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HELP, does anyone have a facial nerve neuroma

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staceycc:
Hello !

We've now seen a couple of doctors in Boston (McKenna/Barker).  They seem to think that my dad has a facial neuroma and not a acousitic neuroma.  They say his condition is pretty rare (they see maybe 1 of these/year).  If you have a facial neuroma, can you give me some info on what treatment you decided on.  There is not much info on the web about facial nerve neuromas.  Thank you for reading!

Cheryl R:
Yes I had surgery for a facial neuroma in March.             I had a regular AN on the same side and had surgery in 2001 for it.    I have NF2 which means I have had ANs on both side so these can grow a bit more aggressive or different than regular AN's.  My MRI in Jan 2005 showed a possible something maybe starting and the MRI this year was showing quite brightly.   My surgeon thought it was a facial one I had started to have some facial symptoms already.      Since I had already lost my hearing they did a trans lab approach.     They tried to just remove the tumor off the facial nerve but it was on too tightly so they severed the nerve,removed the tumor and then took a nerve from in my neck and grafted it in the 2 ends of the facial nerve.         I do have facial paralysis but we are hoping in several months to have some function return.             I had surgery on Thurs and went home on Sun.                      I was starting to feel decent and ended up with a CSF leak 2 weeks after the surgery which they think was caused by the colloidal implant they use inside to help hold things together as the hospital had switched to a cheaper one and then had 3 people had leaks,  I had surgery again to fix this on Fri night and was home on Mon.    This was April 7th and was back to work on June 1 but I only work part time as did before surgery.          I do not have facial numbness but my ear is.    They said sometimes nerves take over in the area and I may get some feeling back in the ear.    Some days it feels number than others.                They say this is not a regrowth of the first tumor.                        I have some off balance problems but did pre op and is probably from my first surgery and then having the small tumor on the other side.
My surgery was at Univ of Iowa.          I have tired more easily with having 2 surgeries back to back but that is finally improving.                             I hope this is of some help and feel free to ask any questions you may have,                         Cheryl R.

staceycc:
thank you for the info!  did you consider having radiosurgery?  we are going to see a radiolgic oncologist soon.  The surgeons seem to think that won't work for him, due to the fact that he's had it for over 20years and his face is partially paralyzed.  He has his hearing, his only issue is balance problems.  We were hoping to go the radiation route so he doesn't have to lose his hearing.

Captain Deb:
 I believe a poster named Mark had a facial nerve neuroma zapped (radiosurgery) with incredible results.  He's left the board, but will still check messages if you find his name, (under treatment options, radiosurgery) and click on his name you can leave him a message--scroll down to the bottom of the profile that comes up.
Treatment options also vary according to tumor size--generally 3cm is the cut-off for radiosurgery.
Capt Deb

ppearl214:
Hey Captn.  If it's CA Mark, I believe his was acoustic.... and yes, he has had marvelous results from his CK at Stanford... he's over 5 yrs out with total tumor death, no signs of regrowth and life for him has certainly moved forward.

If that's not the Mark you are thinking.... then, .....I goofed  :o

xo
Phyl


--- Quote from: Captain Deb on September 13, 2006, 09:39:38 am --- I believe a poster named Mark had a facial nerve neuroma zapped (radiosurgery) with incredible results.  He's left the board, but will still check messages if you find his name, (under treatment options, radiosurgery) and click on his name you can leave him a message--scroll down to the bottom of the profile that comes up.
Treatment options also vary according to tumor size--generally 3cm is the cut-off for radiosurgery.
Capt Deb

--- End quote ---

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