there would be a lot more concerns to consider. In our area, there is an annual picnic for people with implants, and those considering them. It is a great place to meet people and get real information, both good and bad. If they have that in your area, you could check it out.

Miss Kat's Parents said...

Thank you so much for the correction! I was confused!!

Steve said...

My thinking on considering surgery went something like this:
* at the age of 50+, my hearing was unlikely to improve but very likely to get worse (well, realistically, everyone's hearing gets worse almost from birth or perhaps even before that)
* in the 30 or so years I have left (God willing), it's unlikely that gene therapy or other technologies will have developed to the point where they can safely be used on human beings
* CI technology has been around long enough that it's relatively safe and well understood surgery; certainly not experimental. Most of the developments in recent years have been and continue to be in the external electronics and software.
That said, there's a cost to everything. The loss of residual hearing is a big minus. For me, there wasn't a lot to lose there but for someone with a hearing loss that's severe rather than profound, I think that this should be a major factor.

Nabeel said...

I took that risk last Wednesday. I was willing to chance it with my right ear which is a little worse than my left ear. But to be honest, I didn't have that much residual hearing to begin with... I'm profoundly deaf anyway. It might have been a different story if I could actually understand some speech with hearing aids, but that wasn't the case.

SpeakUp Librarian said...

Thanks everyone for the great discussion. It does seem that the consensus is that it's a personal decision depending on your level of residual hearing and your own "squeamishness" as Ms. Toast Burner said.
Jelly, as always thanks for commenting!
Miss Kat's Parents, welcome to my blog. Thank you for sharing your daughter's experience and how you viewed the risk of surgery.
K.L., that is a great idea of meeting with others who have been through the experience. Through my local hearing loss support group, I have met two people with cochlear implants. For one of them it was a great success for the other it hasn't helped her hear better.
Steve, I really appreciate your thoughtful analysis of the factors that would influence your decision on it. Thank you for commenting!
Nabeel, I wish you the very best. Thank you for sharing your story.

deafdude said...

That's a good question and ive thought about it. Right now CI isn't worth the risk because if I end up hearing worse with CI(you met one who did) I probably can't go back to HAs since CI usually destroys your residual hearing.

The more residual hearing a person has, the more risky it is. I have only 75db loss(at 250Hz) and my audiologist believes ill benefit great from my Phonak Naida V up HAs when he reprograms them and adds transposition.

Besides id rather save both of my ears for stem cell treatment that can reverse part of my loss. CI isn't a cure and I am waiting for a cure so ill hear much better with HAs and will hear some sounds without HAs, something ive always wanted to and something you know what it's like to hear unaided.

SpeakUp Librarian said...

Thank you for your comment, deaf dude. I'd like to learn more about stem cell treatment.

Brakeshoe said...

Good morning! I'm at the Last Chance Cafe & am at tipping point for a cochlear implant, too. Check out Sara's website www.sarasera as she documents her experiences w/residual hearing. She was implanted last Wednesday; acttivated two days ago. She's @sajego on Twitter, her website is http://www.sarasera.com My twitter ID for hearing impairment issues is @Hi_Dan

Dan Schwartz
Cherry Hill, NJ

Mog said...

Sarah, I suppose the real reason I am having a CI is that I need to be able to hear to work. No work, no money.

To me it's a no brainer. The risks of surgery are low, I am having a new electrode that is designed to preserve the existing hearing, for what that's worth. The risk of my life going downhill if I don't have surgery is high. I no longer want to live a lonely life, with just captioned TV and a computer for company.

jelly said...

Thanks for clearing up my comment K.L.
I meant, I am deaf NOT to deaf for an implant.

Sorry for any confusion!!

SpeakUp Librarian said...

Hi Dan,
Thanks for posting the link to Sara's blog. I was just reading it at noon and thinking how appropriate her experience is to this discussion. I was meaning to add a link and you beat me to the punch.

SpeakUp Librarian said...

Hi Mog,
I understand. That's why I wear hearing aids and occasionally an assistive listening device at work. I want to stay in the game!
I hope the cochlear implant will bring you everything you need to continue working in your profession and expand your social opportunities. It seems to have made a wonderful difference for the bloggers I read.
All the best,

deafdude said...

Ill be posting an article on stem cells to treat deafness on my blog with my comments. I am going to be waiting the 10 years for it then get my hearing improved.

Mog, you have rights and your employer can't discriminate any disability. Your company must make accomodations. Also you don't have to be loney, find people who respect others who are deaf.

SpeakUp Librarian said...

I'll look forward to reading your post, deaf dude.

Mog said...

Deaf dude
my employer does make accommodations. I work in a hospital and soon I will be at the stage where I won't be able to understand what some patients say. So unless I have someone with me to tell me what that patient has said I won't be safe to practice. Who would pay for someone to be with me to hear for me?? We have to accept that not everything can be accommodated.

If you feel you can last 10 years then good for you. I know I can't.

As for being lonely, I have plenty of friends, but not being able to join in completely is isolating. I'm not the only deaf person that feels this way.

K.L. said...

I'm not sure this will help, but it might. For people over 10 years of age, there are several factors that can help determine how well a person will do with an implant. First is how much hearing did you have in the past? The better your previous hearing, the better the chances are that you will do well with the implant.

How well do you speak? For whatever reason, the better a person's speech, the better they seem to do with the implant.

Last, but not least, is how determined are you? What you hear first will probably be annoying high pitched bells, tones and chimes. It will take time for your brain to make sense of the sound. The more determined you are, the longer you will wear the implant, even if the sound is annoying. You will keep up with speech therapy, and you will be patient and understand that this is a long journey, not a quick fix.

Many of the gains can be seen in about 6 months, but it can easily take 2 years to realize the full potential of your progress with your implant.