by Neil Bauman, Ph.D.
A man wrote:
I read your article ‘Hair cell regeneration—looking beyond the hype’ which was very encouraging. Currently, my hearing has been severe to profound since age 13. I’m 48 now, but I’ve worn a hearing aid since I was three.
I am now in the process of undergoing a cochlear implant. In the meantime, I’m still researching other options to improve my hearing. I’ve heard or read a lot of negative things regarding cochlear implants such as equipment failure, increased tinnitus, loss of residual hearing, expensive, etc.
My doctor is confident I will benefit from the cochlear implant and that it should improve my hearing much better than currently. This is very encouraging. However, something is drawing me to hold off. I’m wondering if there is something better out there. It seems that stem cell therapy sounds more promising. I fear that I will regret having the cochlear implant when I should have been more patient and waited for the stem cell therapy.
I’ve read that other countries are performing clinical trials but none here in the USA—but I’m not sure if these reports are just hype or are real.
Would you care to give me your opinion on stem cell therapy. Perhaps I’m wasting my time thinking about the stem cell therapy?
I have written a couple of articles regarding hair cell regeneration. You mentioned my article “Hair Cell Regeneration”“Looking Beyond the Hype” (November, 2004). In addition I have written, “Hair Cell Regeneration”“Overcoming the Challenges” (November, 2004). As you have read, yes, research on hair cell regeneration by using stem cells is progressing, but no, it is not there yet.
There have been a few recent reports floating around the Internet of a college girl, Chloe Sohl, that had stem cell therapy with supposedly spectacular results. Here is one such report, “Stem cell therapy raises hope for autoimmune hearing loss“.
Another of these “reports” paints stem cell therapy as wonderful, and that it is the stodgy FDA that prevents it from happening in the USA right now. This report is entitled “Stem cells for deafness begins human trials? Great news!“.
These articles make it seem like stem cell therapy is already here and is working great. This is just not true. Yes, they are experimenting on people in countries where they don’t have strict medical standards, but the results are not all what they are glowingly painted to be. There are still serious side effects that need to be overcome. Before you get sucked in by all the hype, read the article “Dose of Reality: Beware of Clinics Touting Stem Cell Panaceas“.
So far, I’ve only heard of this one “success” story using stem cells to improve hearing—and the funny thing is that there is no corroborating evidence from any other stem cell researchers supporting this. Thus, I have to think there are numerous issues that are not being told. If it was a true medical breakthrough, I’d have expected lots of attention about this case by the media and other stem cell researchers—but that is singularly lacking. Thus you need to be very cautious at this point.
Personally, I think you’d be wise to not even consider stem cell therapy until it is approved by the Food and Drug Administration (FDA) here in the USA. When that happens, you can be more confident that it will be a good option for you.
As I have pointed out, using stem cell therapy safely to restore hearing is still likely 20 years (more or less) away. It is not imminent at this point.
For a more realistic view of where stem cell research is at, read my recent article, “Hair Cell Research—Some Unexpected Results” (December, 2009).
Furthermore, from everything I’ve read so far, stem cell therapy isn’t the cure for hearing loss that it is made out to be. Yes, hearing gets somewhat better—but nowhere near back to normal. So far they are talking about a 10 to 20 dB improvement (which is definitely a step in the right direction), but you’d still be very hard of hearing. Hopefully, they will find ways to improve on that in the future.
Thus, at present, for example, if you have a profound hearing loss at say 100 dB—you could expect your hearing to improve to maybe 80 dB with stem cell therapy, which would bump you up to the severe hearing loss class. That’s better, but not good.
In contrast, with today’s cochlear implant (CI) technology, you could expect your hearing to improve all the way up to 20 to 30 dB. That’s in the normal range, and that’s really good!
Thus the CI is still the only real option you have today. True, you will find a few people have problems with their CIs, but the vast majority say that in spite of any problems, if they had it to do over again, they would do it again in a heartbeat. That’s how satisfied they are with their cochlear implants. Something like 98% or more report “success” with their CIs—which is a pretty good success rate.
Based on my knowledge of the results of hundreds and hundreds of people I know that have received CIs, I agree with your doctor. You do have a good chance of getting more/better hearing than you have now. It is probably well worth the risk.
Although stem cell therapy sounds promising, this technology is not ready for the big time. There are still far too many unknowns, whereas the CI technology is proven to work.
Since you are worried that stem cell therapy may help you in the future, here’s one solution for you to consider. Why not have a CI in your worse ear now, and wear your hearing aid in your better ear. Then, if and when stem cell therapy has been proven, and approved by the FDA, you could have it done in your better ear and still wear the CI in your worse ear.
That way you could get the best of both worlds—be able to hear better now, and possibly hear much better later.
Based on my research and my serious wondering if this will even be posted here, we don’t know what the truth is about the implants. We may know what the implant companies tell the FDA are their research results.
I’m close to 60. Was hearing and it deteriorated. It takes more than a strong-willed person to get through the horrendous processing of sound of an implant Deaf may be better for me and many many hearing latent deaf people. Websites owned by cochlear companies scrub possible negative comments. I don’t curse and I simply concurred with a woman on hearingjourney (AB – unbeknownst to me) that I was scared, too. They gave me until 10 p.m. to remove my comment. I was asleep by 7 and they removed it.
Last week I made a pretty harmless remark about something and at the age of 60, got 500 demerit points – more than all demerits in my lifetime (of none). There is cover up going on here. So don’t tell me facts and research results. It works for some, I’d like to get in an MRI machine and have it removed automatically. But this will likely not be printed. I’m but one person. How many other hearing to non-hearing are going through this? I don’t know because the truth is not out there. I got an AB implant for heaven’s sake. But I know data scrubbing (worked in IT) and I know they have a right to do that – lie on their websites. I also have a right to not be treated like a two-year old and that will not happen with the huge profits in the industry.
Hi S:
Actually, we know a lot of truth about implants. How? By talking to the thousands and thousands of people that have cochlear implants already. If you don’t trust the CI company studies or the government, you can always ask the people and make up your own mind.
It is true that if you were born deaf and get a CI later in life, typically you won’t do as well as someone that had normal hearing and lost it suddenly and then got a CI, nor as well as someone born deaf who got a CI in the first 2 or 3 years of life. That’s just the way it is.
There is nothing wrong with being scared. Many people thinking about getting CIs are scared. But the cool thing is that as they talk with others who have CIs, their fear mostly gives way to anticipation as their implant date draws near. And so many, after they have had their implant for a couple of years wonder why they were so scared in the first place. In fact, the vast majority of people with CIs state, “If I had it to do all over again, I’d do it again in a heartbeat!” That is how most people with CIs value their new hearing with CIs–even those that have less than stellar results. It is almost always better than the hearing they had before.
If you so distrust the company-owned CI forums, why don’t you join a supportive CI forum that is totally independent of all CI companies, one where genuine support and comfort and friendship are the norm? One of the best, if not the best is the CI list of the SayWhatClub. (wvww.saywhatclub.com).
Maybe I’ll see you there one day
Regards
Neil
Hello Dr. Neil,
Not sure if this will be seen by you but here goes. I can see that the last note was almost 4 years ago. can you please advise on the current status of stem cell research and how far away it is?
Hi Vincent:
There hasn’t been a lot of articles talking about stem cell therapy lately in the popular hard of hearing magazines. To me this indicates that researchers are still chugging along, but have not had the successes they need to do human trials and finally bring their products to market. Thus, I think it’s still some years away. I wouldn’t hold my breath.
Cordially,
Neil
Hi Neil! Any update that you’ve heard of or seen with Stem Cell Therapy? I had sudden deafness occur in my left ear and I’m terrified of losing my hearing completely, and also the idea that CI’s would destroy my inner ear and I’d never have a chance to hear naturally again, or receive the stem cell therapy.
Hi Natalie:
I haven’t heard much lately. I think some are using it but I don’t know what the real-life results are. Personally, I don’t think it is ready for widespread use–unless you like being a guinea pig and are willing to risk all sorts of still unknown side effects. I’d wait until it is in general use and let others be the guinea pigs.
Just because you have had sudden hearing loss in one ear doesn’t put your other ear at increased risk. So I wouldn’t worry about this possibility because it may never happen. And if it did sometime in the future, you could try stem cell therapy in one ear and if it didn’t work, you could still have a CI in one or both ears. So you shouldn’t be left deaf in both ears.
I know hundreds and hundreds of people with CIs and they are all glad they got them–even though for some, hearing is not “normal”, but many say they they hear “normally” now, or close to how they remember sound. So you get used to it and are ever so happy you can hear again.
Cordially,
Neil
I do voice overs and broadcasting for a living. Would CIs affect or hinder my ability to work in my field?
Hi Natalie:
I’d say CIs would help you as you’ll hear your voice better so you will pronounce words better. There are several people that do the news/weather etc. that wear CIs and you’d never know they had lost their hearing the way they speak. I know the weatherman on a Baltimore TV station got a CI as his hearing dropped. And of course there is Rush Limbaugh who lost his hearing rather suddenly and now wears CIs and continues with his programs.
I know many people with CIs and a number of them have said how other have told them that their speech improved once they got their CIs. I’ve never heard of a case where their speech became worse.
So all things being equal, you should have equal success in your line of work.
Cordially,
Neil
Thank you so much for answering all of my questions, and for all of your help. This really helped to alleviate some anxiety that I’ve been having. I’ve been so stressed that I’ve even been having trouble sleeping. So thank you again!