2+ years post op / question for surgery veterans

[sreda]

Hi folks,
I included this message earlier today in a reply to someone but will now post this question to folks at large who have had surgery some time ago.
Had a small -- 4mm -- AN remvoed on left side at House Ear in Aug. 04. Great outcome overall. All the post op effects went away or diminished greatly over the last 2 1/2 yrs. I have retained maybe half my hearing in the affected ear. Minimal balance isues.
But... recently had sudden onset of extreme imbalance, even vertigo, for several days. Last few months have also had much increase in volume and recurrence of ear noise, with the "noise" getting to be high pitched and grating. Of course I saw my ENT, we are exploring other possible causes for these things, before we revisit post tumor or tumor possiblities. My latest hearing test showed big decline in speech discrimination, altho the hearing tones/volume scores are the same as 2  yrs. ago. (note: MRI 1 yr. post op showed no tumor regrowth).

Have any of you had similar post-op experiences long term? I would be interested in your thoughts.
Thank you!
Sis R. in S.C.
 

[matti]

Sis R - I am over 8 years post op and a several times during that time period I developed varying symptoms and all MRI's showed no re-growth. Mine were related to the facial nerve misfiring and also scar tissue. My AN had severly splayed the facial nerve, and the hearing nerve was removed so no issues there. The doctors have never really given me a clear answer as to why the facial nerve will act up from time to time ???  I also have bouts of vertigo and balance issues that last for days and then disappear.

You are definitely doing the right thing by having it checked out. Any new symptoms that crop up for me, I don't hesitate to see my doctors. We usually do an MRI, I think they do it more for my piece of mind, which is fine with me.

Please keep us posted!

hugs,
Cheryl

[Jim Scott]

Hi, Cheryl:

AN re-growth, although relatively rare, is always a possibility for AN 'survivors'.  Instead of playing guessing games, I would strongly suggest to your ENT that you really want an MRI to determine whether there is a re-growth or another AN lurking inside your skull.  Call it for 'peace of mind' - as that is what it will bring.  If there is a tumor, the sooner you know it, the better, as it will have to be addressed.  If not, you can breath easier and your doctor can focus on other causes for your symptoms, having eliminated the possibility of a 'new' Acoustic Neuroma.  That would be my approach. 

Of course we hope it's not an AN - or a re-growth.  Only an MRI will tell you for sure.  I wish you well.


Jim[/color]

[nancyann]

Hi Sis R:  I'm only 5 1/2 mos. post op, but while at my balance therapy there was another woman there who had an AN removed by my docs about 2 years ago, & just developed balance issues.  We got to talking, she had an AN about the same size as mine, with post op decreased hearing & balance problems.  The balance issues resolved themselves, but recently started up again, so she was there for some therapy.   Nancy

[sreda]

Nancy,
Thanks for the reply. Intersting about the person you met at therapy... it will stimulate some conversation with my ENT. Thank you for the info.
Sis 

[nancyann]

Glad to help sis.

Now if I could just get MY balance back.......

[TastyKakeman]

Hi everyone, 3 months post-op left side face paralyzed ,left eye doesn't close, left ear hearing loss , droop mouth on left side that I feel is getting worse. My balance is bad and I have vertigo. I take PT every M-W-F but it doesn't seem to be working. I guess my real problem here is my mouth and the way it looks. I want to return to the work force but I am struggling with my appearance and my vertigo. I still get fatigued during the day and have to nap. Do you think I am over reacting ?  I am returning today to my ENT but none of these problems really relate to him. Has anyony have any questions I should be asking my ENT ?
                                                                      Bob, tastykakeman

[nancyann]

Hi Bob, I hear ya fella !!!
I've got the 'mouth droop' too  - real attractive, huh?
I'm going for acupuncture (As I've said, I'll try anything) - been going now maybe 1 1/2 months, twice a week, & I THINK it's put a halt on the droop (or maybe this is all the droop I would have gotten, don't know).  Anyway, I think it helps, gonna keep doing it till I go for repeat facial EMG in Jan.

Don't think you're over reacting at all - people do stare at me at work, (I've gotten use to it).     I work in a hospital, so lots of strangers walking by.  The people I work with are getting use to the appearance, I went back to work 2 months post op, 1 month after the gold weight.   I HAD to have the gold weight & lateral tarsal strip done, before that my eye was WIDE OPEN, couldn't move the upper lid without it,  I know I wouldn't have been able to go to work without it done, the eye burned too much before (& the $$$ was dwindeling quickly )
I'd ask the ENT (if you haven't already), what he/she thinks the chances are of the facial nerve regenerating.  It DOES take time, be patient. 
You're only 3 months out,  I'd expect your going to have fatigue for awhile,  the balance issues add to the matter.   I'm almost 6 months out & still tire easily, it's the balance, wipes ya out.

Best wishes on your journey,   Nancy

[Pembo]

Stay strong....my facial recovery is ongoing after 2 1/2 years. At 3 months I detected a small flicker and the road has been SLOW ever since.  As time passes things do get better and I started to notice all the other people in the world with face abnormalities. If you look close most people don't have "perfect" faces either.

I have a friend who is a PT and she has a Vestibular Speciality. Ask if there is one at your PT place, if not maybe check around to see if you can find one.  They just have a little more training in the area of balance.

Also have you checked into facial therapy? I see Todd at UPMC in Pittsburgh. He is excellent and I highly recommend him. Facial therapy can help!

Good luck to you