A new AN/VS survivor.

[gregjohnson1024]

Hey folks,
  I've only just found this forum, so I thought I'd introduce myself.  I became one of your erstwhile colleagues on December 13th 2005 (about three weeks ago) when I had my acoustic neuroma (or vestibular schwannoma, as they prefer in France) removed.  I'm a 32 year old man, and had just discovered in October that there was something more sinister that wax buildup causing my hearing loss.  The tumour was confirmed with an MRI (30mm at the time) very quickly, and various pre-op tests were done within two months.  The operation was performed here in Grenoble (the French gateway to the Alps) by Professors Gay and Schmerber.  Prof Gay, the neurosurgeon, attempted a retrosigmoid at first (trying to save some of my hearing which was only -10dB compared to the other ear) but it gave insufficient view of the tumour, so after a couple of hours, he got the ENT (ORL in French) surgeon, Prof Schmerber, to start the trans-labrynthine approach. 

Although the MRI showed very good seperation of the tumour from the (heavily distorted) brainstem, this was not the case when I was on the table.  The surgeons had to sweat to debulk the tumour, using microtools, ultrasound, electrical cauterisation, etc etc.  Although I was under for a few hours longer, the actual operation lasted 13 hours - a difficult time indeed for people around the globe who love me.

As you'll know better than I, the translab approach sacrifices the auditory nerve for the best access to the tumour, so I woke up deaf in one ear.  However, the facial nerve was badly stretched around the tumour ('like a piece of spaghetti') and while physically preserved, lost all electrical activity during the op.  I have 100% facial paralysis, which I am in the midst of adjusting to.  I guess it takes a long time, and three weeks doesn't give me a lot of perspective - but I already detect the passing of the initial honeymoon period where I was generally happy to be alive (no doubt aided by copious quantities of morphine) and the entering of a phase where I am started to resent that I have left the hospital to all outward appearances worse than when I went in.  Internally, that's another story - my MRI images are online somewhere  - if anyone is interested, I'll point you to them.

Anyhow, my energy is fading.  I did want to say 'hello' rather than just lurking, as would be my wont, and I'll be back soon.  I thought I had learnt alot about this thing before the op, but I think the real learning is just beginning...

greg

Be kind, for everyone you meet is fighting a great battle - Philo of Alexandria

[Pembo]

Hello Greg and welcome to our very elite club. And you are very correct when you say that your learning is just beginning. I too awoke with one sided deafness and a frozen face when I went in to the hospital I could hear just fine and smile beautifully. 

You are smart to have already figured out that the euphoria of just being alive does wear off and the anger of the tumor begins.

I'm here to say it does get better but it takes time which equals patience. Patience is something I have very little of with 3 small children. You will have your good and bad days. Hopefully your face should start to twitch in 3-4 months. (Mine was 4 months almost exactly). And it still is reanimating 19 months later.

As I like to say, I'm not back to normal but this is my new normal.

Stay in touch and keep the faith........

[Jeanlea]

Hi Greg,

Welcome to the club and sorry you had to join it.  This club is by invitation only.  Isn't that special?  The one invitation we would all turn down if we had a choice. 
I can truly understand your feelings after surgery.  I went into surgery 4 months ago today with a minimal hearing loss and a nice smile.  I woke up after 13 hours of surgery with no more smile and deaf in one ear.  I knew facial paralysis was a possibility going into to surgery, but I was really hoping it wouldn't happen.  Apparently my 3.5 cm tumor was very much entangled with the facial nerve.  I don't know all the details.  I was asleep at the time.  lol
I did not go through the phase of being happy to be alive.  I always had the thought that this was not something that was terminal.  But there were times afterwards that I thought it might not have been a bad idea.  Happy to say I've gotten over that idea.
My face was 100% paralyzed.  My eye doesn't blink on its own, but I can close it.  Might be the gold weight that helps a little with that.  Just after 3 months, okay 3 months and  days but who is counting, I got some movement on frozen face.  It is still beginning to move more and more each day although the process is exceedingly slow.  Guess I didn't have enough patience and needed to be taught a lesson.
Just wanted to share a bit of my experience with you so you can have a bit of hope.  I know that hearing about people who have gotten their faces back gives me hope for the future.
Once again, welcome.  This is a great place for information and friendship.

Jean

[Bernadette]

I am 3 months past surgery, and I work in a grocery store where you are supposed to smile at everyone and help them find everything. Smile with a half frozen face, and talking to people by the end of the day I am in pain. Nobody can understand what you go through. I think of before my surgery all I had was ringing in my ears, now I have all these issues. It has got better............? But your whole life diffently changes.         Bernadette