Hearing Loss Help  

by Neil Bauman, Ph.D.

Back in February, 2006 I wrote about a website called “Fomdi” that finds captioned movies near you. Fomdi was much better than nothing, but it had its limitations. Now something better has come along.

On May 18, 2009, DeafCode LLC released the beta version of their brand new “Captionfish” captioned movie finder. This free website automatically provides information about captioned movies in your area based upon your computer’s “address”.

Their “blurb” reads: “It is the first website to integrate an Instant CC Film Finder™, which provides immediate and effortless custom results within 30 miles of a chosen location, refreshed on each visit to Captionfish.com.”

I found it better to put in my own address manually rather than accept where Captionfish thinks I am. For example, when I first tried Captionfish, it calculated its results as though I lived in York, PA, not in Stewartstown, PA where I actually live—a difference of about 20 miles. When I put in my Stewartstown address, it replaced the 1 movie in my “area” with 3 others that were actually closer to me, but to the south.

By default, Captionfish shows you the captioned movies that are showing today within 30 miles of your location. You can easily change this to the next 7 days if you want to. You can also set the radius from 30 miles to 15, 45 or 60 miles depending on how many movie theaters are near you, and how far you are willing to drive.

Another cool feature of Captionfish is that it indicates whether the theater uses Rear Window Captioning (closed captions), or whether the movie is open captioned.

In my opinion, open captioning is much nicer than Rear Window Captioning as there is nothing you need to have (a small, smoked glass screen available at the theater, but you need to ask for it), or do (set up the screen and aim it at the back wall where the captions are actually displayed), and you can sit anywhere (and not only where you get a clear shot at the back wall).

With Rear Window Captioning, you read the captions off the small, smoked glass screen in front of you while you watch the action on the big screen at the front of the theater. Thus, you are trying to focus on, and watch, two different places at once, not always an easy task.

Now, back to Captionfish: when you click on the “Movie Details” link, Captionfish shows you a printed description of the movie, and also shows you a short preview of the movie. Note, this preview is also captioned! Nice!

Another cool feature for those hard of hearing people on the move is that Captionfish provides a mobile website optimized for mobile phones so you can start driving and find the film you want as you go.

For those of you that use custom RSS feeds, Captionfish enables an RSS feed so you can check for the latest captioned film results using your preferred RSS reader.

To find captioned movies in your area (Captionfish just covers the USA), simply click on Captionfish. It’s that simple!

by Neil Bauman, Ph.D.

Otosclerosis (OH-toe-sklare-OH-sis) is a condition where spongy bone grows in the middle ear and often “fixes” the stapes (stirrup), the third bone in the middle ear, to the oval window so it can’t vibrate freely. The result is a conductive hearing loss. To correct this condition, an ear specialist performs a surgical procedure called a stapedectomy (stay-pee-DEK-toe-me). He typically removes the fixated stapes and replaces it with a plastic or metal prosthesis.

Now comes the insidious part. IF the prosthesis contains any magnetic metal (iron, nickel, cobalt), then you mustn’t have an MRI or you can totally destroy your life in a heartbeat and never know about it until too late. This actually happened to “Stephanie” (not her real name). Here is her story. She writes:

I came upon your article “Protect Your Balance System—Or Else…” and was so happy to find something that describes me so well.

Five years ago I had a MRI done. I explained to the attendant that I have a wire [the stapes prosthesis] in my inner ear to help with my hearing loss. (I had this surgery back in 1972. I had it looked at again in 1985.) However, in 2004, the hospital did a CT scan and said there was no wire there. I then had the MRI. Immediately upon coming out of the machine, I discovered I had lost my balance. I could not walk. I was nauseated, I could not hear as well, and the noise in my head was unbearable.

To make a long story short, I had to have emergency surgery on my ear to see if any fluid was draining [perilymphatic fistula]. I then had to take physiotherapy for two years for my balance. My eyesight also changed 50%, but has since gone back to the way it was.

After this fiasco, the hospital had another look at my CT scan and they saw the wire but it was too late. Please let people know just how much damage can be done to your body if doctors miss finding this metal prosthesis.

My ENT said the damage to my inner ear was like getting hit in the head with a baseball bat at full speed. (That is what the tiny stapes prosthesis did to my inner ear under the influence of the powerful magnets in the MRI machine.)

I have come a long way in healing but I still have issues. I am still learning everyday about things I cannot do. My first time going to a movie after the MRI was a disaster. I had to keep my head down during most of the movie. I was sick to my stomach, and my head felt like it was spinning. But I did not know this was from the damage caused because of the MRI and having a wire in my head.

I also lost more hearing in my ear. But it is different now than before. I can hear sounds, but I cannot tell where they are coming from. You can be right behind me talking but I do not know where you are. I call out to the person (usually my family) asking where are you. (To them, this is funny but it certainly gets to me at times.)

Also, if two people are talking, I cannot tell what they are saying. I can hear their voices, but the sounds are jumbled together.

If I am talking on the phone and another noise presents itself (like someone asking something of me) I lose the conversation on the phone and I don’t know what the other noise is, or what the person has said. Trying to cope in public—talking to people—is difficult. Ordering a coffee, lunch, etc. with noise around me is very hard. To see the look on the other person’s face, like I am retarded, is hard on me. I usually get my husband, or my girls, to order for me instead. It
makes me want to stay home because it is the only place I am comfortable. Needless, to say, I have not returned to work.

You talk about the emotional side of hearing loss, and until you go through this yourself, it is hard for other people to understand. My family is still trying very hard to understand what I can no longer do.

I can no longer multi-task. I cannot do two things at once. After 5 years, I still see this in my everyday life. For example, I cannot walk down the stairs with something in each hand. I have to put my body against the wall to steady myself and even then it is difficult, and my legs are very shaky. I cannot ride a bike anymore. It was such a shock to me when I first tried. My hands were shaking the handle bars back and forth with such force, that I could not stop. (I keep trying every year, but it is the same every time, and has not improved.) I will never get on a circus ride again in my life.

Walking is interesting. I feel every dip or hump in the road or sidewalk that no one else feels. My body thinks I just stepped down into a two foot hole, or I will not notice when the pavement has gone up and I stumble. I constantly “bump” up against my husband when we are walking together.

When I am in a store shopping, I cannot look at something one way and then turn my head to the other side because I get dizzy and it feels like I am being quickly shoved. This feeling goes away quickly, but if I continue to turn my head side to side, I get “shoved” again. Think how many times you turn your head side to side in a day.

When I stand in the shower, I plant my feet firmly against the sides of the tub, so my hands are free to wash my hair. I can keep my eyes closed a little while now—long enough to rinse the soap out.

And yes, when the lights are out or dimmed, I hold onto furniture, walls, etc. to get around.

You talked about memory and being distracted. I have been telling my husband I don’t “feel smart” like I used to. I have trouble finding words to have a conversation. I have to look at the person talking with such an intense stare, and try as hard as I can to hear and understand and remember what they are saying. It is so hard to understand why I am like this and explain to my doctor, or husband, or family that I feel dumb. I knew there was something wrong, but did not realize it was related to the damage done to my inner ear.

Needless to say I have slowed down in life, which is why I only feel comfortable at home.

Sometimes when I feel “down”, I think my family is better off without me and my problems. I know this is not true, but I can’t help feel like that at times. I have given them a copy of your article and asked them to read it. I think what makes all of this so difficult, is the fact that if you look at me, I look perfectly “normal” but I’m not.

“Stephanie’s” tragic story reveals the enormous life-changing differences that can result from destroying the inner-ear hearing and balance mechanisms in just one ear (and its even worse if it happens in both ears).

Therefore, if you’ve had a stapedectomy where a metal prosthesis was put in your middle ear, do not ever allow an MRI to be done on your body. Some of the prostheses used in stapedectomies are now made of plastic. If that is your situation, having an MRI shouldn’t be a problem, but check with your ear doctor to be sure.

by Neil Bauman, Ph.D.

A man wrote:

I was wondering if you had an opinion on a drug called STS (Sodium thiosulfate). It’s being developed to protect chemotherapy patients taking platinum-based anti-cancer drugs from hearing loss. Is this (STS) something that could be more broadly applied to the numerous drugs that could cause ototoxicity?

The research looks promising so far. It’s certainly possible that STS will help protect against hearing loss from some ototoxic drugs. Because different ototoxic drugs have different mechanisms of damage, the trick is to find an “antidote” that interacts specifically with each ototoxic drug.

I think more likely, that there will be different drugs found to protect hearing against specific classes of ototoxic drugs. For example, Sodium thiosulfate may work best for the platinum-based drugs such as Cisplatin, Carboplatin and Oxaliplatin.

For the aminoglycoside antibiotics, maybe iron chelators such as Deferoxamine will prove to be the ticket. Unlike how Cisplatin affects our ears, preliminary research indicates that aminoglycosides such as Gentamicin only are ototoxic when they react with iron found in the bloodstream. Thus, in this case, iron chelators that “soak up” excess iron in the bloodstream may prove to be the route to go. Another possibility is Aspirin taken with Gentamicin to do the same job.

In general, it seems that many ototoxic drugs produce free radicals that damage the hair cells and cause them to die. Thus, using free-radical scavengers to zap the free radicals before they can damage our hair cells is probably a good way to go as well. A couple of good, natural free-radical scavengers are N-acetyl-cysteine and glutathione.

What I took the long way around saying is that doctors need to research the exact mechanism that causes a drug to be ototoxic and then find the specific antidote. I think they will continue to come up with a number of specific antidotes as I’ve shown above, and also a number of general ones.

Unfortunately, few drugs are specifically studied to determine their ototoxic mechanisms. The notable exceptions are the platinum drugs and the aminoglycoside antibiotics. The rest get the short end of the stick, so it may be a long time before anyone finds a specific antidote for them. However, in general, the free-radical scavengers look like the most promising line of protection against ototoxicity available at this time.

To learn which drugs are (or can be) ototoxic, see “Ototoxic Drugs Exposed“. This book contains information on the ototoxicity of 763 drugs, 30 herbs and 148 chemicals.

by Neil Bauman, Ph.D.

A lady wrote:

Dr. Timothy Hain has written an article about low-dose Gentamicin treatment. What do you have to say about this treatment?

I respect Dr. Hain and his work, although, in my opinion, he is too conservative when it comes to the side effects of ototoxic drugs. By this I mean that he doesn’t think the ototoxic side effects are as common and severe as they really are.

Gentamicin, as a treatment for Meniere’s disease, has been around for quite a while. As the above article explains, in the past, high-dosage Gentamicin treatments have resulted in pretty significant ear problems including hearing loss.

This new low-dose protocol seems to cause far less damage to the inner ear than the high-dose one, and that is all to the good.

However, there are a few things this article doesn’t mention of which I think anyone contemplating this procedure should be aware.

First, a significant portion of the population have a genetic variant that leaves them very susceptible to aminoglycoside ototoxicity—much more so than the general population. Since Gentamicin is one of the aminoglycosides, it would seem wise to be tested to see if you have the 1555A-G variant of the 12S rRNA gene (see page 109 in my book “Ototoxic Drugs Exposed for more information), and if you have it, really consider whether the supposed benefit will be worth the greatly increased risk.

Second, this treatment can work great and “kill” the balance system in one ear, hopefully eliminating the severe vertigo. But what happens if later your Meniere’s switches to your other ear, as it does in approximately 20% to 25% of the people with Meniere’s?

With your balance system dead in one ear, you don’t dare do the same procedure on your other ear, or you will be left without any inner ear balance function at all. Among other balance problems, this will almost certainly result in such conditions as oscillopsia (bouncing vision), ataxia (staggering gait like you were drunk), blurred vision and other problems with your eyes. If this happens to you, you will never be able to drive again. You will likely find movement such as riding in a car, or even just watching action movies on your TV can make you “sick”.

Third, there are no guarantees that even in low doses, the Gentamicin will not affect your hearing. Gentamicin typically damages the balance system (a good thing in this case) more than it damages the hearing system (a bad thing)—but this is not always the case. Are you prepared to lose some or all of your remaining hearing in that ear? It can and does happen.

If you have severe vertigo with your Meniere’s, (and I can’t even imagine what that must be like) and nothing else works, you may want to try this treatment. Remember, this is a treatment of “last resort”—one not to be taken lightly.

If you have considered the above points, read the above referenced article carefully, done your own research and talked it over with your ear doctor, you are ready to make an informed choice. What you choose is up to you.

To learn more about Meniere’s Disease and some of the things you can do to help bring it under control, check out “Please Make My World Stop Spinning—The Agony of Meniere’s Disease“.

by Neil Bauman, Ph.D.

A frustrated wife asked:

Can you please offer suggestions on how to live peacefully with a hearing impaired spouse who refuses hearing aids and other assistance?

My husband recognizes he has a “mild to moderate” hearing loss however, he does not admit to its severity, or how it affects his day to day life. He did obtain hearing aids on a one month trial and “didn’t like them”. He only wore them for a few hours on two or three days and refused to attend any of the classes offered by the hearing aid dispenser on how to use and adjust to them.

I have become his “hearing aid” both in and out of our home. At home, even though our television has closed captions, he continually interrupts my TV viewing, or attempts at reading to ask, “What did they say”. He does have remote earphones for TV viewing, but prefers not to wear them.

For me to talk with him, I must stand in front of him to get his attention and then speak slowly and loudly. My friends and coworkers complain that my speech has become very loud.

When we are out of the house, i.e. his recent medical appointment, he only heard those looking directly at him. The remainder of the time, I repeated the questions for him. We have not attended a movie in years, and rarely dine out or attend social events due to his problem.

I do not think he is going to change his behavior patterns. What can I do to make our mutual lives less stressful?

You are in a tough position. You can continue to put yourself out and be his “hearing aid” so he doesn’t get too upset about his hearing loss. He will then be reasonably happy. This will bring short-term peace. However, you will have to give up your own interests to be his “ears”. This will cause you to become resentful and angry at him, and that will not be good for your marriage. In other words, you can have peace in the short term, but this will ultimately erupt in war.

The better way to handle this situation is to exhibit “tough love” (which will likely result in some warfare now), but ultimately, it will bring long-term peace and harmony as needed changes take place.

Let me explain what I mean. Currently, your husband is still largely in denial. You cannot effectively help people when they are in denial because they don’t believe there is a problem in the first place, so why should they address it?

Your strategy is to keep the peace by being an enabler (being his hearing aid as you said). This strategy just helps him keep on denying that his hearing loss is a real problem.

The only way he is going to get out of denial and accept that his hearing loss is a real problem is if you don’t be his “ears” anymore. You need to let him make his own hearing mistakes. This will eventually bring home to him that he really does have a hearing problem, and that it is up to him to solve it.

Your husband gave his hearing aids a very cursory trial (a few hours over 2 or 3 days is not a fair trial) and announced they didn’t work for him. This is part of the normal reaction that those in denial make. If they don’t really have a hearing problem, then of course they don’t need hearing aids. (I’ll bet he only tried them at your insistence—not of his own free will.)

You see, now is not the right time for your husband to be trying out hearing aids even though he really does need them now. A person is ready to try out hearing aids only after he reaches the acceptance stage in the process of grieving for his hearing loss, not when he is still in denial. Your husband is just not psychologically ready at this point to wear hearing aids.

In any case, when your husband eventually realizes he needs hearing aids, he also needs to realize that it will take his brain up to 90 days to adjust to wearing hearing aids. It does not happen overnight.

Furthermore, I’ll bet your husband went about it all wrong in learning to wear his hearing aids. He likely wore them in loud places right at the start, announced he couldn’t hear a thing and yanked them out. The proper way to learn to wear hearing aids is slowly. You start out with an hour or so the first day and add half an hour a day to that on each successive day. At the same time, to begin with, you only wear them in quiet situations, then in slightly noisier places and finally in noisy situations after you are reasonably adjusted to wearing them.

Now, what can you do to help your husband? First, you have to stop being his “ears”. You need to let him “hear” on his own most of the time. There are situations when it is ok to jump in—for example, in emergencies—but when you do it all the time he will never change because he doesn’t have to face up to the problems his hearing loss is causing.

When he interrupts you to ask, “What did they say?” when he is watching the TV, all you have to say is “read the captions” and go back to whatever you were doing. He can read the captions as well as you can.

When you want to talk to him, you need to practice good hearing loss coping strategies. You say, “For me to talk with him, I must stand in front of him to get his attention, and then speak slowly and loudly.”

Believe it or not, this is proper procedure when talking to hard of hearing people. First you need to get close to him because the volume of sound drops off rapidly with increasing distance. Second, you need to get his attention. Wait until he is looking at you before you say a word. Just doing these two things will save you a lot of repeats ,and reduce frustration in both of you.

When you are with him at the doctor’s office, if he misses something, instead of repeating it for him, say to the medical staff, “Look directly at him when you are talking to him so he can hear you”. Do this as often as you have to, and eventually they will learn.

I sense that you are missing dining out and attending various social functions since your husband can’t hear in such situations. There are a number of good coping strategies to use in such places—but your husband has to be willing to do them—and he won’t do them while he is still in the denial stage. You’ll have to wait until he reaches the acceptance stage.

When he is ready, dining, even in noisier restaurants, can work very well if he uses the right assistive devices. For example, I use a PockeTalker personal amplifier and lapel microphone. I just clip the microphone on my wife and put ear buds in my ears (or use my hearing aids and a neckloop instead of the ear buds) and hear her wonderfully well. He could do the same, and you could chat again without a lot of hassle.

For social situations he could also do what I have found effective for myself. In such situations I use a super-directional handheld microphone plugged into my PockeTalker, and again use either my ear buds or hearing aids and neckloop. This way, I hear very well one-to-one as I walk around and chat.

Your husband will not change his behavior patterns until you quit acting as his ears. Thus, the first thing you have to do is quit your “ear” job. Tell him that he is going to have to hear for himself from now on. It shouldn’t take him too long to realize that he needs help. I know it is hard to refuse to be his “ears”, but that is what you have to do—”tough love,” remember.

Doing this is not going to make your mutual lives less stressful in the short term. You have to let it get worse so he moves out of the denial stage and accepts his hearing loss. He has to accept that it is his loss and thus he has to be a big part of the solution. There is going to be a bit of “rough sledding” before he accepts responsibility for his own hearing. Statistics show that the typical person takes an average of 7 years from the time he acquires a hearing loss until he is willing to do something about it.

Typically, people work though the 5 stages of grief as they learn to deal with their hearing loss. Denial is the first stage. After the denial stage comes the anger stage. Be prepared for this anger when you do not help him. You are the closest person to him, so unfortunately, you will bear the brunt of his anger. Don’t take it too personally.

This is not to say that you don’t love and support him. You can largely do this, not by nagging, but by suggesting a good way to cope in any given situation—for example, more closer so you can hear better, turn on the light so you can see what they are saying, mute the TV (or other background noise) when you want to talk so you’ll be able to hear better, etc.

Once he gets through the denial and anger stages, (I’m skipping the bargaining stage here) then comes the depression stage. This is where he will essentially give up acting like a hearing person. This sets the stage for his becoming the best hard of hearing person he can be. As he progresses through the depression stage, get ready for good things to happen as he starts to accept his hearing loss.

It is in the acceptance stage that he will become willing to do what he needs to do in order to hear as well as possible. Now, at last, he will be willing to try hearing aids, or use a an assistive device such as the PockeTalker, or read the closed captions on the TV. This all takes time. You can’t rush it. Each person progresses through the grieving process in his own time. (It often depends on how “stubborn” he is. Some of us men can be pretty stubborn, you know.)

The good news is that when he progresses to the acceptance stage, you will find it reasonably smooth sailing again, but to reach this point, you will have times of “heavy seas”. Encourage yourself that this too will pass. You just need to persevere. It won’t be easy, but it will be worth it!

You (and he) would do well to read my book, “Grieving for Your Hearing Loss—the Rocky Road from Denial to Acceptance“. This short book has helped many work though their grief due to their hearing losses.

Also, my latest book, “Keys to Successfully Living with Your Hearing Loss” covers the essential keys needed to successfully adjust to living as a hard of hearing person.

When he is ready, your husband may be interested in using a PockeTalker with a lapel microphone and/or a super-directional microphone. They really do work for me. They should also work well for him also.

by Neil Bauman, Ph.D.

A man asked:

What can you tell me about Neuromonics. Is it for real? Does it really work?

“Neuromonics Tinnitus Treatment is a relatively new treatment for tinnitus. Developed by audiologist, Paul Davis, Ph.D. of Australia to reduce the disturbing effects of tinnitus, Neuromonics opened for business in Australia in 2001. It came to the USA in late 2005. More and more tinnitus treatment centers are adding it to their arsenal of tinnitus treatments.

You see, no one tinnitus treatment protocol works for everyone. Some tinnitus treatment protocols work for some people and not for others depending on the kind and cause of their tinnitus. Neuromonics is the same—it works for some people but not for all….”

This is the beginning of my article on Neuromonics. It explains what Neuromonics is, what you need to know about it, how well it works and whether it might work for you. Read the rest of this article here.