Sudden Hearing loss _{Page 78 of 105}

Thanks JeWe41 for the positive message. I'm looking for a little encouragement today. Lost all left ear hearing last Wed. Oral prednisone not having any effect. I was fine Wed evening, thinking it was a bummer, but I'd live with it. I've gone completely downhill since then.

I can't sleep, can't eat, am dizzy, can't think straight, having trouble functioning, really. Was hoping it was side-affects of Prednisone, but my doctorpoo-poo'd that today. His attitude was basically that I need to get a grip. I'm having a slight 'underwatery' feeling in the good ear which is putting me close to having panic attacks that I will lose hearing there. I think my doctor believes it is psychosymptomatic and he says it would be very rare for the other ear to be affected (although he can't tell me what happened to the one that was).

Anyway, he's probably right about that.

I think my biggest problem right now is worrying I won't feel better and dealing with the ringing in my left ear which has gotten louder each day.

Basically, I just want someone to tell me (if they honestly can) that this will get easier to handle and I will lead a normal life and work and function and enjoy things again. JeWe41's post helped. Any others?

JeWe41 thanks for the upbeat post! That is always good to hear. I'm already noticing the fullness and tinnitus settling down (or I'm getting used to them) to the point where I definitely feel like 'I can live with this' ...but I'm lucky that so far I only have partial loss in the bad ear. And I think it's pretty minor. So my biggest worry is things getting worse! Especially in the good ear, of course.

Rhonda - I hear you. And I'll tell you that my doctor also reassured me that the other ear is very very rarely affected. Oh and he actually said the prednisone CAN cause tinnitus (in the good ear also) because tinnitus 'is a brain thing, not an ear thing' which I'm sure is a simplification but may help you relax a little. The panic attacks could be the prednisone - it says so right not the bottle - my doc gave me Xanax just in case I needed help while I was on it and let me tell you, it did help on the occasions I took it. But the panic is also very real because it's a scary thing!! You're very early on...maybe the oral will still help? If not, maybe try the intratympanic shots (search for them and there are some posts earlier in this thread with some success stories as well as a couple links to articles). If your doc won't do it, I would find someone who will.

I just had my 2nd intratympanic shot. I'm actually having a rough day too, because I saw the other doctor in the office and did NOT like her - but she wants to take over my case because the MRI showed something that MIGHT be an acoustic neuroma. (She didn't want to do the shot b/c there was only a very slight 10 decibel improvement, but I asked her to anyway since that's something! Maybe I would get another 10 dbs out if it, who knows! Since she thinks it's a tumor, she doesn't think the shot did anything - but she doesn't know it's a tumor yet.) She's the one who handles all the surgeries. But the way she talked to me about it was not helpful - especially since the thing on the MRI was inconclusive (they're repeating it in 6 months). She seemed to be already assuming that's what I have, and that I will eventually (though maybe not for several years) need a major surgery which has a 50% chance of leaving me with NO hearing in that ear - and right now I have all my speech frequencies so that would be a BIG change. I will definitely get a 2nd opinion once I have my next MRI, but it's a long time to wait to know if there's something there.

Meanwhile up until today I was doing much better in everything except hearing. So I guess it seems like getting whatever answers you can is half the battle - once you know whatever you can, you can start to live with it and deal with it.

Hi all- so sorry to hear to hear Rhonda that you are having a bad time. i am new to this forum (posted earlier). I am on my third round of Prednisone- every time I get off of it the hearing loss returns. The prednisone gave me tinnitus in both ears and yes it is a brain thing not a ear thing. I'm trying to ignore it and sleeping with a noise machine. I totally understand the anxiety. I went through a really bad time when my hearing first started going out (low tones only). Best of luck to you. These ear things really are awful. The doctor's still don't know what is causing mine.

Thanks Shortcake. Wow - 6 mos IS a long time to wait on a repeat MRI. I'm sorry the dr concerned you about something that is so inconclusive they are letting it lie for 6 months.

Your thoughts about the Prednisone were very helpful. I know what the bottle said, but my doc was so dismissive of it (his bedside manner could be improved). If your doc offered Xanax with it, I feel like I'm not nuts and hopeful I'll start feeling better as I taper off this week.

Thanks for letting me know you were doing better - until the setback today. I hope you don't let it worry you too much. It certainly could be nothing. (I know I've had my share of repeat Paps that were normal!)

Thanks for the feedback Suncasa. Yes, some answers would be nice, wouldn't they? Doesn't look like I'll be getting any of those either (unless something shows up on the MRI). Thanks for the encouragement re the Prednisone. Hopefully, the way I feel right now has a lot to do with the drug.

Thanks Rhonda - I may ask if it's ok to do the MRI a little earlier. But I think the idea is that if it was inflammation from something else, give it a chance to go away for sure. I get that. I just don't do waiting very well! I really, really liked the bedside manner of the first doctor (and I liked how he didn't seem to rule anything out even though he suspected meniere's). This one seemed dismissive of everything but the tumor, even though we don't know yet. She's still going to do whatever tests I need, but it was her manner that I didn't like. And I don't feel I can switch back, since it is her private practice and she thinks she should 'take over my case.'

Another thing I noticed Rhonda - when you wrote about your feelings you said you can't think straight. I definitely had that on the prednisone - I couldn't keep count of things, etc. I am sure some of it is your emotions as your doctor suggested - after all, this is a traumatic thing - but it should get better as you taper off. I'm sorry your doctor was so dismissive of it! Mine did say that he doesn't usually find people have much trouble other than stomach issues (I had horrible heartburn by the way - it took about 6 days to kick in - get some Maalox ready just in case!) but that these mental things can happen too.

Here's an interesting article about Ginko and helping hearing loss-

http://findarticles.com/p/articles/mi_m0ISW/is_2002_Oct/ai_9....

Hi , I went through all of the symptoms that we all experienced here. My ann. date is 9-17-09. 1 yr. I can honestly sat that the tinnitus is so mild and broken down that I don't pay much attention to it. My hearing is probley 75% now. I'm getting a hearing aide in July. It was a rough road going deaf. Changed my life. It is so much better. Electronic accupunture does not work. I did it for 2 mos. It made the tinnitus louder. When I'm outside and stick my finger in my good ear , I can hear the birds sing in my bad ear. I can hear the rain. I was so excited when I first heard my husband snore again !
give it time friends. You too will accept this and move on. Catch Ya, Pat. Facebook has some great tinnitus and hearing loss groups also !

Rhonda, Hi I went through exactly what happened to you. I'm 54 and along with my age the hearing improved slower. As long as you are on the 2wk. predasone it will do the trick. You hearing will come back somewhat. The roaring in your ear will change for months. Each week will bring new changes. Use your telephonr dial tone to keep tesating. I can use the phone now on the bad side but, I prefer not to. It is somewhat blocked and muffled. I went on short term dis. from work when this happened. ( 2 mos.) The predasone made me crazy. I couldn't finish a sentence. I cried for nothing.As the dosage wears off you'll get very sluggish and tired. i gained around 12 lbs. since this happened. i ate out of annoyance.I have to takel that issue. i can assure you that the other ear will not be affected. I wear ear plugs now when I ride my motorcycle , use a hair dryer, or attend noisy functions. I would not care if IO did't improve anymore then I have already. From what it started as, and what I went through , I feel like I've been to hell and back. Keep your chin up. Trish

I posted this link on Aldosterone and hearing loss before- it's really worth reading. I just had the testing done for aldosterone levels and am waiting for the results. I have ordered some just in case.

Here's the link again-

http://findarticles.com/p/articles/mi_m0ISW/is_282/ai_n19170....

Re: Steroid injections.
My ENT doesn't do them. My 2nd opinion ENT didn't recommend. The ENT who is a friend of a friend that I had a telephone consultation with said too risky (eardrum punctures) and no confirmed benefits. BUT I don't want to miss anything. Has anyone had 1) complete sudden loss in one ear and 2) no improvement with 1 week of oral steriods and then have the injections help to any useful degree? Thanks all for your posts.

Hi Rhonda - thanks for posting about steroid injections. I hadn't heard such negatives (they did warn me about risk of eardrum hole, but said it usually closes on its own. I do have a small hole and am waiting to see if it closes - can take about a month). I can't speak to the results yet but I don't think I'm a poster child for it. I did them pretty late (5 or 6 weeks) and have only had minor if any improvement. From what I've read, you do have a longer window than the oral and should definitely finish your two week course before you consider them. Even my doc, who supports the injections, says he always tries the full course of oral first. Hopefully you'll get some answers. Here's where a discussion starts on the board that I found helpful, and also a link to a paper on them:
http://abchomeopathy.com/forum2.php/8853/66

Thanks Shortcake!

I had taken oral steroid and I had two injections also. After the second injection, the low frequencies improved from total deaf to 50db, the mid and high frequencies had less improvement, but not much improvement in speech recognition, so the doctor decided not to give me a third injection.

Now a year later, the low frequencies improved to almost normal, the mid and high frequencies improved 50db and 30db from total deaf, the speech recognition is only at 10% which is not much use.

One thing I have to warn you though, after the hole in my eardrum healed, there was a little piece of crystal formed on my eardrum. When I finally had my appointment at Stanford after three month of waiting, the intern tried to remove the crystal from the eardrum, she thought it was a piece of earwax!

I had a bad pisional vertigo not long ago, I think it might be related to the crystal formed on the eardrum, since there was a piece of crystal on one side of the eardrum, the other side might have it also, when it got loose, it may have caused my vertigo. Hopefully it is absorbed now.

n2sd2 - thanks for sharing - it's pretty encouraging that your hearing continued to improve over the last year. I'm sorry the speech recognition did not improve that much. That's really interesting about the crystal on your eardrum. My doc really downplayed the risks of the injection; I hope I get lucky and nothing weird happens.

Who did you see at Stanford? I'm gathering my records from my current doc to make an appointment at Stanford. Did you feel you got good care there? Sounds like when you are at a teaching hospital you run the risk of an intern messing something up - that is kind of scary.

Shortcake,

At Stanford, I've seen Dr. Ray Chang (several times) and Dr. Blevins (once).

At California Ear Institute I've seen Dr. Colen and Dr. Kmucha.

All were clearly knowledgeable and competent. Blevins seemed to be the most experienced.Kmucha seemed to be more willing than the others to 'think outside of the box.' But those two doctors didn't agree about my condition. I wouldn't say I'm especially enthusiastic about any one, but I felt like I was in good hands with all of them.

Suncasa: As I understand things, the fact that prednisone improved your hearing _only while you were taking it_ suggests an autoimmune disorder. For those of us who don't get relief from prednisone, the problem most likely isn't autoimmune.

BTW I've been seeing a Chinese doctor twice a week for the past three weeks. (He says my chi is seriously blocked, and my kidneys are very weak. But, apart from my ear, I feel pretty darned healthy.) Herbs, acupuncture, cupping - no improvement.

Best,
Ted

At Stanford, I saw Dr. Blevins. I couldn't get an appointment right away with any ENT doctor at Stanford despite an urgent request from the ER doctor at Stanford hospital emergency room. I was so dizzy, I spent a whole night at the hospital. By the time I was able to see Dr. Blevins, it was already three months later, I had all the treatments the ENT doctors could think of already, Dr. Blevins didn't suggest any tests or treatment.

At California Ear Institute, I saw Dr. Roberson and Dr. Colen. Dr. Roberson gave me the first injection in the ear, and then my case was taken over by Dr. Colen and she performed the second injection. A week later, both doctors decided the risk is greater than the benefit, so I didn't get the third injection.

Ted and n2sd2, thanks for the Stanford info. Very helpful to hear your experiences! N2sd2 I can't believe they took 3 months to get you in even in an emergency. I guess that's why you went to the CAI instead. I spoke to the receptionist of Blevins and Jackler yesterday (Jackler specializes in acoustic neuromas, which I may or may not have). My understanding is if I do have an acoustic neuroma, Jackler is the one to see - but we won't know for sure until a repeat MRI. However, I'd like to get his/their take on my existing MRI anyway. If it's going to take 3 months, I guess I'm smart to start now! Yikes! Right now I'm terrified of the whole tumor thing - especially since at the moment my hearing is quite functional (speech recognition is high) and I can't imagine having an operation which would be likely to take it away. :( Of course, that would probably be in the future as they'd most likely 'watch and wait' at this point.

Today when I picked up the phone and listened to the dial tone, I could swear I heard it slightly better. (2nd injection performed on Monday). However the fullness and distortion was also a little more today than I remember from a few days ago. So not sure what is up with that.

Anyway thanks again for the names and opinions!

Shortcake,

FWIW I too was told it takes 3 months to see Dr. Blevins. I believe Stanford has several ENTs who are more readily available. A friend of mine who has an acoustic neuroma is very happy with Dr. Chang (not Ray Chang - the other one, not sure what his first name is).

Surgery isn't the only option for an acoustic neuroma. My friend got Cyberknife treatment, a highly accurate shot of radiation, at Stanford. His condition seems to be improving.

The reason they want you to wait 6 months for your next MRI - I'm guessing - is that, if a tumor is present, it will take that long for growth or change to register.

Keep in mind that tumors are very rare! Most likely you don't have one.

Best of luck to you!
Ted

Thanks Ted! I'm ok with waiting the 3 months since I feel I'm getting fine care right now in San Jose. I just want to make sure they're not missing anything, and get in to the 'experts' sometime before my next MRI so that I can get their take on everything both before the MRI and afterwards.

Glad to hear your friend is doing well with Cybeknife. I'm nervous about using radiation (cancer risk, etc) but I will definitely be discussing that with them as well. I hear Dr. Chang is the guy who developed it!

Yep, I agree with you on the reason for the 6 month wait. I know they are rare - however my current doctor believes that's probably what I have. (2 mm something showed up on MRI). I've also been thinking about the 'history' of my hearing...for a few years I've noticed I tend to switch the phone to my left ear, and that I seem more sensitive to noise than others. I thought it was nothing. And then all of a sudden my hearing dropped and so I went in - but it could have been slowly brewing for a while. Logically that seems to make sense with how an acoustic neuroma would work. But I am always self-diagnosing and really have no idea!

Anyway, today has been a good day overall. Still hearing the dial tone pretty well - I'll be interested to find out on monday if there's any actual improvement.

I have not been on this forum for a long time, however today as my car is in the repair shop and I have no wheels, I have time to do some posting.
First of all, I see that the posters who were active when I was active on this forum seem all gone, maybe they did get their hearing back????? I, on the other hand did not. My onset of sudden deafness in the right ear was on 1/22/2006. I am a patient of the great Mass Eye and Ear Infirmary under Harvard school of medicine in Boston.
The hearing on the left side is slowly also going down. There, I wear a BTE hearing aid the Savia 211 from Phonak.
What really worries me is that I have such 'brain static' in the deaf ear and the feeling of oclusion 'fullness' never went away. On the left side the Tinnitus is driving me crazy, was masked during the day with my hearing aid, but even that is not the case anymore.
I am a strong person, I survived lung cancer (never smoked) in 1989 when the doctors gave me 6 to 8 months to live. But even so I have days when I truly feel that I had enough of these ear problems. I am still not a candidate for a cochlear implant, but when that day comes I will have one. I belong to the SWC club and there I met a lot of people with CIs and they seem very fine with these implants.
So my message today is, do not give up even if you feel so as I do on occasion, because my friends tell me that with their CIs they are doing fine.
Take care
Hope01

Thanks for your words of encouragement- you seem to be a remarkably string person. Kudos to you. I hope that eventually you can get an cochlear implant!

Hope - nice to see another poster who's been here a while. A few people do check back, but I think many move on after a while. It's good to see how people are faring after time has passed.

Did they ever determine what is causing your hearing loss? Seems like you have one side sudden and one side gradual.

shortcake - No unfortunately Mass Eye and Ear Infirmary in Boston where I go cannot definitely say what caused my sudden deafness in the right ear in 15 minutes on 1/22/2006 - But since I had an upper viral respiratory infection early in November 2005, they think that is what caused the sudden deafness. They say most likely that infection unknown to me moved into the right ear and killed all my hearing hair cells. I only got over the counter medication from my GP in November for that infection.
I wish I had gotten an antibiotic for that viral infection. Of course one has to make sure that the antibiotic is not 'ototoxic'

Take care
Hope01

Hope - sorry to hear that they couldn't figure it out.

I had a really good appointment today. I'm cautiously optimistic - I almost didn't mention it because I'm afraid to jinx it - but my hearing in all frequencies except for 250 db was 'within normal' range. Last week 1000 was borderline bottom of normal and 500 was definitely low, along with 250.

I'm going to wait before jumping for joy, because I feel like once the steroids from the shots are out of my ear/system it may go back to how it was. But for now it certainly is not bad news!! She did one more intratympanic shot and that's the last one we'll do. I just hope this 'sticks'!

Just an update.
I posted last Monday - 5 days after I suddenly lost all hearing in my left ear. I was feeling a little desperate and looking for someone to tell me it was going to be okay. For anyone who may read this shortly after something similar happens to them, I want you to know that I already feel a million times better. Prednisone can kick your butt and don't let anyone tell you differently. OK, so I'm deaf in the left ear - I can hear out the right. I'm already learning to ignore the tinnitus (and that icky pressury feeling) and I'm feeling much more 'myself' again, now that I'm off the steroids. I'm fortunate that I don't have a lot of dizziness or nausea. If the hearing loss seems like it is a big problem, I'll look into a BAHA hearing aid - right now I'm evaluating it in different circumstances. I have an appt with an audiologist who specializes in tinnitus coping methods, but I'm already feeling like I will get used to it - as thousands of others (including my husband) have. Anyways, just wanted to reassure anyone on Prednisone that a lot of what they might be feeling, both physically and emotionally, could impriove much after they finish the steroids. It is an adjustment to make and its scary when something so dramatic happens and no one can tell you why, but I know that I'm going to be okay. Hang in there!