Author Topic: SSD  (Read 2598 times)

Esperanza

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SSD
« on: January 20, 2008, 06:51:12 pm »
Hello, I am new to all this and suffered my  total hearing loss in my left ear very suddenly two weeks ago - can hardly believe all that has happened since - I had no idea what was coming, minimal symptoms.  I have been on an intensive course of Prednisone but that was not started until a week after the loss.  I have read on here some people have had some success when taken after loss but how soon after?  The specialist recommended yesterday that I come off the steroids as I am suffering with side effects -would the hearing have started to return by now if it was going to or should I carry on with the higher dose just in case - cluching at straws?

Anyway I do know a few people who are deaf in one ear and they say they cope perfectly well "don't even think about"  they suffered their loss as children and one had a congenital abnormality.   Is it just a slower process because we are adults?

I think this is a fantastic site although a little scary at times....

x
Profoundly deaf suddenly on AN side with vertigo January 3rd 2008.
12mm left side AN diagnosed 20th Jan. 2008.  MRI  in July shows no growth. What do I do now?????

jb

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Re: SSD
« Reply #1 on: January 21, 2008, 02:20:15 pm »
Hi Esperanza,
I've had sudden hearing loss three different times but it was never total.  The first time was the worst, and although I could still hear sounds, my speech recognition was pretty much 0%.  This was before I knew I had an AN, and I figured it was due to allergies because the doctors kept telling me that was all that was wrong with me.  It did recover on it's own, but it stayed at 0% for several days and then s-l-o-w-l-y recovered over the next few weeks.  I don't think it ever got back to 100%.  I've read that about 2/3 sudden hearing loss patients will have some recovery, but I'm not sure how that applies to AN patients.

The last two times I've lost hearing were after I knew I had an AN, so I sought immediate treatment for it.  My doctor gave me 40mg prenisone for the first 5 days, and 20mg for the following 5 days.  I can't say for sure that it helped, but I guess it didn't hurt.  My hearing recovered pretty quickly both of these times.  My understanding is that prednisone works best if started within a day or so of the hearing loss.  Apparently the AN can disrupt blood flow to the inner ear in some patients and the prednisone may "shrink" it enough so that the blood can flow again.

Not sure what your chances for hearing recovery are at this point, but I hope it works out for you.  Let me know if I can help.
JB
2 cm right-side AN, diagnosed July 2006
Cyberknife at Georgetown Univ. Hospital, Aug 2007
Swelled to 2.5 cm and darkened thru center on latest MRI's, Dec 2007 and Mar 2008
Shrinking! back to 2 cm, Aug 2008
Still shrinking (a little), I think about 1.7 cm now, Aug 2009

sgerrard

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Re: SSD
« Reply #2 on: January 22, 2008, 12:42:26 am »
Hi Esperanza,

I did a round of prednisone and anti-viral before my AN was diagnosed. I had already experienced partial hearing loss at that point. The prednisone gave me some uncomfortable side effects, but did nothing for my hearing one way or the other.

I met a woman at a friend's house when I was in California getting cyberknife treatment. We had been talking for at least half an hour before she informed me that she was deaf in one ear. Of course we talked about nothing else for the next hour. She woke up SSD one day, the doctors tried to treat it for a few weeks, and then they gave up, and blamed it on a viral infection. She had an MRI, there was no sign of anything. She was about 30 when it happened, and has had it for 15 years. I was amazed at how well she had adjusted to it, I would never have guessed if she hadn't told me.

The hearing may come back, who knows, these ANs have minds of their own. But if not, two weeks is too soon to say how well you will adjust to it. Given a little time, the brain is remarkably good at adjusting to all sorts of changes. For that matter, maybe a BAHA is in your future.

You are right, it can be a little scary on this site sometimes. We all get very casual about these little growths in our heads and the wacky things they do, but it can be a bit overwhelming at times, especially when you are first diagnosed. The good news is that most things work out in the end, and life does go on after all.

All the best, Steve
8 mm left AN June 2007,  CK at Stanford Sept 2007.
Hearing lasted a while, but left side is deaf now.
Right side is weak too. Life is quiet.

ChrisB

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Re: SSD
« Reply #3 on: January 29, 2008, 11:26:44 pm »
Esperanza,

Assuming your ENT had an MRI done (properly) to rule out an acoustic neuroma (if s/he didn't, GET IT DONE!), you can also try direct steroid injections into the middle ear.  There are numerous articles and studies on the internet about it.  I can't tolerate oral steroids, and asked my ENT about the injections through the ear drum.  He put in a tube (just like little kids have when they have chronic ear infections, for example), and I only had to experience the discomfort one time.  I had twice-weekly injections of about .5cc dexamethasone for 3 weeks.  Unfortunately, with profound loss I knew my chances were slim for recovery, and I did not regain any useful hearing (still severe to profound loss, depending on the frequency range - and what does get through is severely distorted so no air conduction hearing aid would work).  But at least I tried, and will never have to wonder, "What if...."

So if you can't tolerate systemic (oral) steroids, talk with your doctor about the IT steroid option.  It may not be too late, particularly if you didn't end up at the profound loss level across all frequency ranges.  Don't give up yet!  And don't panic too badly.  It's very scary at first, but you get used to it, and with the assistance of one of the several devices available for people with single-sided deafness, you can at least improve your inability to hear on the "bad" side.  You won't regain directional capability if you've got severe or profound loss, but you'll also learn to live with that and often not even think about the fact that you can't hear out of the "bad" ear.  I had nearly 58 years of normal (actually outstanding) hearing until I woke up totally deaf on one side a year and a half ago.  It's life changing, but not nearly as devastating as it first seems.  Now it's more of a minor to moderate irritant - and only at times.  Most of the time it isn't much of an issue anymore.

Best wishes,

Chris

marg

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Re: SSD
« Reply #4 on: January 30, 2008, 12:06:36 am »
Hi Esperanza,
   I have been totally deaf in one ear for about 7 months now and I have adjusted to it.  It does take the brain a while to adjust - it is a process.  I can honestly say I have gotten used to it and mostly think about it in large groups or stores (can't tell where sounds are coming from).  6 months ago I would NEVER have believed I could adjust to this and life would be okay again... but I have adjusted and life is more than ok it is good again.   Hopefully you will regain your hearing..but if not look into the Transear.  It is a hearing aid that helps you receive the sounds from the side you are deaf on and it is very helpful.   
Margaret
Marg 
 4 mm  AN removed .. middle fossa   5/07 OHSU  Dr. Delashaw
AN scraped off facial nerve & balance nerve removed
 MRI  follow up showed AN gone ... thank you God
Some facial paralysis- . SSD weeks after surgery.  Trans-Ear Nov.2007 ... it really helps !