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- To JeWeL41
I also love my hearing aid, I have the Savia 211 BTE from Phonak. Do you know why I have that one? it was not recommended by the Audis at MEEI where I go in Boston. But I read different testimonials on the Phonak web page and so I came across a testimonial from Buz Aldrin (The Astraunot that walked on the moon). So I wanted to know if my hearing loss would accept that particular one, and the MEEI reply was 'YES'
Paid an arm and a leg for it, but I put it on right after I have my bath in the morning and forget about it until it is bed time. Thanks heaven for 'technology' I do not know what I would do without it.
Take care and be well
Hope01 last decade
Thanks Hope01. Saw maxillo-facial surgeon today and he says I have TMJ and confirmed I have probably had it for years but is certain it does not account for my pain or hearing loss. He agrees I have an enlarged lymph node but thinks it is probably nothing, when I pressed him he agreed to re-look at my MRI and says if the lymph node was not covered on that scan he will do another but really this is down to my ENT!!! I told him I was really concerned that I was constantly passed from person to person and he assured me he will talk to audiologists and ring me when I return from skiing in 2 weeks. I found an organisation linked to the NHS that helps patients to get their records so i have applied for a copy of my MRI scan.PALS will also help research treatments and suggest them to the consultants for you. One last thought - we are really lucky in the UK to have the NHS, my hearing aid cost me nothing and is a very unobtrusive, state of the art digital one. On the downside the waiting for appointments is endless.
JeWeL41 last decade
JeWeL41, I am curious what your hearing test revealed in terms of the amount of your hearing loss. My hearing loss seems to be about 75% - so I suppose it's more in the moderate to severe category. The ENTs that I have seen have said that having a hearing aid for me is pointless - but I always wonder about it as I can hear some noises.

Did you have your MRI done on the NHS? I had my first one done privately and they let me keep scan and I have copies of the reports. I had the second MRI done through the NHS and they have kept the scan. Agree with you on the endless waiting to see specialists. I'm on a waiting to see a specialist in MAY!!
mhoyuk last decade
Mhoyuk, my latest hearing test showed a loss of 30dB at low frequencies gradually decreasing to 60dB at high frequencies giving a mean loss of 38dB.My audiologist also said it may not help but we are all individuals and noone can know the complexities of our hearing as well as we can. Surely you have nothing to lose by being allowed to try a hearing aid? My MRI was on NHS. Were either of your MRIs enhanced with gadolinium?
JeWeL41 last decade
Hi all. I wanted to respond about the BAHA. I saw a few people were talking about it last week. I experienced SSHL in October 2005. I saw an audioneurologist who was itching to give me a BAHA but I passed on it. Since then, there have been two Bone conductor hearing aides come out on the market and neither require surgery. A BAHA may be a great fit for some people but it is worth checking out the alternatives. Also, there is a bone conductor hearing aid that is portable. Not that you would want that, considering it looks like a walkman from the 80s. But, you can try it out to see if the results are worth having a bolt inserted in your skull. The audio-neurologist loaned it to me for the day and I wore it to a restraunt. It was ok. Then, I got in my car and listened to my favorite music IN STEREO. That was awesome!! My regular ENT offered for me to borrow one, too. So, I think it wouldn't be a big deal to ask.

Ok, back to the alternatives. Last year a company came out with a bone conductive set of aides. You wear them on both ears and it sends the signal over. Now, a different company came out with one. Only one! You wear on the deaf ear. It has a computer chip in the b.t.e. part. supposablely you can benefit in more ways than just a waitress asking your order on the 'wrong side'. The computer chip can be programmed to quite sounds that bug you as well as fix directional hearing issues. And, I was told it might help with tinnitus. I got fitted for one in December but it hasn't come in yet. I'll let you know if it works. The website is transear. com.
the video testimony of the guy bowling is pretty encouraging.

Take care, Julie
juliedel last decade
JeWeL41, I did have gadolinium at my first MRI and nothing showed up that was related to the hearing loss. I didn't have it on the second one (which was done on the NHS). As for my hearing loss, on my recent hearing test it was at 70dB on the lower frequency and 85dB on the higher.

I had bought this spy gadget thing for my son which basically picks up sound from another room and I used it in my 'bad' ear and I could hear noises - that's why I thought maybe a hearing aid might help. I'm going back to the States in April and might look into the transear mentioned by juliedel. Anything is worth a shot. In the meantime, I'm still waiting to see if I can get in to see the ENT specialist in London sooner than May.
mhoyuk last decade
I met with my ENT again yesterday and had my third steroid shot in my ear. So far, no change....it's pretty much a shot in hell anymore but I decided to get it anyways, just in case. This sunday is the faith healer at my church---again, I figure, it's worth a shot!!

More realistically, though, this isn't going to change for me, so I talked with my ENT more extensively at the meeting yesterday about the BAHA system. it's a LOT smaller than I thought, which is encouraging, and she said that if there were advancements later on and some surgery was created to reverse this, I could quit the BAHA system and/or have the post removed from the bone, so that was good news. What encouraged me the most, though, was that she had me try a testband to get a rough feel for what it can do....and with my good ear plugged and the ENT behind me whispering (really softly), I could understand everything she said! It wasn't the same exactly as hearing with a normal ear with perfect hearing, but I could pick up sound on that side---and not just that, but words. With no hearing aide out to help (I am still totally deaf in the bad ear--nothing has come back functionally), I have decided, I think to move forward with this---at least have my insurance talk to their office and get the process started to get it paid for.

By the way, I have succeeded in freaking out my new insurance, that's for sure---got a letter saying they were going to contact my previous doctors to check that this stuff isn't a 'previously existing condition' from before December. So, that ought to be fun to deal with...

I'm open to thoughts, ideas, suggestions...that's for sure.

PS--the Lipo-Flavinoid seems to really help with the tinnitus! I noticed one day when I didn't take it that the tinnitus was significantly louder/more noticable. As long as I take one three times a day, it really seems to be quieter and less problematic.
ulricha1 last decade
Ulricha1 - I am so sorry to hear that the shots have not helped you so far. But at least you got them and do no have to think 'what if I had gotten the shots?'.
I was not a candidate for the Baha. But all I read about it seems quite positive. Also, I believe I mentioned it on this forum there are some great testimonials regarding that system on the Internet.
The hearing loss in what is now my good ear is too great for that system they told me.
Tonight, the Tinnitus in the deaf ear, is again like standing next to Niagara Falls, it is funny I just told a friend of mine yesterday at lunch, that I can live with the low key Tinnitus in the deaf ear. But today it is as bad as the day of the onset, what is causing that? did not have tea, coffee or wine...or a very salty meal.
I will try what you indicated in your post, because I was taking Gingo Biloba (spelling?) for a while and that did not help me.
To all be safe and be well
Hope01 last decade
Oh Boy, it looks like a killed the board again LOL.........
Not a single post since I posted last on Friday 2/16/07
Hope01 last decade
hope and all... just checking in.

SO far so good. no more tipsy or if I do get it, its only once in a while, Ofcourse I always forget everything and I wonder if I didnt have a problem with that before. my left ear which was the ear that was affected is still fine but my right ear still rings, sometimes its louder then others. sometimes I hardly hear it. it seems I'm doing ok but no more cruises for awhile. now I'm scard to death since that episode form the last cruise. infact our spring break we are going to keys instead of cruise. ... I'm seem to be doing ok but scared to death of messing up again... also I noticed that lately I cant stand thongs being a little bit louder then i used too. I actually went to a wine bar that played live jazz music and it didnt seem to bother me... I could have went to the daytona 500 but I was scared the noise my be a bit much for me... went off the lunesta and i dont take valium anymore and since my cholestral is now 127 theres no point in taking the lipitor so i am almost drug free. at night it is hard to sleep though. my body starts to crave a little something extra to knock me out..... its almost impossible to sleep without something. once in a while I will take the melatonin or the lunesta but for the most part i have kicked it all and decided to have just some wine or a small drink to slow me down... im naturally hyper so i go slow down to the point to where im really sleepy or i cant go to bed. to much energy i guess.


make sure you took or take the oral steroids with those ear shots. they do not both do the samething. each one attacks a different type of swelling so dont give up. i hear sometimes the shots take a while and the oral prednisone helps too. also you are correct about the ringing in your ears. Lipo-Flavinoids will help. its all about keeping flow, oxygen and nutrients going to those ears.... cafeinne, lack of exercise, sugar and alchol will also affect your ringing. it is proven by doctors that the higher the sugar levels in your blood to your ears the more the ring. these following things will all help allot.

1. take the Lipo-Flavinoid s
2. exercise
3. no caffiene
4. no smoking
5. no drinking.
6. no loud noises.

these are sacrifices but they are proven and documented to help. also accupuncture helps with that too.

P.S. There is a new company right hear in daytona that claims they can now get rid fo the ring by doing laser surgery to your ears. I guess they can shoot lasers up there now but i'm not trying that mess tell i think its out of control. so far so good for meso I will wait. miss all you guys. miss you hope. I hope your well and I do think about you guys all the time...

P.S.S. I'm getting babtized for the finally for the first time on mrch 4th so its all atleast made me closer to god and my wife if anything.

does being baptized mean I cant watch anymore gangster movies... I hope not. i love bad guy movies like the godfather. LOLOL
nitrams2000 last decade
Nitrams2000 - Seems that you killed the forum this time
In any case I wish you well and all the best to you and your family
All the best also to all who post here from time to time
Hope01 last decade
Hi all - finally went back to teaching today after 3 months, did the morning only but it was OK. The kids were on their best behaviour as they had missed me but that won't last. Had my hearing aid turned up and did get a bit of ear ache when I had to shout!! Am seeing new ENT on Thursday and am also having an Ultrasound and possible biopsy of the lump in my neck behind/below my ear. Headaches lessening since I have begun chiropractic treatment on my neck so I am starting to feel that I may be getting my life back. Best wishes to all, lets keep the forum going - we all know that it has been a Godsend. X
JeWeL41 last decade
Just wondering if any of you have heard of the hearing aid from Sebotek. I've scheduled an appointment to see someone in the US about a hearing aid from Transear. When I questioned them about Transear she also mentioned a hearing aid by Sebotek. It will be interesting to see if either of them work.
mhoyuk last decade
To mhoyuk - I have heard of Sebotek. As a matter of fact on another forum I believe it was yesterday somebody with a user name of 'Hearforlife' told that forum in a post that she really likes them.
The forum is called 'hard of hearing concerns' there is a lot of biggering on that forum, but also a lot of good information.
Check it out
Good luck to you.
P.S. I have the Savia 211 from Phonak and the above mentioned person prefers Sebotek over the Micropower from Phonak
Hope01 last decade
ok here is a long message that I put on the hearing loss yahoo group. I'm also posting it here because it thought it was helpfull. but I warn it is long. :)

I have recently done a poll. I asked 25 people to go in a room where there is total silence and everything off... put your fingers in your ears and listen.... listen to see if there is a ring. Most all people said in silence they could hear a ring and the remaining few that did not hear a ring said they finally did hear a ring when they put their fingers in their ears in silence but most admitted to hearing the ring in silence even before they put their fingers in their ears.I only had 2 people said they hear no ring at all and oddly enough , one of those two people admitted to being practically deaf from listening to very loud music when he was younger and he works as a tile layer. he works very loud tile cutting saws.

My reasoning for doing this is simple. No one hears..... everyone feels. What we think is noises are nothing more then vibrations being transmitted to the ears and for some odd reason 99% of us some how getting a vibration even in silence. so when there is nothing to send to the brain the hairs that send the vibrations anyway... they are used to working that they simply can not stop so when no other noise is around to deliver then it delivers this silent vibration known as tinnitus.

I do believe my theory to be correct and I can prove it... 'DO THIS' Go to your stereo or surround sound system.. put the mode on CD but do not put in any CD. leave it empty and turn the volume up all the way to the top. you will hear a murmuring loud noise from your speakers that do not deliver any sound but is ready to blast the second you put in a cd.. the reason the speaker does this is because it is still trying to vibrates woofers even thought there is no noise..... exactly why we have tinnitus..

In conclusion. Almost everyone has Tinnitus and when you loose your hearing, then the inner ear hairs cannot pick up any other vibrations it concentrates on the one thing it can do which is focus on sending something else instead, which is tinnitus....

You always heard Tinnitus. everyone always did but you never noticed it... the ones that say they don't hear tinnitus just have noticed it yet but they do hear it. It's always been there but when you loose hearing in that ear then there is nothing more to focus on but the tinnitus so it becomes that much louder.


The second theory I have is a little crazy but probably true. The better you can hear now means the louder the tinnitus will be when you loose your hearing... so those people born with crappy hearing are noise damaged hearing at a young age have a less likely chance of hearing a loud tinnitus. 'My reason to believe this is simple' If the damage happened to you at a young age or you were born with bad ears then your body has had along chance to adapt so you wont hear that much tinnitus because you are used to silence. the more your ears are used to silence the better you are.


To those people that have heard a ringing that last a few seconds and then the ringing suddenly stops and leaves... well I'm sure you heard the old saying 'Your ears must have been ringing because we were just talking about you.' What they are really referring to is a mishap. the reason for your ears ringing is your inner ears messed up for a brief second.. sorta like a sneeze.. when you sneeze your whole body stops everything to do it... for some odd reason the inner ears almost stop for a second and the muscles stop delivering vibrations like a small cramp in your leg muscles..

What does this mean to people that have this... probably not allot but there is two main reasons why you cant hear from the inner ears. .. either your inner hair cells of the cochlea are damaged or your muscles delivering the noises to your brain from your inner ear are not working properly, so if you hear a ring out of no where that comes and goes frequently then it might be a warning sign of times to come. The chance of you getting SSNHL at some time in your life is much more likely. This would explain why most candidates that get SSNHL are a little older..When I went to get my MRI done, I was talking to one of the nurses and she said my age was very young to have this. I'm 37 and she said most people come in to get a MRI due to hearing loss are usually much older and the nurses seem to just excuse it as part of old age.

Good news is if you get this ring and it goes away then there are some good things you can do to stop it from being permanent and help your hearing at the same time. For you its not to late... 'You just saw the ghost of Christmas yet to come and you had a chance to peak into the future of what's instore for your ears. You can help yourself and stop it before it gets worse. remember the key to good hearing is 3 main things.

1. Blood flow. You have to get good blood flow to you inner ears.

2. Vitamins. Your inner hairs must have them and a high amount too.

3. Oxygen. Very important that your blood cells are highly oxygenated to complete the first 2 tasks.

For you now is the time. Hear are some things you can do that certainly will help and wont hurt.

1. Check cholesterol. its all about blood flow. The higher the cholesterol the worse the blood flow. very important.

2. Diet with proper diet and you can assure the best sources of vitamins and eliminate fatty foods that stop good blood flow.

3. Exercise. The more you exercise the more your blood is pumping oxygen threw your body and to your inner ears.

4. lipo-Flavinoid Vitamins and ester C. this is a special vitamin that's just like the others but its specially designed to not break down right away. its designed to deliver vitamins straight to your blood system that go straight your head area, inner muscles and inner ears.

5. Stop Smoking. Smoking stops the delivering of oxygen to your upper area that's why smoking is so bad for you. not only do you kills your lungs you also kill your blood flow of oxygen threw your body. Smoking has also been proven to deplete vitamin c in your body. The smoke actually sucks it up like a sponge.

6. Stress. Eliminate stress to your life as much as possible. Stress and depression cause many vascular and vestibular problems to your muscles and your inner ear muscles. that's why when you get stressed out or you don't get enough sleep you feel stiff neck... that's your inner muscles of your neck freaking out from stress. consider a muscle relaxer like primrose oil.
Doing any of things wont hurt and will and I can almost guarantee it will help.

7. Sleep Get your 8 hours, give your body a chance to rest up for the daily war it must fight called life. If you were a soldier, would you go into battle unprepared? then don't ask your body to do it. get your sleep people!!

8. Primrose oil Finally, This is a great way to help your body eliminate cramping, arthritis and swelling of muscles. if your muscles around your ears are swollen then your inner ear cant get blood flow, oxygen and nutrients. This is the second highest reason why people loose their hearing and their inner hairs die. That's why when you loose your hearing they put you on prednisone. ... it shrinks things, that's why it works on shrinking swelling to the muscles around your cochlea.

to everyone, I would suggest doing these things. You will help yourself and it certainly wont hurt..It does take dedication and discipline to do these things but you must ask yourself this one question. What's your hearing worth to you????? To me the answer was simple. I would do anything.

Sorry to deliver this long book but hopefully it will help. I have helped get hearing back for 2 or 3 people and I get to take that to bed with me at night, it feels great. :) JM
nitrams2000 last decade
To Nitrams2000 - Thank you so much for sharing your research with the forum.
I agree on all points except the fact that more older people get these onsets of SSNHL. As a matter of fact, I have so far only met younger people that got this onset of SSNHL. I was also told at that famous clinic in Boston that it happens more to people between 30 and 50. It is not a 'old age' affliction.
Older people suffer much more from progressive HL over time.
Again though thanks so much for all your research you have some great stuff in your article.
Thanks again, take care and be well Nitrams2000
P.S. Nitrams2000 maybe you should write a book; between your own experience with SSNHL and all the research you do and have already done I believe you would come up with enough material for a book.
Got to run now
Hope01 last decade
i agree with hop. The MRI nurse said that it was mostly older people but you have to remember that i'm in a area of florida where it is retirement heaven and it a ton of retired people here. so imagine if you do the math, the MRI probably sees 80% ederly people. So that might exlain it. Also I have met people of all ages that have this. your number of ages 30 to 50 wouuld seem more correct.
nitrams2000 last decade
I was 41 when this happened last November!
JeWeL41 last decade
I'm proof it can happen to very healthy, young people---I'm 23 and I've never been seriously sick before in my life (except a 3 week stint of mono once).

I've tried or am trying most of what you recommended, nitrams---lipo-flavinoid vitamins twice a day, a multivitamin once a day, avoiding loud noises without earplugs, tried the shots after trying the pills.... now I'm giving it another few weeks before I meet with the surgeon to discuss the baha implant.....what gives me hope about it is I've learned the surgery is reversable in case some surgery is discovered down the road that can fix this without an external implant.

I have to admit, I am still dealing with the fear that this may make me self conscious (though I already am, at least in noisy places where I have a hard time hearing). I'll be young, single, and trying to date with this strange thing I have to wear all the time. It's got to be better than always asking 'What?' every 2 minutes, but it's still something to adjust to.

Has anyone found that friends don't really understand what you're going through? I talk to people outside of my family (who are extremely supportive) about the likelihood of choosing this baha implant surgery, and what I hear from each person is, 'Take your time and see if you might be able to live with it.' Of course, we can learn to live with this---it's just that if there's something that might make it better, why should we just 'live with it'? Just a thought I've been wrestling with lately....

glad to hear that you're doing so well, nitrams...and each of the rest of you, as well.
ulricha1 last decade
Ulricha1 - I really hoped the shots would work for you, maybe they still will? In answer to your question, emphatically YES, our 'condition' is invisible and no one could understand unless it happened to them which is why this forum is great.I saw a new ENT yesterday and am now being referred to The hospital in London that I asked my GP to refer me to 2 months ago! ENT was very nice but said 'you will probably never know what caused it and most people recover spontaneously as no treatments are known to be effective', I tried to tell him that from the point of view of the patient all treatments should be given but hey ho!
JeWeL41 last decade
JeWeL41, let me know how your appt goes with the doctor in London. I finally got an earlier appt to see the ENT specialist. Will see him the week before I go to the States, and I also am seeing somebody over there about hearing aids the week after that.

Ulricha1, I find that always have to remind people about my loss of hearing which can be frustrating at times. My family are supportive about whatever I want to do - but I think it's difficult for them to truly understand as I look like everything is fine. I don't know if any hearing aids will help you. One of the ENT specialists I have seen is rather negative about my outcome and won't even talk to me about hearing aids, surgery, etc. Yet another one I have seen is more open to surgery and more willing to experiment.

I find noisy places very frustrating and don't look forward to being in a busy place. Even having a dinner party is a bit stressful as I have a hard time listening to conversations. How long have you lost your hearing ulricha1?
mhoyuk last decade
I've been away from this board for a while since I'm concentrating on a fibromyalgia forum group.

The reason I first came to this discussion group was because of my 43 yr old daughter who lost her hearing. In recent months it has come down that my daughter has an addiction and it was to prescription drugs, specifically Vicodin, which I believe was a major cause for her hearing loss. She is in her 5th month of rehab now. It's been quite a long hard struggle but she's FINALLY where she needs to be to recover from drug addiction.

I found a Life Extension Foundation article dated 2/19/07 today which starts out:

'Stefan Heller's dream is to some day find a cure for deafness.

As a leader in stem cell-based research on the inner ear at the Stanford Univ. School of Medicine, he's got a step-by-step plan for making this dream a reality.

It may take another decade or so, but if anyone can do it, he's the one to place your bets on.'

To read more about Stefan Heller's work, you may want to google more on this info.

Best wishes to everyone. joyce martino
joyce martino last decade
I lost my hearing about 2 1/2 months ago (the weekend before Christmas). I keep hoping those shots work, too---and I've heard of rare cases where the steroids seem to kick in weeks or months later, so I haven't forgotten that possibility, for sure---but at the same time I am trying to learn to accept that I am now partly deaf. I feel like if I keep thinking this will just go away, I can't deal with this change in my life, so I am trying to accept that reality.

The tinnitus has been worse the last few days, but I think it's because I had to take the last big test for me to get my teaching licensure....not sure if I passed it...so that increased stress has been making the ringing louder, I think.

My ENT broke his leg, so I have to wait a month to meet with him about the potential BAHA surgery, so we will see.
ulricha1 last decade
Hello all - I am not home this week - but I have access to a PC. Must tell you that in the last few days I heard about 5 people with onsets of SSNHL. None of them are over 45 years of age. So yes Nitrams these nurses in Florida obviously, as you stated, see mostly elderly people, but this affliction seems to happen more and more to the young and seemingly healthy.
This is terrible.
Ulricha1, I wish you luck. If you are a Baha candidate I am glad for you, I was told that I am not, do not even know why none of the doctors gave me a reason why not?.....
Wish you and the others all the best
Hope01 last decade
Hi all - it's gone a bit quiet n the forum hasn't it? I've been back at work for nearly three weeks and am VERY tired. The students have been good but the novelty is wearing off so some are playing up again and when I have to raise my voice - it hurts! I had a full hearing test again yesterday and no change since 3rd January so i may be stable with average 38dB loss. I have got used to the hearing aid and it really helps to mask the dreadful tinnitus - things sound more normal every day which is great. Hope everyone is OK.
JeWeL41 last decade
Hi JeWeL41
Yes it has gone a bit quiet lately. So, good to hear your news.
I had profound loss last Sept and have about 55% back on various levels. I go back this month to try out a hearing aid so your post is very encouraging. Everyone is telling me I dont need one but then when we get in crowded situations they have to repeat themselves or talk on my good side so I'm going for the free trial and see how I go. Its amazing how you get used to the loss and our good ears adjust.
Hope eveyone else is dong OK too.
Mertie last decade

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Information given in this forum is given by way of exchange of views only, and those views are not necessarily those of ABC Homeopathy. It is not to be treated as a medical diagnosis or prescription, and should not be used as a substitute for a consultation with a qualified homeopath or physician. It is possible that advice given here may be dangerous, and you should make your own checks that it is safe. If symptoms persist, seek professional medical attention. Bear in mind that even minor symptoms can be a sign of a more serious underlying condition, and a timely diagnosis by your doctor could save your life.