Sudden Hearing loss _{Page 66 of 105}

A question for all:

I just got my first intratympanic dexamethasone shot, roughly 5.5 weeks after onset of sudden sensorineural hearing loss. The doctor said, come back next week and if we see an improvement, I'll give you another shot.

My question: Should I stop at one shot if there's no improvement after one week? Has anyone seen improvements after a longer time interval?

Thanks,
Ted

Ted some questions for you, I am about 4 weeks into my SSHL, and I am contemplating the shots as well. My questions are as follows. Did it hurt firstly? Did it induce vertigo? How much hearing did u lose initially?

Thanks
Tyson

Hello Tyson

I'd still like to know how long after an intratympanic shot people have experienced improvement. It has been five days and no improvement yet.

The shot was not pleasant, but I wouldn't say that it hurt. The run-up was uncomfortable; I'm not sure what the doc was doing, but he said he was just 'cleaning out ear wax.' Then when he injected the dex I felt a pinprick, then dizzyiness and a burning throughout my eye/ear/nose/throat region. It disappeared after a short time. After that I felt fatigued for the rest of the evening, with the slightest hint of an earache.

The worst part, truly, was trying, on doctor's order, not to swallow for an hour after the shot.

Not sure how to characterize how much hearing I've lost. Seems like I've got very little below 2kHz, and much of what I do have is horribly distorted. Plus a loud low-frequency roar of tinnitus.

No improvement at this point. I doubt I'll opt for a second shot. I read an article that explained that, by the time a month or so has passed, nerve cells that were damaged and might have recovered with treatment are irreversibly dead (search for the Dana Foundation and, on that site, search for 'Reversing Sudden Hearing Loss'). If true, this suggests that further shots wouldn't help.

Best,
Ted

Ted, the ENT I'm dealing with said he has given shots to those 6 weeks after (latest he will inject)after initial SSHL, and some of them have regained some hearing, but not as much as if they were to have injections 2 weeks after the onset, he is also inserting a ventilating tube into my tympanic membrane. He is head of Surgery at a presigious Hospital here in Canada, Good luck to you man, this whole ordeal is brutal.

Ted / Tyson,

I'm way ahead of you guys - it's almost my four month anniversary.

From what I have learned, if the first shot didn't work, the second likley won't help either. Also, it sounds like your audiogram is downward sloping (some hearing in the low ranges - little to no hearing in the high ranges) and in this case the odds are worse. (I've got the downward sloping curve too). Also, in rare cases, the shots can make the hearing worse. Sorry for bringing negative news.

I regained some hearing with prednisone (0% speech reconition to 20% recognition after two weeks). Two weeks after onset, I had the shot and went up to 30% speech recognition when I was tested a week later. Not sure if this was due to the residual prednisone, the shot or just natural recovery. I opted to stop at this point based on minimal improvement. (in retrospect, perhaps I should have tried once more. However, having been at 0% hearing for a while, I was pretty scared about going backwards.)

So, my recommnedation, for whatever it's worth, is to get another shot if you have essentially no hearing. If you have some hearing, then it's a harder choice. Although the odds are very slim, there is a chance that your hearing could get worse.

I am adapting every day. It still really sucks, though I block it out more and more each day. It's still amazing that when you lose hearing your ears ring constantly and loud noises are hell. I never would have imagined.

One final comment. That painful ear wax removal step is a combination of removing ear wax and dead skin. My doctor thinks it's now really really important to keep my good ear super clean to eliminate any risk of infection in my one good ear. If any of us gets an infection in our good ear, we are in deep *$!#:. So, every day in the shower when I am washing my hair, I push some of the suds into my ears, and then rinse it out. According to my doctor, this is the best way to keep your ears squeaky clean.

Good luck and I hope things improve.

Mark

Thanks, Mark.
Good luck to you, Tyson.
FWIW My hearing loss is in the low frequencies. I can hear highs pretty well - except for the distortion, which is weird and intense. Many high sounds produce a very loud booming. Some high sounds produce a higher harmonic that's far louder than the original sound. And my bad ear hears flat in pitch, about a quarter tone. Truly awful for a musician.
Still wondering how long after a shot improvements might occur.
Best,
Ted

Ted,

take a look at this Italian paper - it is hopeful!!

http://www.actaitalica.it/issues/2006/1-06/dallan.pdf

I corresponded with the Italian doctor that wrote this paper. He said that since he published the paper, he has treated about the same number of patients. With the larger number of patients, he siad that the statistical results are a little worse than what is presented in the paper - but still certainly positive.

Ciao,

Mark

Hi all,
Havent checked in for a while, but thought i'd say hello. I woke up deaf in my left ear on may 13th, 2006. So i'm at about 2 and a half years at this point. I did not get any hearing back, and I still have ringing in the left. Its not as loud as it used to be, and I can function well. To all of you who are new to SSNHL, you will adjust, it will take time. its a new lifestyle, but its ok.

Hello, everyone! I just found this forum and have read pages and pages of helpful info. I lost my hearing on 10/15/08 and it is profound. I was well and not under a lot of stress when a series of 'waves' started in my left ear and went across the side of my face. There was a headache (only on L side), nausea, dizziness, blurred vision...I thought I was having a stroke! It passed quickly, though, and I didn't tell my husband until it was over. It only hit once that first day, then nothing the next day, but by the third day I was in the ER with severe ear pain, projectile vomiting--and all of the above. The waves came faster, harder and closer together until finally there was a loud POP and I knew instantly that I had permanently lost my hearing on that side. The MRI and CT showed nothing, but I do suffer from two autoimmune diseases--and probably will never know the cause for this loss. I was in the hospital for three days on IV steroids. Since then, I've had a series of hearing tests (NO improvement whatsoever), shots in my ear, and have wonderful ENT who sees me again in January to set up my BAHA surgery (which, fortunately, my insurance covers). Apparently, I am a excellent candidate for the BAHA, as my right ear has perfect hearing.

I have been working at home since about a week after the hospital. I can now drive (it's a little scary, but it's hard to ask for help), but the tinnitus, fullness and dizziness are still really aggravating. I have had 23 surgeries in my 58 years, and I'm still here (like the Energizer Bunny) and I am not wimpy or have 'pity parties' -- however, this has really really affected my life. I tried to return to the office about 2 weeks ago, but headed home in tears within 2 hours. I always thought my office was only slightly noisy, but between the AC/heating fans, airplanes overhead, carrilon (sp?) bells outside my window, copiers, paging overhead, etc., it was all too much. When I went into our large dining room, all the activity and movement and noise overwhelmed me and I had to back up to a pillar and wait until my head stopped spinning. I use the speaker phone here at home and I can hear OK. I'm blessed to work for a company that allows me to keep working at home through my disability. Not sure when I'll be brave enough to try the office again...and wonder if my career may be over (even when I get my BAHA finally installed in about 4 months)?

I have 4 precious grandchildren under the age of 5 and want to hear their little voices - terrified I'll lose that ability if my other ear blows!

Thanks for listening!

It's interesting to hear everyone's account of their individual experience. I'm 32, very healthy, never had any major medical incidents in my life, gym 5 days a week, run, bike, swim, and eat very well.

I went to bed on a Monday, and in the morning that my symptoms appeared, a man was knocking at my door at 4:00am, (most times when someone is rapping at your door at that time you're inclined to think it's an emergency of sorts) so, half asleep, half total panic I raced for the door, in a daze, heart pounding..opened the door and it ended up being for my neighbour. That's when the deafness/change came to fruition as I slowly became conscious of what was happening, ear started ringing, fullness.
Personally I think mine was triggered by the stress of a simple situation.

SSHL is a very strange idiopathic outbreak of trauma in a complex organ. This week, I started going to a chiropractor who helps with peak spine sublimation with hopes of helping blood flow to the ears, stem. After explaining my story to him, he proceeded to tell me the staggering amount of people with Vertigo, balance disorder, and vestibular and hearing issues that have come across his practice in the last 1 year, he said it's strangely epidemic like, almost viral like.

As everything in life, we learn to adapt to our situation and environment, it’s what makes us who we are.

Thanks for writing, Jazzdore! I haven't been to my chiropractor in a while, but I'll check to see if her experience has been the same as yours.

The first ENT I went to said it would take up to 3 weeks to not be dizzy, but my current ENT said up to 6 months. Is there anyone out there that really took 6 months to be 'normal' (notwithstanding hearing loss)?

MIMI, depending on what the root of your vertigo is. Earlier this year when I had my vertigo it was sudden. For me I was out drinking and woke up with what I thought was just a bad hangover, it just never went away. I was diagnosed with Vestibular Neuritis, I too had MRI, CT and everything was fine. My advice to you is go for Balance Retraining Therapy, it helped me so much. The vertigo will go away, it takes time for your brain to rewire itself and the balance retraining helps speed the process up, feeling foggy, physically drained, confusion with the Tinnitus and loss of hearing is totally overwhelming, just now you're not alone and others have gone through the same thing. My advice, keep being the bunny don't lie down to it, keep yourself moving, keep yourself in busy environments, the vertigo will subside, and hopefully the BAHA will bring some stereo back to your life.

Fight the good fight. And to all, donate to the causes.

Thanks to MarkLM for the link to the Italian paper. It helped me decide to get a second steroid shot, despite the lack of improvement one week after the first.

Thanks to all for your comments. You have my fervent hopes for your recovery. Best of luck and thanks again for sharing your experiences.

For what it's worth, the best summary I've found about this condition, theories about its cause, and the efficacy of various treatments is

http://www.dana.org/news/cerebrum/detail.aspx?id=758

Ted

Yo Mimiof4,
I had just transferred to a quieter office venue a month prior to the onset of SSHL on 9/4/08. After getting whacked by the SSHL whammy stick, I was amazed how oppressively noisy my new 'quieter' office had become.
I have resorted to using wax or silicone earplugs to lessen the impact on my hyper-accussive hearing from the chit-chat of co-workers and limit the amount of distortion in situations where multiple speakers are present. It doesn't always work, but it lessens the number of times I jump out of my skin in response to unexpected noises.
The earplugs make less of an anti-social fashion statement than the ear-protecting shooting muffs I use when I really need isolation from sound. Watch out for the holiday parties. We had our office Christmas party last night and my head seems to still be spinning due the massive overload of input from a room full of co-workers chatting it up. Acupuncture seems to be helping me deal with the hypersensitivity to sound, even though I'm a big baby when it comes to pins and needles, according to the needle-pushing crowd.
The doctors have suggested I take some disability time to stay home from work in order to hide from the over-powering sound, but at least I can tell the people at work to be quiet and avoid the ones I can't, and the Americans With Disabilities Act gives you ammunition for accommodations. At home, it is tougher to ask my wife not to speak so loudly or to be more careful banging the pans, and asking the dogs not to click their toenails on the hardwood floors has proven fruitless.
I am flying back to Rhode Island on Monday and am not looking forward to dealing with all of the air travel issues of sound and pressure, but I have to start rejoining the world at some point.
Good luck.

Hi folks, haven't been here for ages and sorry to see so many newbies! I'm two years into SSHL so want to tell you all that you CAN live with it and many of the symptoms with distortion of sound do improve over time. Tinnitus is still annoying but not life threatening and the ear fullness though always there still, is often almost unnoticeable. From my own experience and having read anything and everything related to this I believe that only Prednisone in the first couple of weeks MAY help and after that it is down to positive thoughts and a healthy lifestyle - a good hearing aid helps too!! take care and Happy Christmas - Julie

Ted, I'm going for my shots, and my DR said he does a Minimum of 4 shots, over 4 weeks. Wish me luck I start next week. I'm starting to come to grips with the hearing loss, now If I don't go mad from the Tinnitus.

Tyson

Hi, Everyone...Thanks for all your words of wisdom and encouragement. So many of your experiences sounds just like mine--although I'm sorry we're all having to deal with this, it's nice to know it's not that I'm not trying hard enough! I may have to try the earplugs--I have them from my husband's snoring! I have heard about accupuncture, but am a total wimp about the needles!

I went to the grocery store today and do OK as long as holding onto the cart, even in the parking lot. Returning the cart across the parking lot is another story...

Sandmanranch, let us know how your air travel goes. I have to head for CA in February (a 3-hr plane trip) and am afraid of yet another 'pop.' You cracked me up about your wife and the dog!

Jazzdore, thanks for more good information. I am doing vestibular exercises and have found I am VERY slowly improving in that department, which I'm thankful for!

This bunny won't quit!

Lucky for all my American friends, you have this option down there, we do not here in Canada yet. This is supposidley a great habituation device for Tinnitus and Hyperacusis (sound sensitivity). 6 month treatment as opposed to the 12-24 for standard Pawel habituation with white noise generators. If anyone has any experience with Neuromonics, please let me know I'm willing to do some long distance travelling to help with my issues.

http://www.neuromonics.com/

Sandmanranch,

Don't worry too much about flying. I travel often and the only really bad thing are the messages over the loud speakers. They sure seem much louder and more annoying then they were just a few months ago!

The air pressure doesn't bother me at all and I'm sure you'll be OK. SSHL is nerve damage. The mechanical parts of our ears are still OK, so the pressure shouldn't be an issue.

Happy travels and good luck rejioning the world.

Tyson & Ted - keep us posted on the shots. Hope to hear that you guys have BIG improvements!

Mark

The reason I am afraid of flying is in May my ears hurt horribly while on a 2-hr flight. Nothing made it stop hurting and I wonder if it had anything to do with my SSHL.

Also, I have Seronegative Inflammatory Polyarthritis and was on Plaquenil, which now I understand is an ototoxic drug (although worse for your vision). I've been off it since my SSHL, but am hurting badly enough that the doctor wants me to go back on it. So, did the Plaquenil cause it? I'm afraid to go back on it now and maybe lose my other ear!

Have you heard of hearing loss from Plaquenil?

Follow up, this one is good...well let’s say comical. Signed off on the paper for them to put the tube in my ear so they can proceed to inject steriods through the tube into middle ear, so a student DR proceeded to put the tube in my ear, when the head surgeon came to gander, he told the student it was the wrong tube, so the student took it out and put a bigger tube, his shaky hands proceeded to rip my eardrum, soooo they had to patch the ear drum. After all is said an done, they give me eye drops for my ear...yeah eye drops to be put in by myself cause the DR is going on vacation(Prednisolone mostly used for Glaucoma) then I get a horrendous vertigo attack right after the procedure, profuse vomiting for 5 hours loss of faculties totally. Oh it gets better, I get home, and I hear a little pop and the little sound I had in the bad ear, umm..yeah is gone.

The eardrops are useless, tell me how you can put drops in your ear in hopes they are going to 'magically' fall into a 3mm tube into the middle ear. I put 5 drops in my ear, laid on my side, massaged my ear, changed the angle of my head for 1 HOUR, stood up, and all 5 drops came out.

I should have left well enough alone

Now I have 20% sound maybe, where b4 I had around 50%, I a have a hole and a tear on my eardrum, and I can't get the steroids into my ear. Please for all who read this..DEMAND THE INJECTIONS

Jazzdore - oh my goodness! What an awful ordeal for you to have to go through on top of everything else! Sounds like a 'comedy of errors!' I am so sorry--it sounds like your providers didn't know what in the world they were doing!!

Jazzdore, I am so sorry to hear of your experience! I hope things improve, and quickly. Best, Ted

Hi All, Just checking in to hEAR how all my sisters and bros. are holding up.i was stricken back in 9-14-08.around 3 mos.Did the steroids and waited.50% hearing back still have tinnitus though not as bad. Sounds like a computer running. i don't dwell on it and have been back at work for a month now. I work in a food store customer service desk.Running the lottery machine is a little tricky when the people mumble but i tell them that I can't hear them and they speak up. My biggest problem mnow is that I strained my back lifting my chubby 9 mo. old grand daughter and the spasms are killing me. So as you can see I've accepted the ear thing and have moved on. just carry ear plugs around with you. I seem to need them from time to time. Every week brings on a new change, you'll see. Hang tough, Trish

Hi all, I came across Jazzdore's recent post and had to chime in!

Jazzdore, reading about the tube fiasco and your consequent loss of the relatively good (compared to many of us..50% is a lot better than zero!) hearing in your affected ear, I'm totally apalled. Holy Hell! what in the world was a student DR. doing in your ear? It's not like when I went to the local med school to have my impacted wisdom teeth pulled by student dentists. This is one of your five senses here we are talking about..arguably one of the 2 most important!

I don't care if you signed something there is a point at which you may have a lawsuit just because of the blatant carelessness, incompetence and lack of proper follow up care.. poor treatment all round! YOur story only further justifies my sense of paranoia with regard to the medical community. Doctors are just people. There are both very good and very bad doctors and everything in-between.

Anyhow, Jazzdore, I'm so sorry for your experience and hope you are as okay as you can be. People, even doctors, often don't appreciate how important every bit of hearing and balance function is. Your hearing was treated like it hardly mattered that day...a student doctor left alone to perform a critical procedure, wow!

Mimi, your sshl story is amazing. I awakened from a nap to the hearing in my R. ear absent and a roar in it's place but no 'pop!' But, like you, I instantly knew that something really big was going on. I was at the ER as soon as I could find a ride. How strange that so many sshls reported include the experience of a loud goodbye 'pop.' Very sad! I don't mean to be negative but don't think it does any good to gloss over reality. It helps to say what you feel. Some friends and family are made uncomfortable by my truthfulness. What are you to do? It's the truth.

Anyway, Mimi, I know exactly how you feel about your remaining good ear. I'm terrified of losing my good ear. I don't know if the drug you asked about is ototoxic but very many drugs are. Even the most ototoxic drugs (Aminoglycoside antibiotics) may not include that info in the inserts that come with a prescription. I have read some posts at the beginning of this forum. One was from a woman who was deaf due to an aminoglycoside given her for burns. She was pregnant at the time and her child was then born deaf. Don't underestimate ototoxic drugs' role in sshl!

One recent post on our forum said that their chiropractor has noted a rash of balance/hearing loss/tinnitis cases..almost like a viral epidimic. I wonder? My neuro-otologist says he has seen 'thousands' of sshl sufferers over the course of his career (he is probably in his late fifties.) Of course, being the very specialized kind of doctor that he is everyone in the area with sshl might eventually see him. But, I do wonder if there's a viral epidemic or if it's like the new car syndrome when you notice everyone with that same car on the road.

Mark, I'm glad to see that you're still part of the forum. I don't contribute consistantly but like being able to check in and see how you and others are doing. It sounds like you are doing a lot like I am just (as you once wrote) 'plodding along.'
I liked what you wrote about keeping your ears clean with shampoo, funny but important. About me, I didn't think I had too much balance difficulty beyond the initial vertigo that passed along with the nausea, for the most part, within days. But, and my sshl happened around 5 mo.s ago, I get hit with spells of vertigo when walking lately. I will even ask to hold someone's hand until it passes. So, I guess, though mostly doing well, I'm not left unscathed by balance problems. They aren't constant but intermittant so I guess the exact cause is up for grabs. Well, believe it or not, I could write more! Again, I'm very sorry Jazzdore! Please post how you are after having your eardrum ripped and remaining hearing in your affected ear leveled by medical 'proffesionals.'

I wish everyone the best holiday season. Christmas is a time of noisy parties and family reunions, and can be very challenging. I'm going to try and make the most of it all. I'm grateful for what I do have.

Merry Christmas!, Frogs.