Hearing Loss Help  

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.

by Neil Bauman, Ph.D.

A man asked:

Which is better, hearing aids or cochlear implants?

The true answer is “It depends.” You see, it’s not hearing aids or cochlear implants, rather its typically hearing aids first and then, when your hearing aids no longer significantly help you hear, its time to see about getting cochlear implants.

If hearing aids can significantly help you, you are typically not eligible for cochlear implants. However, when your hearing aids no longer significantly help you, its time for you to investigate getting cochlear implants.

To be eligible for cochlear implants, as a rule of thumb (and the rules keep changing), the hearing in your better ear has to be severe or profound, your word recognition has to be under 40% and hearing aids cannot significantly help you.

Incidentally, some new research has revealed that getting a cochlear implant in your worse ear and wearing a hearing aid in your better ear can produce better directionality of sound, better understanding of music and speech and more natural sounds than getting two cochlear implants—at least in some people. Therefore, the answer to your question may be—get one of each if you are eligible.

by Neil Bauman, Ph.D.

A concerned mother wrote:

I have a daughter who was born with congenital CMV [Cytomegalovirus], and she experienced a progressive hearing loss. She was fitted with hearing aids at 13 months, and she has had them for two months. It is great to hear her making more sounds and responding to more sounds. I am encouraged by her progress, but I am also wondering how much benefit she can get with her hearing aids versus what a cochlear implant could offer. I have difficulty trusting that my daughter’s hearing aids are giving her enough sound information! (And of course she can’t tell us!) Any input would be greatly appreciated.

Actually, your daughter is telling you that her hearing aids are working for her by paying attention when you talk, and is now talking herself. These are both good signs.

Hearing aids aren’t perfect by any means, but you typically can’t get a cochlear implant until you can no longer receive much/any benefit from wearing hearing aids. Therefore, your daughter may not be a candidate for a cochlear implant at this point.

If your daughter is progressing normally for her age, then I’d think the hearing aids are doing an adequate job. However, if she is way behind, then by all means have her evaluated for a cochlear implant. (They won’t give her a cochlear implant if she does not meet their criteria. Therefore, if you are really wondering, you could have her evaluated for a cochlear implant now—then you’d know for sure.)

by Neil Bauman, Ph.D.

A lady wrote:

I have bi-lateral Meniere’s and was recently approved as a candidate for a cochlear implant. Your article “Which is the Best Cochlear Implant?” published December 6, 2007 mentions one surgeon in Baltimore as being “one of the top rated CI surgeons anywhere”. Could you tell me how us non-medical people can find a list or ranking of CI Surgeons? What was your source that told you Dr. Niparko was top rated? A medical journal? A magazine article? I’d love to see the source so I could find a top rated CI surgeon near me.

As far as I know, there is no list ranking cochlear implant surgeons as such. What you need to do is “listen around” and see who’s name comes up the most often in relation to cochlear implant surgery; who is thought of most highly; who has a particularly good success ratio with few complications; who has done hundreds or thousands of CI surgeries; etc.

When you do this you’ll hear names like John Niparko and other good CI surgeons. Those are the ones you want to go to.

One way to “listen around” is to join on-line groups specializing in cochlear implants such as the SayWhatClub‘s CI list (click the button on “Joining”) and ask the people there which surgeon they had, and who they recommend in their area. You’ll learn a lot that way.

 by Neil Bauman, Ph.D.

Advanced Bionics produces their “Bionic Buddy” calendar each year. Their website says,

Advanced Bionics has a longstanding tradition of creating a fun and inspiring calendar each year, presenting Bionic Buddy and highlighting children with cochlear implants. The 2009 Bionic Buddy Calendar is a wonderful opportunity to showcase our pediatric recipients and what they are able to hear with their cochlear implants. Parents, family members and friends appreciate being able to show off their own kids and school staff welcome the chance to show other kids that they’re not alone!

Each month it shows color pictures of 21 children with cochlear implants, and showcases another one.

To get Advanced Bionics (www.bionicear.com) “Bionic Buddy” calendar which is for kids and parents of kids with cochlear implants, click the above link . There is no charge.

 by Neil Bauman, Ph.D.

A lady asked,

Can you direct me to some good sources to read about cochlear implants?

To learn first-hand about cochlear implants and to get many of your questions answered, the nicest (friendly, no brand wars) on-line group for cochlear implants is the one in the SayWhatClub. Ask to join the CI list.

In addition, I’d go to the 3 main cochlear implant manufacturers web sites. They are:

Advanced Bionics

Cochlear Americas

Med-El US

by Neil Bauman, Ph.D.

A man wrote:

I had sudden hearing loss and need your help. If you had to have a cochlear implant today, which implant would you have, and where would you have it done?

Fortunately for me, I live close to one of the best cochlear implant surgeons, Dr. John Niparko at Johns Hopkins in Baltimore. (It’s only about 50 miles away.) Therefore, that would be my first choice. Don’t get me wrong. There are good CI centers scattered around the country, but Dr. John is one of the top rated CI surgeons anywhere.

As for which brand to select, you have three choices—Cochlear Americas, Advanced Bionics or MedEl. All three are about equal—that is, you will hear about the same with any of them.

Be sure to check out the reliability and track record of each of the CI manufacturers. They are all different. Decide which seems best for you.

Also, since the CI manufacturers are always coming out with new features, and leapfrogging over each other, the CI I’d choose today may not be the same make or model I’d choose tomorrow. Therefore, when the time comes that you need to make your decision, look carefully at the features that are available for each make. Then consider which features are important to you for your own specific lifestyle and situation.

For example, if you will need MRIs in the future, you may want to choose the CI with the highest Tesla rating without having to have the internal magnet temporarily surgically removed before you can have an MRI.

Some CIs have much longer battery life than others, so this may be a consideration.

Also, if music is important to you, then you may want to choose the CI with the most electrodes (currently 120 “virtual” electrodes) and the best music strategies (maps).

Perhaps the appearance of the external parts is important to you, or the specific controls, or the accessories available, or the kind of maps provided. There are so many features—and only you know which of them are important to you.

You also want to check to see if the model you choose can be upgraded when new technology becomes available without having to have the implanted part taken out and replaced.

The above are some of the “physical” things to look for. However, these are relatively minor when compared to two major things you want to check out.

First, of course, is getting an experienced CI surgeon. Get one that has done many cochlear implants and has an excellent track record.

Besides having a good CI surgeon, the next most important thing is to have an audiologist that is experienced in the brand of CI you are getting. You want someone that can program the best maps for you, because this is what ultimately gives you your hearing back. At the same time, you want your CI audiologist to be located reasonably close to you since you will be going back for a good number of mappings in the coming months and years. You don’t want to have to fly across the country every time you need your map changed.

Sometimes some of the above decisions will already have been made for you. For example, certain doctors and implant centers only implant certain makes—so if you want a given doctor, you have to go with the makes he implants. Likewise, your CI audiologist may have expertise in just certain makes—so choose a make that they are expert at mapping.

This is just a sampling of some of the things I’d consider. As you can see, there are a lot of factors to consider. All things being equal, go with the CI that comes out on top in your rating of each of the above factors as you see it.

by Neil Bauman, Ph.D.

Several people have asked me to address the issue of cochlear implants (CI). Although I don’t have a cochlear implant, I know hundreds and hundreds of people that do have cochlear implants.

My friend Denise Portis is one of them. She also has a way with words. Here is her witty assessment of what a cochlear implant is not, and then what it is. (Used by permission.)

_________

Many people think a cochlear implant “fixes” your hearing. They may think that now that you have a cochlear implant, you have perfect hearing and are “normal”. I realize that most people talk about how things are different by discussing things “alike” first, followed by how things are “different”. However, since I believe there are many misconceptions about CI’s, I’ll start with what they are not.

What a Cochlear Implant is Not

1.  A cochlear implant does not make you Jamie Sommers. You are not the Bionic Woman (or man) and can hear things 4.2 miles away!

2.  A cochlear implant does not make you a lightning rod. Someone with a cochlear implant is not more likely to be struck by lightning than someone else. Sure, if you are playing outside in a lightning storm on a hill without cover, holding a golf club in your hands, then yes, you might be hit by lightning. But it’s not because you have a cochlear implant in your head!

3.  A cochlear implant does not provide crystal clear hearing so the recipient never has to say “huh?” again.

4.  A cochlear implant’s magnetic coil is not a “plug”. I realized my sister must have thought this when she winced when I took it off to show her. There is not an opening to your brain. It doesn’t “plug in” like a cord in an electrical socket. There are no gruesome wires or frankensteinish types of protruding pieces of metal.

5.  A cochlear implant does not make someone begin to have balance problems—at least not usually—although I have heard it can happen. That is why good surgeons always run a battery of tests which include ways to detect if you already have vertigo problems. I have always been “dizzy” (though never blond) and I almost failed the tests at Johns Hopkins on vertigo. I have a mild version of Meniere’s disease, and looking back, I think it began when I was around 18 years old. I did not begin losing my hearing until I was 25.

I have a history of accidents a mile long. Every emergency room doctor knows me by name. I break bones, fall a great deal, and run into things. I actually have no memory of not being this way. Growing up, I was told I was “clumsy”. My CI didn’t make me dizzy. I was already dizzy. I realize that some people begin having balance problems after receiving a CI, but as I understand it, this is the exception to the rule, and not common for CI recipients.

6. A cochlear implant does not allow you to hear every kind of environmental sound. There are still things I don’t hear at all, or don’t hear well.

What a Cochlear Implant Is

1.  A cochlear implant is a bionic type of device surgically implanted into the cochlea of your inner ear. Some consider it a prosthesis. The recipient is “mapped” frequently in the beginning (sort of like being programmed) and then usually once a year for life after receiving one. Each mapping allows adjustments to enable you to hear things more clearly. At the same time the electrodes are tested and checked.

2.  A cochlear implant can be worn anywhere except in the water. One cannot scuba dive after receiving a CI (due to increased pressure). Some, like my own Nucleus Freedom, are “splash resistant”. I can get caught in a rain-storm without an umbrella, or hop into the shower accidentally without removing it and not destroy it. Certainly, should those things happen, I would promptly put it in my Dry ‘n Store (an electronic drying device), nor would I ever do those things on purpose. I mean I do shower on purpose, but I don’t jump into the shower with my CI on with the intent of destroying it. (In hindsight, I thought I should assure you that I do shower, and do so on purpose!)

One can swim with a CI, but not with the outside components attached. Water tends to ruin them. As long as you are not scuba diving, you can still enjoy swimming, snorkeling, and rain showers. You just “play smart” and take off the external speech processor.

3.  A cochlear implant allows you to hear again—when you have reached the point that you no longer can. “Hearing again” and “hearing perfectly” are two different things. One doesn’t grouch that they aren’t “normal” when they can hear after they could not. I can talk on the phone now (in a quiet room with my own phone), I can hear in church, talk to people face-to-face and in small groups. I do not do well in restaurants, large groups, concerts, etc. without special assistance from infra-red or FM assistive listening devices. Loop systems are my favorite way to hear in these “tough” environments. You walk into the room, switch your CI to t-coil mode, and you “hear” without the background noise.

4.  The magnetic coil of my implant connects to another magnet securely embedded in my skull. The magnets connect very well through my skin. Nothing shows, and I try very hard not to appear “gory”. I’m rather proud of the fact, that I’m probably one of the few people I know who can lean into the refrigerator and “lose” their ears.

The weirdest place I ever lost my CI was at the grocery store in the pickle aisle. I was leaning down to try and find the specific type of pickles my family likes when “whoosh” off my CI flew to stick to the metal lid of a pickle jar. As I was desperately looking for my CI, a lady came by, smiled and said, “Are you pregnant honey? Looking for pickles?”

I was so astonished that I replied, “No! I’m looking for my ear!” Needless to say she shrieked and ran.

5.  A cochlear implant can sometimes mask tinnitus, a common symptom and side effect of a progressive hearing loss. Tinnitus may be a humming or ringing sound in your ears. The CI can mask this “sound” and keep you from hearing it. However, I have also met some people that now have tinnitus (when they remove their CI) whereas they did not have it before.

I’m used to the ringing. When I take my CI off at night, the ringing begins, but it doesn’t bother me, and I go right to sleep. When hearing the ringing sound, I no longer shout, “Hello? Who’s there?”

6.  My experience with my cochlear implant is not like anyone else’s. I still hear new sounds every day. But my experience— what I can hear and what I don’t hear—is as unique as my “map”. No two recipients have exactly the same map or the same experience with their cochlear implants.

________

You can read the original of this article on Denise’s blog here.

 by Neil Bauman, Ph.D. 

 A lady wrote:

I had an incident yesterday trying to give blood. I was stunned when I was not allowed to give blood because I had marked (under previous surgeries) that I had a cochlear implant (CI). The head screener (an RN) argued with me that I didn’t know what I was talking about—any time someone has an organ or tissue implanted from a cadaver or live donor they can never again give blood. I explained that my implant was all man made, but she insisted that was impossible. She had never heard of it. Two supervisors (one an M.D.) got involved, and then one made a call to my surgeon and got the misconception cleared up. Incredibly, the staff running the drive just happened to be from my CI center hospital.

I know that a lot of the general public are in total ignorance about cochlear implants, but I find it incredibly hard to believe that so many of the medical community (doctors and nurses) are also still totally ignorant about cochlear implants. This major medical advance is not new. It has been around for almost 30 years!

by Neil Bauman, Ph.D.

Strange as it may seem, some children are born deaf, but “regain” their hearing a few months later without medical intervention according to Dr. Joseph Attias at the University of Haifa in Israel.

Amir Gilat, in his report “Some children are born with ‘temporary deafness’ and do not require cochlear implant,” explains:

There are two causes of congenital deafness among children. One is the lack of hair cells that activate the auditory nerve. The second cause is a malfunction of the nerve itself. A child may be born with what appears to be a normal inner ear, but the hair cells do not “communicate” with the auditory nerve and the child cannot hear.

Typically, doctors recommend that deaf children receive a cochlear implant as soon as possible so language develops normally. However, for those children with this kind of “temporary deafness” a cochlear implant is totally unnecessary as their hearing may return to normal over a period of 17 months or so.

According to Dr. Attias:

Because children typically go through a series of tests and evaluations by different doctors, a process that often takes months, there are cases of children who were initially referred for a cochlear implant who didn’t have it done because their hearing comes back.

For example, Dr Attias said:

I called parents and found seven cases of children who were diagnosed as deaf, did not have a cochlear implant, and began to hear.

Gilat continues:

Dr. Attias then found five more children who had been referred to him for pre-operative testing who had begun to hear in the meantime. By the end of his clinical research, he had identified a “window of opportunity” of 17 months during which deaf children may begin to hear.

Dr. Attias cautions:

A child whose deafness is caused by a malfunctioning connection between hair cells and the auditory nerve should nothave a cochlear implant in the first 17 months of life. Research results show the possibility that at least some of these children undergo the procedure for nothing.

Since a cochlear implant does not give normal hearing, such children would actually end up with worse hearing than if they had not received a cochlear implant. Therefore, the trend to implant children as young as 8 months or so would not give enough time to evaluate whether their hearing might “come back” on its own.

Interestingly enough, some children only develop partial hearing rather than normal hearing. Since they are hard of hearing, these children can be fitted with hearing aids rather than having a cochlear implant. Gilat concludes, “Dr. Attias is now researching ‘temporary deafness’ among young children, looking to find a way to identify those who will recover and those who will not.”

As a result of this research, if you have a child that is diagnosed as deaf at birth, you might want to have hearing testing done for a number of months to see whether any hearing is showing up before you opt for a cochlear implant for your child.

Reference: Eurekalert May 16, 2007 http://www.eurekalert.org/pub_releases/2007-05/uoh-sca051607.php.