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Sudden Hearing loss Page 41 of 105

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you do have several factors that may well have contributed either alone or in combination. It would seem that you certainly had a virus - have you taken an antiviral like aciclovir? it may be too late now but if not, try to get some. You did not have enough oral steroids for long enough so try to get more and DEFINATELY GO FOR THE SHOTS IF YOU CAN see this :-
JeWeL41 last decade
deaftoo - Your ENT while he might be a nice guy sounds just like my first two did.
6 days of Prednison and then nothing more. No that is not true the first one after the first 6 days, gave me BIAXIN-XL (which I later read is ototoxic) and it damaged my left ear.
As I said many times before on this forum, here in the Boston area, they all think that nothing probably helps and that all the 'healings' are spontaneous recoveries.
Please do not go by what any of these ENTS says. Insist on getting the shots.
Of course none of us is a doctor, but we can see the results.
And I have a gut feeling that had I gotten at least 12 days of Prednisone, my hearing would be all back.
This since I got initially back some distorted hearing, but that eventually went away, and I firmely believe it was because of the lack of Prednisone, and of course no shots.
I wish you well
Hope01 last decade
Jewel--I think the link that you sent is broken. Could you please try again?

Hope--thanks for your reply. I had read your story from previous posts. The fact that you regained some hearing and then lost it again after taking a similar amount of steroids as me is what sent me on my quest to obtain more. As I mentioned, both my ENT and GP would not prescribe any further treatments, though my GP did refer me to someone in Memphis, albeit my appointment is almost 3 weeks from now. How long after you regained some of your hearing did you lose it again?

Anyway, I am exploring other options. Should anyone on this forum be well-versed in the doctors who are aggressive in treating this condition (i.e., they give the shots), I would be pleased to know who the closest one is to the Montgomery, AL area.

deaftoo last decade
Deaftoo, I can't get the link to work now either. Try googling 'Stefanie weiss sudden hearing loss'. It is just an interesting article written by her. She had a 'dead' ear and got hearing back with the shots. I've still had no luck getting them - found a Harley St Doctor who would do 3 shots for £2650 (about $5000 I believe) and I can't pay this. Haven't given up yet though.
JeWeL41 last decade
so far, it's been 2 days, and no hearing has returned yet after getting the shot in my ear. I go back next monday for a second shot. I just keep hoping this works!

deaftoo, so sorry to hear you're suffering too. Don't just accept what the ENT said---if I did that, I'd be sitting around for 3 months, twiddling my thumbs, praying for spontaneous recovery. While I'm still praying for that, I'm also getting shots in my ear, thanks to going to a different ENT who is much more informed about SHL. Be persistent--and a little demanding. The office I went to on monday is extremely busy, but I called friday morning (after my first ENT did nothing the day before) and told them it was an emergency and I needed to get in on Monday or Tuesday. With that, they made it happen. Just don't be able to be told you have to wait---and someone will listen. If they won't, chances are, it's probably not an ENT office that you want to go to anyways, if they don't understand the urgency of this.
ulricha1 last decade
- deaftoo - It was about 3 weeks after I had regained some hearing that I lost it again.
But when I have time I will describe on this forum the detailled line of this situation.
- Ulricha1 - If you are in the US, please know that SSNHL is a 'medical emergency' in any ER.
Of course when I saw later on my GP, he told me that he had never even heard of 'sudden deafness' he was totally dumbfounded. By the way so were my two pharmacists...
As said above, I will write up my detailed time line of this onset(s) as there were several ones....same ear of course
Wish you all well
Hope01 last decade
Hope01 - I'm glad to see that you are still giving advice...I don't know if you remember me but I wanted to come and see how everyone was doing I havent had any appointments lately and I'm not sure but I don't think I recovered any hearing but I have an appointment in April. I hope everything is going good for you! Good luck and I just wanted to say thank you for all your advice!
18withSHL last decade
I cannot emphasize enough that oral Prednisone in combination with shots is key!!

The second round of SSNHL for me began with 60 mg./day of oral Prednisone. With 80% recovery after 8 days or so, the shot brought me to 100% recovery. I still have tinnitus (not roaring, but certainly noticeable).

I am mystified that ENTs worldwide do not get it. You have nothing to lose with a full two week run of 60 mg./day of Prednisone. You cannot wait for the 'spontaneous recovery'. There are folks who are on Prednisone for months on end for other maladies. What is their problem with hearing loss that they relegate only 6 days worth???

We all need to take control of our lives. I feel lucky that my ENT understood the issue and promptly put me on Prednisone for 2 weeks, tapering off over the 3rd week. That was the 1st time, in Aug. 2005. So, it has happened to me twice now (the 2nd time in Oct. 2006) and I was advised the 1st time that it probably would not happen again...so I am curious about the statistics mentioned earlier.
seattlestan last decade
Has anybody taken lipoflavinoid for tinnitus?
mhoyuk last decade
OK Here is the time line of my onset or onsets of SSNHL.
I will try to make this a bit shorter than the file which I have in my word documents.
First of all, I must say that after having lost my job as a software QA engineer in 2002 dues to outsourcing, I finally found a job in 2003 in customer service for a company selling medical equipment to pharmacies all over the US. So I had to wear a head phone and I used my right ear for that.
1. Early December 2005, I had a viral upper respiratory infection for which I only got cough medication and MUCINEX.
2. between Christmas and New Year, I took one afternoon a 10 minutes brake from work and when I got back on the phone, I could not hear anymore and had to switch the head piece to the left ear. I did not make too much of it that evening when I got home.
3. Next morning, I did not notice that I could not hear from the right ear. And indeed when I came to work, I could hear again from that ear. All seemed OK.
4. on January the 22nd my daugther and I drove with my car to Rhode Island (45 minutes) to visit an elderly lady. On the way we stopped at a Stop and Shop where I wanted to get some pasteries. In that store all of a sudden, there was a very loud noise in my ear. It sounded as if I were standing 2 feet from Niagara Falls. And when I got back to the car I could not hear what my daugther was saying, had to ask her to speak much louder.
5. That evening I went to the ER. After a wait of about 2 hours, I finally saw the lady doctor on call and she said ' THIS SOUNDS LIKE SUDDEN DEAFNESS'. She called an ENT doctor. That doctor saw me at 8:OOAM the next day. He asked if I had a viral infection and he prescribed 6 days of Prednisone. His audioligist did take an audiogram and that indicated that I had Zero hearing in the right ear and over 90% in the left hear. He told me to come back in 2 weeks.
6. my hearing in the right ear came back but it was very distorted.
7. Saw that doctor again 2 weeks later, he then prescribed a week of BIAXIN-XL because as he said, I had fluid behind in the left middle ear. So I took that stuff (was not aware at that time that it is Ototoxic).
8. That Thursday, my Son and wife came to my home for supper and I had to cuff my left ear to hear my Son's voice. This is when he said 'Mom it is time for a second opinion'.
9. The next morning, I called MEEI but could not see one of the specialists in Boston for several months, but was referred to one of their suburban facilities where I saw one of the ENT, I believe the following Tuesday. I told him the time line so far, he listed all on some paper but did not prescribe anything. Had one of the audiologits take another audiogram and told me to come back in 2 weeks. But in the meanwhile I got again the extremely loud Tinnitus in the right ear and I lost the distorted hearing. Called that office and got an appointment within days. Again the doctor wrote down some notes, but did not give any steroids. In the meanwhile, I had found out on the Internet about the hyperbaric oxygen treatments, I was told that those are only done in Europe. He prescribed some Klonopin to calm me down......and was told to come back in about 3 weeks.
10. In the meanwhile I came across this forum where people were talking about shots directly in the ear.
11. When I went back for my appointment, I questioned the shots into the ear and was told that there is no proof that the shots help and that it is probably that the patients talking about how the shots help are simply cases of 'spontaneous recovery'
12. At that appointment it was also decided that I needed a hearing aid on the left side (no need to amplify the right side since there is no hearing left)
13. Several weeks later, I had another audiogram and we tried different hearing aids with one of the audiologists on duty.
This is my time line. Needless to say that my file is longer and contains remarks that I would not want to post on a forum.
This time line also does not contain the visits later on to MEEI in Boston, but by then the time was well behond any hearing recovery.
Hope this helps
Hope01 last decade
I am actually just today starting lipoflavinoid. My parents are pharmacists--dad knew it was supposed to help with tinnitus and increasing blood flow to the ear, so I figure, what the hell. We'll see if it helps! Also taking a Centrum multivitamin now daily to try to get some of the other stuff that might help into my system. At this point, I'll try almost anything.
ulricha1 last decade
Lipoflavonoid has been on my list, but I have not tried it yet.
seattlestan last decade
Hi all
Well today was my last day of supernumerary work. I luckily also found out that my disability claim was approved so I feel more secure. I have been pretty stressed worrying about all of this.
I am going to see my doc tomorrow to see if I can get a mild anxiety med. so that on days when my tinnitus is bad I can try one to see if I get any relief.I'm not much of a pill taker and will not take them on a reg. basis, but sure hope this will help. Have any of you tried this. I am also going to ask for an 8 wk medical leave so I can rest and work on building myself up.I am supposed to be accommodated into another job but this will mean a big learning curve so want a good rest first. We will probably go down to Yuma for awhile and soak up some sun.
Found out my hearing in left ear has gone from 100% gone to 63.3dB. There has been some improvement, but it is still far below audible sound. I will be tested again at the end of Mar.
Onward and upward
anitime last decade
Nothing is straightforward is it? Riboflavinoid is not available in health shops here and only online from one UK supplier. I can get this same product cheaper by ordering online from the States (NatureStore.com) thanks to great exchange rates for us at the moment!!!Am I right in thinking that there are about 12 people regularly contributing to this site? How many have had no hearing back? (I have had very little back but I did not lose it all in the first place - I now have lost 45-50 dB, low to high frequencies which is not bad but not good enough to hear voices clearly). How many of us have had a recurrence or other ear effected? I would love one of the big University hospitals to take us up as a study group. I rang Nottingham University Hospital yesterday and spoke to a Professor (ENT) who agreed little was known about SSHL, he wasn't aware of any research into the shots and thought they wouldn't help! I am more and more convinced that it is our small numbers and the 'invisible' nature of the condition that contributes to the apparent lack of interest from professionals. Even the RNID did not know where I could get the shots in the UK though they did suggest that some Casualty Depts did give them.The Royal National Throat Nose and Ear Hospital do them so now I have to beg my ENT (who told me this week that I need to be more positive and could not have a Gadolinium enhanced scan)to refer me, even if he agrees this will take many weeks. The National Health Service really is great!!!
JeWeL41 last decade
JeWeL14, I feel your frustration with the NHS and dealing with this hearing loss. I'm going through the same thing. The ENT specialist I was referred to originally is very negative to any kind of 'new' treatments. He did start me off on steriod and I did see some improvement but he wouldn't continue them. He was shocked when I mentioned a steriod injection to the ear. I had to go to the States to do that (during a trip to see family).

I'm off to see another ENT specialist in London that I saw a year ago. He wanted to insert a shunt into my middle ear and then I could administer steriod drops for a week or so. However, I found out I was pregnant and couldn't have the procedure done. Had baby in November and it's been over a year since I lost my hearing. I'm kind of expecting that he'll tell me that nothing can be done - because that is the usual response I seem to get. However, this doctor didn't seem against doing the steriod injections if you are interested. I'll ask him again about it today.
mhoyuk last decade
Thanks mhoyuk, that would be good. Which hospital do you go to?
JeWeL41 last decade
Hi all,
I believe I should have added several items to my time line post:
first, I have high blood pressure and high cholesterol and I am on medications for that.
second, the famous clinic where I go is part of the Harvard Medical School, so we are not talking of some ignorant ENT.
They are investigating SSNHL, and that might be the reason why they will only give the shots once there is concrete proof that they work.
But I wish they would have taken the time to explain a few things to me so that it would make more sense to me
Also I am not in my prime anymore and maybe that is the reason why they preferred not to give the shots.
The bottom line is that I have no more hearing in the right ear. But I must say that I hear very well with my hearing aid (the BTE Savia from Phonak) in my left ear. And I chose that one because I wanted to have the same hearing aid that Buz Aldrin the Astronaut wears and therefore I did not hesitate to get that one despite its very high cost. Hey! I did that for myself.
I was just lucky that with my hearing loss I could get that particular HA.
Take care all
Hope01 last decade
JeWeL14, I asked about the steriod injections and they do them - but it obviously depends on your case. I had my GP refer me and it didn't really take that long to be seen. Saying that - my appt. today was a complete sham! The ENT specialist that I was scheduled to see wasn't there - apparently the appt desk made a mistake and now I can get back in to see him until May!!! I'm calling the appt. office tomorrow and raising hell. Hopefully I can get back in and see him within the next few weeks.

It's St Mary's Hospital in Paddington.
mhoyuk last decade
Just wanted to let everyone know that I am going back to my ENT on Monday for the expected 'you got X% hearing loss, do you want to talk about hearing aids' appointment. However, I did locate a doctor in Birmingham that is willing to see me on Wednesday; he said that he does administer the shots for SSHL. I'm pressing on.

Hope, thanks for sharing your story. I want you to know that your experience has at least inspired one person to get more aggressive about this! I am so sorry that you lost your hearing because of this, especially after regaining it for a period of time!
deaftoo last decade
Hi there deaftoo and Hope......I just want to remind you Hope, so you dont feel so bad about it--that I went to an ENT 24 hours after my initial loss. I went on prednisone right away at a high dose. I had
profound hearing loss in my left ear---it has been 8 months, i still having the ringing and can hear some sounds, but no speech discrimiation. Prednisone did not save me....it is not a definite cure. I was offered shots but turned them down--i did not want my ear drum punctured on top of everything i was going through, and they werent recommended at the time.
what? last decade
Thanks for your reply deaftoo.
Listen all of you guys and gals I AM SO MAD AT THIS MOMENT I CANNOT TELL YOU HOW MAD.
It is 5:40PM here on the East Coast.
And I was watching the local news on ABC Channel 5.
My children both called and said 'Mom watch there is a segment on sudden deafness on the News'. Told them that I am aware of it.
Guess what? it was the famous Dr. Steven Rauch who talked about sudden deafness and he made people aware that when you have what seems a blocked ear, it might be sudden deafness.....
But what made me scream is the fact that he told the the public that they give the oral steroid and also the shots directly into the ear.......................................................
I will call MEEI tomorrow morning and scream, scream, scream, so why was I not been given these shots.
Or did it take them this long to align with the rest of the US to give the shots..
I feel like calling ABC Channel 5
Sorry to vent out my frustration here, but I had to let you know.
And again for the newbies, please please insist on getting the shots right into the ear.
Hope01 last decade
Just left a nasty message with Team 5 at ABCNEWS Channel 5 and in the morning I shall call MEEI.
So sorry about all of this but I think you all know how frustrated I am at this point.
Thanks for listening.
P.S. instead of the shots into the ear I got Klonopin.....shame on them
Hope01 last decade

I understand you being so mad. I think I would sue 'em...I got so angry too. How can I help you ?

I've been following your story, so many 'perfect ignoramus' have dealt with you. It makes no sense.

You've been going through a lot, you are a very strong person. I admire you.

Bon courage, Al
deaf musician last decade
Thank you deaf musician for your support - I do believe that I am a strong person.
Flew back to the States with Swissair in the summer of 1989 with what I thought was a bad cold. That evening my family had to bring me to the ER, had to stay, doctors first said it was pneumonia. Next morning a doctor woke me up to tell me that I had lung cancer with a tumor the size of a half dollar. Told me also that I probably only had 6 to 8 months to live.
Well I showed them.
1. had a wonderful thoraxic surgeon from India
2. ate the right stuff
3. lost my job during that time as the Primary International PR contact for Cullinet Software as that CO was acquired by Computer Associates International.
4. I wrote to the CEO of that Corporation, and he Mr. Charles Wang called me at home and gave me a job in his Corporation. This man saved my live. I truly believe that I owe my life to my surgeon and to this CEO.
I know this is a forum that can be read anywhere in the world, but those are the facts that nobody can dispute.
5. With a job to go to, I had no time to dwell on my condition. In the meanwhile my 'cousine' in France also came down with a cancer but because in France in such a case you can stop working and yet get all the benefits and a salary. But guess what she is dead since a long time, her cancer had not metastased at the time, but she dwelled on it all day long and eventually it killed her.
Got to stop; I do not want to monopolize this board.
Thanks to all for listening
Hope01 last decade
Since I am an honest person, I have to report the following:
Dr. Steven Rauch just called me at home and told me that he is sorry that I got so upset. He told me that at the time of my onset on 1/22/2006, MEEI did not administer the shots and therefore his subordinate did the right thing when I saw him early in February. This was after I had seen a first ENT not affiliated with MEEI.
Dr. Rauch says that they NOW do a study where the shots are given by the MEEI ENT staff. He also told me that in the 2 minutes segment on ABC News, there was not enough time to go really into what is being done or not done at this point in time.
In any case he took the time to call me before his work day was over and I appreciated that fact.
Hope01 last decade

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
deaf musician last decade

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