Author Topic: Update (FSR & Translab)  (Read 3464 times)

B

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Update (FSR & Translab)
« on: January 01, 2007, 10:47:45 am »
Update (FSR & Translab)

01/01/2007

Hello again,    Happy New Year!

I have been waiting for my facial nerve function to return to normal after removal of a vestiblular schwannoma (aka acoustic neuroma) and I'm now happy to report that the recovery is indeed happening. There is certainly improvement in cheek and lip muscle movement and the eye is taking care of itself much better, now.

Many of you will recall that my translab surgery by House Clinic doctors in May, 2006, in Los Angeles, was following failed FSR at Johns Hopkins Hospital, in 1999. The most recent MRI images showed significant tumor growth which was confirmed by a few physicians, including Dr. Rigamonte at JHH. And facial nerve damage was becoming evident; there was muscle twitching and the affected eye was abnormal in it's response to threat, it didn't blink like the other eye. So there was no doubt that further treatment was needed and no one recommended more radiation. And no one thought they could save my hearing.

The surgery went well. I recovered quickly and was able to see some the LA area with my sister and daughter. If you ever need this surgery, I'd say go prepared with plenty of eye drops and with a protective contact lens to prevent cornea drying/damage. The nurses did not do enough eye dropping. I should have done more myself. And I was late in acquiring the lens. That was uncomfortable. Maybe I should have had that lens immediately after the surgery.

My face has steadily improved. I recently stopped the eye drops (after about 6½ months) and more recently stopped the night time ointment and taping of the eye (after about 7½ months) and the eye feels good. I have to rub it to facilitate the blinking to work up some tears, now and then.

But the eye strangely produces abundant tears when I'm eating. The tears flow down the cheek when I'm really enjoying a meal. I get some looks.

My mouth looks pretty much normal now with some obvious movement on the affected side when I talk and smile. But the smile is still a little asymmetrical. My work as a speech therapist is back to near normal. I still can't puff out my cheeks or blow up an air mattress (or a victims lungs in cpr) or swish mouthwash without using a finger to seal the weak spot. I can't whistle with my lips, yet.

The tinnitus is still with me, no change there. My balance was only slightly affected. The total hearing loss on my left gives me some trouble, as with anyone with single sided deafness; the sound localization problem causes some weirdness and can be a little hazardous.

I'm to follow up with an MRI in May (one year). We'll see if the sliver of tumor along the facial nerve shows up. They left it, in order to avoid permanent facial nerve damage. And, like I said, the facial function is making a comeback.

Byron Jones, Georgia, USA
B in Georgia, USA
AN FSR June 1999
Translab May 2006

Jim Scott

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Re: Update (FSR & Translab)
« Reply #1 on: January 01, 2007, 03:01:48 pm »
Byron:

Great news - Congratulations!

Your long-term situation demonstrates that even a recurring AN can be handled and lost functions restored naturally.  Way to go!

Thanks for the update.


Time Heals[/color]


Jim[/color]
4.5 cm AN diagnosed 5/06.  Retrosigmoid surgery 6/06.  Follow-up FSR completed 10/06.  Tumor shrinkage & necrosis noted on last MRI.  Life is good. 

Life is not the way it's supposed to be. It's the way it is.  The way we cope with it is what makes the difference.

ppearl214

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Re: Update (FSR & Translab)
« Reply #2 on: January 01, 2007, 08:20:54 pm »
Hi Byron and welcome.  Formerly of Northside Atlanta... family still there.

thank you SO very much for sharing this with us.  Much can be taken from what you have shared and thrilled that you are doing ok.  It's not all that often we get to hear stories and thoughts from those that began their AN journey long before many of us (myself included) and sending you wishes for continued wellness.

Happy new year to you!
Phyllis
"Gentlemen, I wash my hands of this weirdness", Capt Jack Sparrow - Davy Jones Locker, "Pirates of the Carribbean - At World's End"