Sudden Hearing loss _{Page 70 of 105}

I'm so sorry! Hope it calms down quickly. Everybody has to cut loose now and then and get away from the frustration of this. Lay low, feel better.

Hi all.
I was diagnosed with SSHL 3 days ago. Profound hearing loss. Today the 'wind chime' tinnitus started. Yesterday, was the first day of dizziness/balance issue. While I am still quite depressed by this all, it is comforting that I am not alone. I am also a singer/musician in a band, and have been doing this for 35 years. I can't imagine at this point, not being able to do this anymore. The regular job I can do. I have not been to rehearsal since the incident, so not sure how it will work out. I will be here to learn, and pass on anything of value that I can. Have a brother and a niece who are doctors (not ENT), but who may have some ideas.
Thanks for having me,

Ed

Ed, I'm so sorry. If you are in Chicago, please go see Dr. Timothy Hain. He correctly diagnosed my hearing loss as a perilymph fistula, which has now healed and my hearing has returned. My daughter, oddly enough, who is ALSO A SINGER, had the muffling and tinnitus with the buzzing terrible electronic sounds for 10 days, almost at the same time I was suffering. She couldn't stand to hear a piano note or a guitar, farless her own voice. She has recovered...I believe this was a virus.

My ENT said I had SHL, but he was wrong, so get in to see the 'guru', who teaches neurology and otolaryngology at Northwestern and at least know you're getting the best advice.

Let me know what happens (also, they got me in in 3 days).

Best
2dogs

2dogs..
Thanks for your reply. I work near downtown, so I am going to try to get in to see Dr. Hain next week. My brother called me back after talking to a ENT friend of his, and concurs with my current doctors course of action. He agreed though, that I should see dr.Hain. While I realize that I have not given this any amoutn of time to get better as of yet, I cant stop being hyper concerned about a future without music and performing. Next to my family, it's the most enjoyable thing in my life. But as others have said...it could be a lot worse, and we sometimes have to deal with adversity, and life changes. Things could be a lot worse of course. Thanks for your compassion, and I'm glad to hear you and your daughters problems were resolved. It's great to hear success stories.

Thanks again,

Ed

Of course you are concerned, it would mean a life change! Are you on steroids? Are you doing ok on them? You didn't respond to how this started...was it just a sudden realization? Did it happen over a few days? If you've had a hearing test, have it faxed over to Hain's office, to help give them a clue.

What I learned from this experience is that hearing issues are still sometimes a mystery, so don't accept the first thing you're told. Time and patience are the keywords here.

2 dogs

Sorry I left stuff out. I did go to ENT, had the auditory tests. I did not see the results, but the doctor confirmed the diagnosis. I felt like I had a head cold on Sunday..woke up Monday morning with no hearing in the left ear. Went to regular doc first, next day went to ENT. Hope to see Hain next week.

Ed

Oh..I also heard back from my brother (ob/gyn). He talked to his ENT buddy, and he knows the guy I went to , and says he is very good, and concurred with his diag, and treatment. He was not big on the intratympanic injection as a first step. He said the dizziness/vertigo should subside some all by itself. It's tough to be patient, but I gotta try.

Ed

Walked over to the ENT yesterday from staying up all night with my dad in hospice room in hospital...4 mo. Audiology test showed no change from 6 week test of just over 5%. If stress is to blame for my SSHL, I am not seeing an end in sight. At least it started raining here to end our drought. ENT said BAHA would not be beneficial to me, but may consider that other doohickey that transmits sound from to ear to good ear. I guess it would let you know if someone is sneaking up on you, but I'd probably spin the wrong way. Picked up some killer custom earplugs at hunting expo. They fill the entire ear cavity and provided quite a spectacle to the crowd watching me grimace as I let the guy near my ears. Poor guy probably lost some sales from me giving the impression that itmust be painful.

Ed, with all due respect to your brother, I went to a good ENT as well, and he was wrong. This is your HEARING and you are a musician! You should be on steroids (you didn't say if you were, but that is STANDARD care and you should be!) but time is of the essence here. You only have a window of about 2-3 weeks, so don't hold back on the big guns...go to Hain, if for no other reason to have a 2nd opinion. He won't rush to inject you...he's not like that at all!!!

2dogs

Once again...I forgot to add something. I have been on oral steroids since I saw the ENT on the second day. My brothers buddy concurred this to be the best course of action.

Ed

Good..hope you are tolerating them well, and that they do their job. Keep us informed!

2dogs

how many milligrams are you on? I started on 10 mgs dosages of oral steroids (prednisone)within three days after the first symptom started and was on same for 7 days (7 pills the first day, six the second, five the third, etc.) My hearing grew substantially worse while on the prednisone, so I had a ctscan done which showed no abnormality, then I had the direct steroid shots in the ear (three total). My first symptom was October of 2008 and three months later I am the one out of four that has not been helped by the treatment though it was timely administered. I have been told by others on this board that the oral steroid dose should be 60 mgs for 12 days, not 10 mgs for seven, but I am not sure that would have made a difference in my case. Any other folks care to share the amount of their oral steroid dose? Are there any folks still posting that got there hearing back after three months or more?

I had sudden hearing loss in my righgt ear, One week ago Friday. Went to doctor next day just to make sure I didn't just had wax, I had none. She prescribed antibiotic and strong decongestant, I couls still hear some Saturday and Sunday. Wen I woke up Monday,My hearing was lost totally, how scary, My wife called an ENT and asked if they had any cancellations, because to make an appointment can take weeks. They had one, and I got in same day. God is watching.
He looked into the ear for 3 seconds and walked me to the audiologist. He performed the test, and it was so bad. He called a profound hearing loss, and started talking along the lines of getting used to it. I freeked out. Then he took me back to the
ENT, also not very symphathetic,or encouraging. I practically lost it. He mentioned casually the oral Prednison for 11 days and see if would help, and as a seccond thaught mentioned the injecdtion of Dexamethasone into the ear. It could help, I agreed any thing please, so went next day, and got it. At this point I was 4 days into the onset, but only 2 days since the total loss, that was the good news.
He then send me away to have one or 2 more injections about a week to 10 days apart. That night researching on line I learned that ENT may not be the best way to go, but to see an Otologist, a top speciallist of the ear. I made a list of doctors in the area, not too many. I called the first on the list next morning, I stated in no uncertain terms I have a medical emergency, and time is running out fast,If I'm not seen may never recover my hearing, No argument the receptionist told meI can get you in today, God is watching. The doctor very good manner and much more understanding gave me a more complete exam, and questions, lisstened to me attentively and then said that he did concurr with ENT aproach, exept that the injections, the best chance for recovery be given every other day, he gave me the Second one right then and there, I then went back 2 days latter and got the third one in less than 7 days, while taking the oral prednison. I'm also taking Acyclovir just in case for the possible virus. I take this only for 5 days. If it doesn't hepl it wont hurt.
Last night late exactly a week afther the onset, I can feel some improvement, I'm not tottaly deaf in the right ear, it still rings and feels plugged, but my spirits sure have changed, Monday I will go for my 4th shot. This is the story of my agressive approach to this ordeal, do not delay, go with the have artillery
immediately,I understand that if you wait too long it could be too late.
Don't be afraid if the shots, they do hurt, but it is brief and the outcome could be far better.
Give your self fighting chance. Doit now.
Remember whatever your idea of God is he/she LOVES YOU

I agree...although mine turned out to be a perilymph fistula (see? ENT was wrong and the audiologist as well) and I am healing, you are right, you should go to a neuro-otologist and should be on 60 mg predisone for 12 days. My sister had this a year ago and recovered just with the oral dose. It IS a medical emergency (tell everyone you know if this happens to them get help immediately!). I'm lucky to live in a major Metropolitan area with a university, so I found someone quickly. Anyone else should at least consider a second opinion. Good luck, hope it keeps improving!

I am doing so much better...my hearing test was normal. I swear this whole thing started with a virus.
Prayer can't hurt!

2dogs

Dear sssnhl,

I lost my hearing in Oct 2007. After 12 days I found an ENT who prescribed 60 mg of prednisone for about a month plus I received steroid shots in my ear every two weeks. He gave about 4 shots and I got 60-70 % of my hearing back. I believe that the shots worked better for me than the oral prednisone as I could feel the difference within 24 hours of the shots. The progress was higher with the first shot than the second and then progress started tapering off when he stopped the shots. Right now I am taking acupuncture treatment and neural therapy which seems to have reduced my tinnitus. Let us see if it goes away 100%.

Regards,

ALC123

2dogs - how did your ENT discover a perilymph fistula? I thought the only way to determine this was by operating.

He didn't 'discover' one, he diagnosed one because I had a slightly different report than a person with SHL has....I did not wake up one morning unable to hear...I blew my nose too hard and had a 'pressure incident' that instantaneously closed my ear, I had other symptoms as well, including some nystagmus, a little dizziness. From the beginning, I knew I had done this by blowing too hard when my sinus was plugged...I created a vacuum, that felt like a slow 'squeeze' on my ear and sinus, just as scuba divers call it. My ENT pooh-poohed this from the get-go. That's why I went to a specialist, and I'd suggest everyone does who has one accessible. My ENT, also, was very cavalier and unconcerned about my loss of hearing...which further told me he was out of his depth.

Hello Ed,

Welcome to our world. I wish you luck, relief, and comfort.

I've been rehearsing and performing with my acoustic trio successfully since onset of my SSHNL (which I perceive not as loss but as tinnitus that drowns out sounds),. My case is considered moderate rather than profoudn. I don't hear properly, but I can manage if the other players stand on my good side. The distortions and hyperaccusis are distracting and irritating, but they have improved somewhat over time. I don't know what it will be like to play electric music, when I get back to that, but I'm guessing it will be pretty difficult.

It's important to understand that there is no established dosage or schedule for the various treatments prescribed for this condition. The hearing loss often improves by itself, sometimes over several months, so it takes a large, well designed study to quantify the therapeutic effect of drugs. The studies that exist are few, small, inconsistent, and sometimes contradictory. Generally they indicate that a course of high-dose oral steroids can be helpful in something like 40 percent of cases, although there's a metastudy that concluded that steroids in any form aren't actually helpful. Beyond that, there's simply not much data. There is little scientific basis for recommending a specific dose or schedule. So doctors are left to prescribe treatments more on instinct than knowledge. The best you can do, I think, is find someone whose credentials and manner you trust, follow their advice, and hope for the best.

Note that steroids at this dose range come with their own risks, even with short-term use. One that scares the heck out of me is avascular necrosis of the hips (also knees and ankles), for which the only recourse is hip replacement. Onset has been documented to occur as long as six years after exposure to the drug. ENTs will say, 'the risk is small,' but in fact it's bigger than the risk of experiencing sudden sensorineural hearing loss. They also tend to insist that ears are more important than hips. I'm not sure I agree.

Nonetheless, starting three weeks after onset of SSNHL, I took oral prednisone 60mg for seven days, after that tapering the dose by 10mg per day. After that, I received two dexamethasone shots, one week apart. None of these treatments resulted in an improvement. I suddenly got worse a couple of weeks later and underwent another course of oral prednisone identical to the first. My ear is now back to the way it was at onset.

Next stop for me is a Chinese doctor. No particular reason. Just something I haven't tried yet.

Good luck.

Ted

Ted,

Thanks for your response. I had an appointment with Dr. Hain, neurologist in Chicago. His clinic is more for the Vertigo aspect of the situation it seems. He did suggest the Steroid injection routine, which I have an appointment for tomorrow. My oral steroid routine is almost done, and I have seen no improvement in the hearing, which is considered profound. I am still hopeful, but not overly optimistic. I too, will be open to try holisitic,homeopathic remdedies if they make sense. It's all so overwhelmingly confusing, but I will continue on. Singing and playing (sax,drums,perussion) is so much a part of my life for so many years, I pray that I will not have to lose that too. I have noticed that the tinitus is so distracting now, that I have a hard time hearing my voice clearly. I am going to get with my keyboard guy this week, and see what happens. We will work on monitor placement, and other things to maybe help. I front a 60's rock and soul band, and handle most of the lead vocals. Harmonies might be harder to maintain, so who knows. But I will keep on keeping on, and hope there is an fix or answer for me.
Thanks again for your reply.

Ed

Ed, I'm glad you got a 2nd opinion and are going for the shots. Indeed, it's amazing there are so many people with vertigo issues that they have a whole clinic there. Did you feel that took away from his attention to your problem? Because I didn't. I'm so sorry you didn't get better news, but let's hope the shots work for you. It's great that you are pushing on, working with your music and equipment to maximize your situation. Keep me posted on how you do with the shots. Did Hain give you any odds? Probably not, he's kinda not like that. Good luck.

Hi,
Both the doctor I saw, and Hain explained what I already knew. That the success of recovery is kind of dependant on how profound the hearing loss is. Even a 30% improvement, would not mean that much in my case. But..if there is significant recovery, it could be helped further by hearing aid. Of course, if all you hear is intelligible noises at very high levels, a hearing aid will only make the noise louder, and probably not make it more 'understandable'. I did get the impression that they were more focused on the vertigo/balance issue than the hearing, but thats just me. Hope the shots do something.
Thanks,
Ed

I suppose if you see people all day who are tipping over and can barely walk and are totally deaf, when one of us comes in, they think our problems are minimal...that's the trouble with most specialists, because they see the last ditch people. Hain IS known for his treatments of this stuff though, and the surgeon he was referring me to (which it turned out I did not need) is also very reputable. So you are in good hands, and it's just a luck of the draw situation...are you getting any improvement with the oral steroids? The noises for me started diminishing at about 2 weeks. Most people who have this seem to end up with at least less noise than in the beginning, even if the hearing level doesn't improve. So that's a good thing. Hang in there.

Hello Ed,

I haven't posted for a while, though know very well what your going through. I'm just over 5 months into this myself. I also had profound hearing loss (on day 1 I was completely deaf in my left ear) and I did regain some. I have about 30% speech recognition now - my low frequency hearing has come back quite a bit, though I still have profound loss at the middle and higher frequencies. What I did find is that even small improvements in hearing helps significantly with every day things in life - like finding the phone when its ringing. At first, I had know idea what direction to look. My tinittus and the 'fullness' are far less than initially, and I now have hours go by when I don't think about it. It's still bother me of course, but life has mostly returned to normal. And I did try a baha and hearing aids with no real beneift. If there's something else to try, let me know.

Best of luck and listen to the advice in the previous posts - I concur !

Mark

Hi all,

Hang in there, Ed. Thanks for your ongoing participation in this forum, Mark. Always a pleasure to read your comments, 2dogs.

Had a follow-up visit with my doc today, who told me two things I hadn't heard before.

1. After two courses of oral steroids (and two intratympanic shots), he told me absolutely not to take another, even if my condition worsens. He said that repeated courses risk serious damage to - what was it? I think it was the adrendal glands.

2. All along he has been telling me that my symptoms (low-frequency loss, moderate) had a good prognosis for improvement. Although treatment hasn't brought me any relief, today he said there was still a chance my symptoms could improve over a term longer than a few weeks from onset, as I had previously understood. He was vague about it and I suspect the evidence is anecdotal, but he said there was reason to hope for improvement in coming months.

Here's hoping!

Best,
Ted

Ted, glad you checked in...I have also read that one has to be careful with too many shots...that three is about the limit for improvement...more is overkill, and yes, steroids suppress the adrenals.

I've also read that people get improvement as long as 6 months out, so don't give up hope. Surely, there are folks on here who did NOT have that good luck. But my sister did, last year, about a month after her second course of orals.

Courage, all!

Ed,

Here's a link you might find inspiring. It's a lecture by Evelyn Glennie, an orchestral percussionist who took up percussion _after_ suddenly going profoundly deaf at age 13.

http://www.ted.com/index.php/talks/evelyn_glennie_shows_how_....

Best,
Ted