scar tissue and sudden hearing loss

[suz]

Hello AN friends,
Having a very unexpected series of changes and I am wondering if anyone has experienced this as well.
After my surgery in July, I had only mild-moderate hearing loss which I was extremely happy about. Another hearing test done 6 weeks after surgery had similar results but audiologist said "moderate"  loss. Alot of the roaring sounds in affected ear diminished; the tinnitus still present. I had really adjusted to the slight change in hearing just fine and things were stable until about 3 -4 weeks ago. Started to have episodes of VERY LOUD roaring and tinnitus accompanied by a weird spasm-like sensation in my head that lasted for a few seconds. Also having a return of a post-op sensation of fullness and pressure on AN side of head .Then a few days ago I had a profound change in hearing on the AN side. Hearing test today determined it is now "severe" hearing loss.  MD's started me on steroids today (oh yippee) to try to regain the hearing.
My doctor said that it could be from scar tissue, and that scar tissue can sometimes cause sudden hearing loss.
I have not heard about this before, but maybe I just didn't pay attention to those posts?
I have had one post-op MRI in October that showed either 6mm scar tissue, residual tumor or regrowth.  Due for another one next week; which my doctor had second thoughts about, but I want it so that I can trust that these changes are not due to some whopping big thing growing in my head!
When I knew I had to have treatment, I knew that the possibility existed that I would lose my hearing on the AN side. But it seems from reading others posts that the hearing loss after surgery happens immediately, not over many months. I can get used to SSD; I am worried about the atypical progression of events. I thought that after surgery I was really DONE .
Having a bit of a pity party tonight. Any one else want to join me? Especially anyone on steroids also? 
Suz

[sunfish]

Very sorry to learn of your decline in hearing.  I had CK, so my situation is somewhat different.  Had moderate hearing loss pre-CK, and maintained that for about 6 months.  However, neuro-otologist wasn't too hopeful - he said that lots of people retain their hearing in the short run with ANs that are treated with radiation, but lots of people lose more hearing in the long run.  Don't know how it plays out with surgery in the long run, but I think what the doctor was getting at is that treatment can damage those nerves and it can take awhile for them to gradually lose function.

Well, he was right, unfortunately.  I've also experienced a decline in my hearing and was treated around Thanksgiving with steroids (60 mg. prednisone taper for several days).  I don't think that was really strong enough, and I don't think I've really regained any hearing.  I'm a person who's had some really negative reactions to steroids, which are hard to get over, each time I take them. I've accepted the fact that I may well lose much of my hearing in that ear over time.  At my 6 month followup with my neurosurgeon, he said he wouldn't give steroids much of a chance of improving hearing in my case, anyhow.

Fortunately, I got a hearing aid right away, even before I found out about the AN.  I'm resolved to keep using technology to assist me as much as possible.  If you don't have a hearing aid yet, you might consider getting one.  I've found it extremely useful, although it takes a while to adjust.  My thoughts and prayers are with you, keep us posted!

[suz]

Thank you, Sunfish, for sharing your experience. I have heard of the slow decline in hearing with CK, but not yet from other post-op surgical folks. Looking forward to hopefully hearing from some others who might have had the same experience as I am.
Steroids really are not fun. What kind of symptoms or side effects have you had?
Suz

[sunfish]

Well, I took decadron the week of my treatments, and had the usual insomnia, racing heart, hot flashes.  My blood pressure went sky-high that week, and it never has settled down.  At that time, I was not overweight and was extremely active (long distance triathlete), and my blood pressure had been low normal for years.  Now I'm on blood pressure meds.

The prednisone caused me to lose any progress with regard to lowering bp, and it's taken another 6 weeks to settle out, despite a quadrupling of my meds.  So much of this problem seems to be steroid-related, although I've been suspicious that it could have been a side effect of treatment in general.  No way to really tell, and the doctors are skeptical.  But it's all too coincidental.

I dealt with the insomnia from steroids by simply staying up at night until I was really, really tired, as opposed to going to bed at my usual (earlier) time.

[cin605]

My hearing is decreasing by the month here...waiting till June for audio work up and MRI....I have no word recognition in right ear had some for the first 2 years after surgery.
Hope you find peace.Hugs!
Cindy

[CHD63]

Suz .....

Sorry to read that you are experiencing additional hearing loss six months out from surgery.

My hearing loss immediately following surgery has stayed essentially the same (20% hearing, with 100% speech discrimination).  I am due for another audiogram in about a month so I will know for sure.  However, some days my hearing is better than others.  Not sure if it is sometimes wax in the ear or related to fatigue and/or stress.  I have severe tinnitus and sometimes that cranks up to a frustrating level and then I just lose my patience with trying to hear.

I wear a Widex digital hearing aid most of my waking hours and that definitely tones down the tinnitus and assists my hearing greatly, especially in one on one conversation.

How are things going now after a week on steroids?

Best thoughts.  Clarice

[suz]

thanks, Cindy, sunfish, and Clarice for your comments and well wishes.
After a week on steroids I have noticed not much change. Maybe there is a slight decrease in the ringing but I might just be getting used to it. Another new disturbing symptom is pressure/pain along temple and cheekbone plus a numb spot on my left upper lip. Also lots of pressure in my head on AN side. Thankfully MRI is TODAY. Not sure what to wish for! If it is truly scar tissue that was seen on October MRI then that scar tissue is doing nasty things and there will probably be nothing to do about it. If it is tumor re-growth then I will be very unhappy! I guess best result would be that the steroids magically start working and all of t hese other nasty symptoms GO AWAY!!!!
Will keep you posted on the MRI results.
Suz