Sudden Hearing loss _{Page 42 of 105}

Hope01

Hi,Bonjour,
Hope01, The fact that he called you up to apologize is not enough to attenuate my anger. You've lost hearing and you now have to wear a 'prothèse'. A year ago those injections existed; How come he did not know about it ? These guys have to be up to date in their practice. I'm here in Québec and they know about it. I'm so sorry for you and all those folks that have lost their hearing ability thanks to those $$$$$$$ doctors. It really breaks my heart. Yes this guy called you up to say he's sorry, that's the very least...seems to me you're the last step to his stairway to glorytvlookatme. Are you ever strong! I have a total recovery grâce à vous.
(MERCI BEAUCOUP)10000000000000
Al

deaf musician,
Thank you so very much for your kinds thoughts.
Do you know what worries me now? itis the fact that I sent an email to the fellow poster Nitrams2000 and there is no reply. I just hope that he and this family are OK. I know that they are in Florida, just hope it is not in the area where they had this incredible tornado.
Je vous remercie pour votre gentillesse envers moi.
Merci et bon weekend.
I am so very glad that you got your hearing back.
God bless you and your little girl.

Hope and friends

I got your message, Thank god I was in Port orange because many cities close to us got really creamed... Deland is a mess and so are parts of daytona.... We got lucky and I am fine... After speaking with my family doctor and going over my xrays , he agreed that even though he is not a ENT or in nuerotology that something like this would be relativly easy to fix if there wasnt so much red tape and that if there were funds for this... he belives that hair tansplants could be done to inflammed areas to save these areas and that steroids are a good temporary answer. he is right. we are right..... the steroids work and if a doctor tells you they dont then he is just lying. I got lucky but I wish to god it wasnt luck. i wish that one day it would be just a simple operation. .. it shouldnt be luck. it should be part of a routine. it should be a whole order of things to do in based on how long you had it... i was to just as mad with the news atricle... I feel we know more then 90% of these idiots. god bless you guys....

Well, my hearing test went well. My ENT said that I got my hearing back but that I would have some 'quality' issues for some time until Mother Nature fixes it. In essence, I can hear normally except for fairly high frequencies which he said does not interfere with 'normal' hearing. Time, he said, would repair the 'broken speaker' effect that I currently have. He also said that my discomfort with background noise would subside over time as well. In addition, he suggested that I do nothing else to try and fix my ear. Finally, he told me that my recurrence chances are no greater than for anyone else whether they have had this problem before or not. (Of course, when he told me this last bit I couldn't help but think of seattlestan).

I am trying to decide whether or not to pursue the shots. I have an appointment with an otologist in two days. Do you guys think that I am in the clear, or would you go see the specialist? I am not all that surprised that I can hear, but I should stress that this hearing is not near the quality as my 'good' ear.

Also, I have read that the rap star Foxy Brown had bilateral SSHL and underwent some kind of surgery that restored 100% of her hearing after almost a year from onset. Does anyone know what kind of surgery this was? Surely someone on here has researched this. If true, this sounds like the answer for several on this board.

I would appreciate any of your comments. I feel extremely lucky, but I don't want to put this problem to bed prematurely. However, I don't want to get the shots if this doctor is right and my ear will continue to heal on its own.

Finally, I'll ask again, where are you all getting the 1 in 3 recurrence rate information from? As I mentioned, this is much different from what my ENT told me today.

Good luck to everyone!

deaftoo - Good morning - If I were you, I believe I would get the shots, this especially if you are not on a lot of other meds. Of course I am not a doctor, but after reading a lot what is said on this forum I would get the shots.
Foxy Brown had a cochlear implant done. While she can hear now it is by no means a restauration of her normal hearing. There is a controversial talk show host that had the same procedure done:Rush Limbaugh (spelling?)
I got to run now
Have a good day all

Hi there deaftoo,
I wouldnt get the shots-
it sounds like your hearing
is pretty much back to normal, you are lucky.
the shots puncture your eardrum and theres a chance of infection, and you're putting prednisone right into
the inner ear. i wouldnt do it in your case.
i wouldnt mess with something thats working.

deaftoo

As reported in other postings from me, I have had 2 SSNHL episodes (8/05 and 10/06). Both times oral Prednisone within 2 weeks was instigated. In the 2nd episode, 80% hearing return with oral after about 8-10 days, but had echoing in my ear with high frequency sounds. Had the shot (no pain)and the echoing went away and the remaining 20% loss came back. I can't tell you what to do, only report my experience.

Yesterday I had a follow up with my otologist. It appears that in the last 2 months the hearing in my left ear has improved. In talking to him about mitigating future occurrences he noted that good diet, a healthy immune system were at the top of the list. I talked to him about my frequent need to open my mouth wide to 'open' my Eustachian tube to hear better and he said that that often is the case when damage has occurred (especially twice for me) and that it was natural and should dissipate over time. He did not feel that cranial-sacral therapy would be helpful (although he said it has worked for a few), but it might be worth doing with respect to my constant tinnitus. I mentioned that I massage around my ear a lot and he encouraged me to continue to keep that area 'loose'. We talked about herbs, apple cider vinegar (ACV) and other naturopathic-oriented approaches. I have added astralagus and grape seed extract to my supplement box, drink ACV daily, joined a health club (haven't gone for the last month however which won't help me much if I continue staying away). I have a tendency to trust both my ENT and this otologist. They are well read, understand the importance of Prednisone, are open to discussion, etc. even though they, like all others, really can't tell me what causes it and absolutely how to prevent it.

Good luck.

Deaftoo,
I had alook on the Shea clinic website, and it gives the statistics of the recovery rate of the shots and the adverse ones. I think it is such an individual thing that you need weigh up the pros and cons, especially now you have your hearing back.

I found the web site Interesting, it sghts 3 major causes of what we have, but no way of finding out which one has affected us as individuals.
Intersting statistics, 1 in 10,000 will get this every year in one ear and 1 in 100 may get a reoccurance in the other ear. A bit depressing really, although if we knew which one caused ours individually we would be able to prevent it.
So best to try and treat ourselves on all levels.

Congratulations on getting your hearing back, its so good to hear of the recoveries.
Marion.

PS sorry about spelling wrote it in a rush

Hi everyone,

I am sorry for posting so frequently; however, I guess all of you have been through the same thing and know how scary it is and how it dominates your thoughts for a period of time. Thanks for listening and thanks for your comments. As you know, it is frustrating to be suffering with complete deafness in an ear and try to talk about it with someone who really can't understand just how traumatic is is to you. I feel so extremely sorry for those of you who have lost your hearing, especially if you are dealing with that awful ringing in your ear. Fortunately, my ringing is virtually gone--I am only dealing with the constant (and I mean CONSTANT) pressure in my ears and a loss of 'quality' in my bad ear.

I have decided to go to the specialist in the morning primarily to pursue what has caused this to happen. If the doctor seems knowledgable and confident that the shots will help, I might go for it; however, I am loathe to mess with the healing that I have going for me right now.

I went to my ENT's office today and got my medical records. My recovery, according to my hearing tests at least, appears virtually complete. I have a 30db loss at the highest frequency but other than that both ears are the same. Speech discrimination scores are at 100% in both ears. FYI, when my hearing went out on me in my left ear I had about a 60db loss at all frequencies so I guess I technically had 'severe' rather than 'profound' initial loss.

Thanks everyone for your support and I will post what the doctor tells me as soon as I get the chance.

So I've gotten my second shot of steroids in my ear, but still no luck. Hearing test on Monday showed no improvement after the first shot. I keep hoping, but it's not looking promising...

My ENT gave me a brochure for the BAHA implant, what she recommended I consider if this or the last shot next week don't work. I'm struggling with this---it looks like it's definitely better than what I am dealing with now (when someone speaks on my right side and I am not looking at them, I have no idea they're talking to me). I just am still struggling with the idea of getting an implant and attaching the sensor pack to my head....

Does anyone here have a BAHA or know anyone who does? Is it as small and unnoticable as the brochure claims? How well has it worked? I'd love some feedback from someone who's got this before I decide whether this is what I want to do if these shots are unsuccessful.

To Ulricha1
Just got home and checked my email and several forums.
I hope and pray for you that the last shot will do the trick for you.
After I got the onset of SSNHL and the oral Prednisone did not work and I was not able to get the shots, I started to look around on the Internet and of course stumbled on the Baha System web page.
If you look good at that web page there is a link where you actually see some people that posted their results with the Baha and their testimonials for that system. I recall having asked a person called Diane (can't recall the last name) via email a few questions and she did get back to me with all kinds of info.
Unfortunately when I asked the Audi at MEEI, as well as the doctor there about the Baha, I was told that I was not a candidate for the Baha System, this because I still have 100% speech discrimination on the left side, where I wear now a hearing aid (the Savia 211 BTE).
Good luck to you and again I hope that the last shot will bring back your hearing in that ear
Take care

ulricha1
I have an ENT doc. here in Nanaimo that told me that hearing aides would not help me.
I went to a very good ENT in Victoria that does the baha implants. He is going to do more assessment tests at the end of Mar. He will then determine whether I am a candidate for the baha implant. I did go to an audiologist and he did some tests on me with a simulated bone conduction hearing aide and I did quite well so I am hopeful. The Doc in Victoria is Dr. Noel and he does the surgery for bahas. He is well thought of by the docs. that I work with and is well known with quite a reputation so I feel that I am in good hands. If I had just listened to my local ENT I wouldn't have found out about this option. We sure do have to be pro-active in our care!!!!
I too cannot tell where sound comes from and if someone is standing off to my left (bad ear side) I either do not hear them, or can't tell where the sound is coming from.

I got back from my visit to the specialist. To make a long story short, he said it was too late to administer any more oral steroids or steroid injections at this point (it's been a month). He probably would have suggested to go for it if I hadn't gotten almost all of my hearing back.

He did say that my 6 day course of steroids likely did absolutely no good. He said I needed much more, given that research has shown that it takes a very significant amount of steroids to 'penetrate the inner ear and make any difference.'

I brought my MRI images for him to review and he pointed out an abnormal growth that was right at the point where the ear meets the brain. This was not noted by my ENT, nor was it mentioned in the pathology report; however, this doctor thought that it was awfully coincidental that I had this abnormal mass in this location and only on the side of my bad ear. He felt that this was likely the cause of my hearing loss. He scheduled another MRI in 6 months so that we could track this growth or whatever it is. He did say that it would be unusual for cancer to take root in that particular spot. By the way, I did take a weird hearing test that tests the hair cells and found that they were damaged equally on both sides.

Bottom line: You need a massive dose of steroids as quickly as possible. By the time it gets a month out (as in my case), he felt that the risks of massive doses of steroids outweighed the the gain. Again, I think he felt this way because I have gotten the majority of my hearing back.

By the way, I asked him if the hearing I have gained could go way and he said, 'sure.' After that is when he told me to follow him and take a look at my MRI. I forgot all the other questions that I had when we started talking growths on my brain...!!

Good luck everyone!!!

deaftoo

I have been reading your some of your story and i am greatfulll to see your success, I am no doctor but I have been through alot. I can tell you that I have successfully talked to now 6 people that have retained thier hearing fully. 3 of which I feel I have helped in some way or another. the fact that he told you that 30 days out is to late us just plain nuts. I know people that had it longer and got thier hearing back. you do not need massice amount of steroids. you need 60mg a day for 12 days and then taper down. in your case i'm almost sure the steroids helped you in some way... do to the MRI you exlained. also the injections can not hurt you at all. the injections they do to the ear are what is called topical and far less threatening to you then the pills. ,,, a topical means it goes almost directly to the correct needed area and that it is less likely to go into your system and blood stream. taking the pills for 2 weeks is also not along time... it would by my opinion to seek a second opinion. if it was me i would do both at the same time

There is a study being conducted right now as we speak from 7 of the top nueroligist and ENT's in the USA at suddendeafness.org, I have spoken with 3 of these doctors and they have heard of people getting thier hearing back as far as 4 months out,,, granted it is rare but 1 month certainly would fall in the guidelines at making attempts for a full recovery. it seems to me that your doctor is saying ' hey you got some hearing back and be happy with that. I hate doctors that use the it could be far worse theory. especially when thier is a chance for a recovery.

If it was me I would do both steroids orally in prednisone and also the ear injections. in your case what your trying to do is shrink inflammed and damaged hair areas, also i would take several herbs or drugs that increase circulation. trying to increase circulation while attempting to shrink inflammed areas is the goal. if you get circulation to these areas then you get much needed oxygen and nutrients they need. also by getting the nutriends and blood flow to these areas you can attempt to stop any further damage. your specialist is corrrect in saying that it could reoccure or you could have further loss because the study shows that 1 in 3 cases have a reoccurance.

I have taken steroids on three occasions and did 3 injections to one ear and 2 to the other ear... i ahve full recovery in my affected ear. I do have the slightest ring in my uneffacted ear that is sort of uneplainable but i can only hear the ring in silence or in certain areas. sometimes my ring goes up or down but it seems to be controlled by my diet and how i treat my self I. E. stress, sleep, exercise.

do not give up. you have a very good chance for full recovery. 1 month is not that long. also consider looking into and testing for a problem called 'AIED: Attoimmune inner ear disease. the reason why I bring this is up is because 2 of the doctors from the study mention that when both ears are affected then there is a 80% of these cases have shown to be some sort of 'aied'. I thoguht that was what I had but they said I tested negative for this.

I have done the following to get back my hearing.

1. prednisone 60mg a day for 12 days.

2. injections of decadrom to the ears.

3. vitamins that get direct to your body. lipoflavin vits, and Isotonix, tons vite E ad a huge list of others plus i Have had success with primrose oil.

4. Accupuncture to increase blood flow and to help with lowering inflamation.

5. took a strong antibiotic.

did any of these help me... ? who knows but I did get my hearing back..

I have had some small reoccurances but not really with any hearing loss. my few reoccurances have been with a slight case of dizzyness that drove me nuts after getting off a cruise that lastest almost 3 weeks but I fixed that by taking valium for a short bit... valium resets you in hibitors of your balance and it really helped my plus it helped to deal with the stess of all this.

now i am off the valiums and dizzyness and swaying is about 99% gone.. once in a while it will hit me where it feels weird like im dizzy or feel like im stoned but it only last a second and its gone. samething with the ringing... once in a while i get a ring but its gone the next day or a few hours later.

also consider a lifestyle change... your ears are more affectd now by your surroundings... no loud noises, drop the concerts and parties. keep drinking to a minimal. drinking turns to sugar in your body and if you read up on your fluids in your inner ear, you will find out that caffiene and sugar affects the levels of fluid in your ears. the more you stay on top of these things the better your chances are.. these are all advices givin to me from some of the top doctors and Mr. Atkins office and the MAyo clinic... the Mayo clinic is the best place for something like this. they specialize in these cases. I do wish the best and can only given you advice im not a doctor but why settle for partial recovery when you can get it all and you most certainly have the chance of doing that. these things that i mentined cant hurt you and can only help so I would try them but thats me.. its up to you. my prayers are with you... if you need to call me you cann see my numbers on my past posts.

deaftoo

you asked about the 1 in 3 reoccrance rate.. somw ENt's have menioned to me that once you get this if you get your hearing back that you wont loose your hearing again or its rare... this is not the case at all.. the main doctors that do injection florida are Dr. atkins in celebration health and the mayo clinic. plus i ahve spoken to alot of the doctors from the study. they say 1 in 3 get a reoccarnace of some osrt. they say the numbers work out to be a 30% chance of getting it back which is sort of small but there is always a chance it ill happen again. i know 3 people on this board that have had it happen to them again. Settelstan, myself and one other.

Hope01

thanks for your kind words and thoughts. you are my true internet mommy. wouldnt know what to do with you. :)

I may light the board once in a while but you are the back bone. I hope your family knows how lucky they truly are too have you..

Hi all - I have still had no luck getting the shots and time is running out. But, on a positive note, I went for my hearing aid today and my hearing test showed some recovery - now my loss is mild to moderate, not moderate to severe and the aid is great I feel like i have a bionic ear. Still loads od pain and loud tinnitus thoiugh. Hope to go back to teaching in 2 weeks.

- To Nitrams2000 - Thank you for your good words. My family is great, however they do not really understand total deafness in one ear and at times unbearable Tinnitus.
I believe only those of us who have experienced SSNHL and Tinnitus do understand what we are talking about and that is why a forum such as this one is great. As we can voice our opinions when there is a need to and where we can find a lot of information from posters like you Nitrams2000
and where we can get support
- To JeWeL41 - I am glad to hear that your hearing came back somewhat and that you can return to teaching soon
Good luck to you and all of us.

Hi all, bonjour à tous et toutes,

Nitrams2000,
You are such a good-hearted man for being so supportive, you've helped me a lot and you continue to do so with others. Thank you kindly !

Tonight at 9:25 pm, I'll be having my tomodensitométrie, (scan), I'm scared to death especially after reading deaftoo's post...

Since I've totally recover my hearing and have no more tinnitus;'What may I may I blame this SSNHL occurrence on ?'

I sure know that the one thing that saved me is taking massive prednisone dose (80mg/2 days) 4 days after the onset and then lowering to 65mg/3days, 60mg/2days, and then one day each of the following, 55mg, 45mg, 35mg, 20mg, 10 mg. So I was on prednisone for 12 days. Plus I took an anti-viral 6 days after the onset, Valtrex 500mg/3 times a day for a week.

I owe a lot to everyone here for giving me so much support and good advices. I wonder what this would have been like, back in the dark age of no Internet.

Merci beaucoup, from cold winter in Québec.

Al

Hi to All,
- deaf musician, I hope your T-scan (I guess this is what it was) came out OK. I wish you well
- Nitrams2000 talking about the support of family? two of my three siblings thought that my email to the famous doctor was out of line.
- I still do not have the results from the 'Life Line Screening' could take almost 3 weeks to get the results.
to all - reading and seeing on TV the tragic end of that female Anna Nicole Smith.... if she did not die from an overdose and it was just sudden cardiac arrest, we all can be happy with our 'sudden deafness' even those of us that did not recover. At least we are still here.
Every so often we hear about a young person being taken so suddenly. In her case of course, there must have been a lot of stress living such a bizarre life. However, many of us living 'normal' lives do go through a lot of abnormal stress and therefore screening like the 'Life Line Screening' could save a life. Check it out on the Internet.
Have a nice weekend all

Hi Deaf Musician,
Its now 9:30 and you should
be in for your test.
Just wanted to let you know
i'm thinking of you and wishing you well...

Hope01,
It took me longer to reach the hospital than the test itself, I do not know about the results yet, they told me I could get a copy on a DVD. Appearing now, starring Al's brain. No kidding. It's hard to fool around when English is not your language...

What?
It feels so funny when I read that somebody somewhere is thinking about me. I appreciate, thank you so much.

I'll let you all know when I see the movie 'MY BRAIN', till' there I'll be writing the soundtrack.

Salut!
Al

deaf musician

thank you for your compliments. :)

dont be worried about your MRI. 90% of the time they find nothing. mine was fine. your probably wil be too. I wouldnt letit bother you at all. 'deaftoo's' case is very sa but I have hope that god will help him and I can telll you his case is very rare. I have only ever talked to 2 people that had something wrong with thier MRI scan... 90% of the time they do not find anything. hang ion there. you always got a frined here in florida. :)

Hi all, don't want to sound like the ultimate pessimist but didn't deaftoo think his MRI was normal before he saw this latest ENT? How many of us have had Gadolinium enhanced scans as recommended by all the literature I have read? In the UK you are not permitted to see your scans and the ENT dtermines who looks at them, it may be only him. If you want a second opinion you have to go through the whole process of referral and waiting again which is what I am doing now! I am seeing the maxillo-facial surgeon tomorrow re TMJ perhaps he can shed some more light. I LOVE my hearing aid!!!

- 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