Facial Nerve Schwannoma recovery?

[JudysDaughter]

Hello there!  I'm writing this for my mom who just had nerve reconstructive surgery to her facial nerve using nerves from her leg and her tongue.  One side of her face is now completely paralyzed and she has no hearing in that side either.  This was done by Dr Chen and Dr Pirouzman in Toronto (yes we're Canadians but told your site was awesome from a facial therapist).  They were amazing.  We were told it was a long recovery (1 year) and it's only been since August 5th, 2008 (today is November 30th, 2008) - so just about four months.  She also cannot close her eye and she has had gold weights put in her eyelid, but it really doesn't help that much.  We were just wondering if anyone out there could tell us their recovery stories.... she really needs some hope right now as she been thru the ringer and just wants to start feeling better (on top of this she has had 2 mamograms in a week, a breast ultrasound, and constant diarrhea - does anyone else have any of these symptoms - they could be totally unrelated...).  Please write back if you have any stories - so we know the real recovery and how (if?) things have worked out.

Thanks so much.... we really just need to see the light at the end of the tunnel.

~Sandra

[saralynn143]

Hi Sandra.

There are folks around who have had the 7-12 jump surgery like your mom. The ones that come to mind are lori67 and Dfcman. You can do a search for their posts or a search for 7 12 jump and see what comes up.

You can also do a google search for facial reanimation surgery and see all kinds of before and after pictures by various surgeons. I did that soon after I woke up from surgery with facial paralysis and it helped me feel a little better.

On the eye issue -- I got a platinum weight and while it's not perfect, it does help. I don't blink all the way, but my eye stays shut so that I don't have to wear a patch at night any more. What does help me is to keep a layer of Refresh PM gel on my eye at all times. It makes my eyesight blurry, but I've adapted.

Best wishes to you and your mom. Hope her mammogram news is good.

Sara

[Kaybo]

Sandra~
Hi!  I am curious to know exactly what they did to your mom...I had the 12/7 jump when I was a year out & then had a T3 this past March (11.5 years later).  They used tendon from my leg in the T3 but nothing like that with the 12/7.  The BEST thing that the 12/7 did was it hooked that facial nerve back up to a "hot" nerve so the tone got so much better.  I got some movement back from the T3 - it had been SOOO long so they didn't know how I would do.  I was ecstactic with any movement!!     You can look on my blog (address below) if you are interested...there are lots of different pictures!  Please feel free to contact me if you have any other questions...Lori could maybe help you more since she has had the 12/7 MUCH more recently!

K

[Cheryl R]

Sandra,     I am a little different with the nerve surgery.      I had  some of a nerve from by by ear grafted in the same time as my facial neuroma was removed and the nerve severed.     I was told it would be at least 8 mos before see any improvement and that was about right and continued on for many months after.     I did not put in a gold weight and just kept lots of eye goop and did fine till the eye did close.     I look ok at rest as you can see if look at my profile pic but my smile doesn't work well so I do a closed mouth type.   I do have some movement on that side but not all of that half.                         This was not my first surgery as had had a regular AN removed in 2001.   This was in 2006.     I have NF2 and have  had bilateral tumors.                             The waiting for improvement is not fun.     I hope in time it does improve well for her.
Has she had the diarrhea checked out?          The stools checked for various parasites,        Any history of irritable bowel or ulcerative colitis or Crohns?       A CT scan or colonscopy done?        Does Immodium or Lomotil help it?      Has it been long term or recently?          The antibiotic Flagyl may help some causes.                                Also scary to have the breast issues.    I hope thst is ok.
          I hope all is better in time,                    Cheryl R

[Joef]

The eye weight might not seem to help right now... but it will !!   I'm sorry I did not get mine sooner!

the recovery is very slow...very slow... did I say slow ?  ... keep up the eye drops! and there will be light at the end of the tunnel.
I had no movement for one year... while its not perfect, I can smile now !! and its still getting better 3+ years later...   

[JudysDaughter]

Thanks for your knowledge and writing about your experiences.... it gives us more a real timeline.... didn't know if the doctors were just being careful ...

As for my mom's bowel problems... they have done a CT scan, have found fibrosis in her uterus and she's waiting on the medical world to get the scope done.  No history of irritable bowel syndrome or colitis or such....

If there's anyone else out there.... write ..... we'd love to hear your story.