HELP, does anyone have a facial nerve neuroma

[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 

xo
Phyl

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

[Mark]

Hi All,

Just dropped in (as promised or threatened depending on your view ). Phy is correct I had a 2 cm AN treated by CK at Stanford in 2001. That being said, since the facial and hearing nerves are adjacent in the IAC, the treatment options, pros and cons tend to be very similar since the tumor will generally become involved with both.

Mark

[staceycc]

thanks everyone!
the doctors we saw at Mass Eye and Ear seem to think he won't be able to get radiosurgery.  they shot down GK and CK compared to what they have at mass general --- proton or linear something or other (haven't researched those yet  )

[Mark]

I would be very cautious about the Proton beam option as it is very unproven with AN's and the only other facility that I'm aware of that does it is Loma Linda. I don't know what specifically they would say negative about GK or CK, but it always helps to ask for studies to back up the claims when you hear them. It sounds like a couple of docs at Mass general "selling" the toy they have more than objectively assessing treatment options.

Personally, I am only aware of a handful of folks who had proton treatment through posts over the years and half of them had what I would term very significant side affects, much more so than with radiosurgery. One guy I recently talked with had it for another type of brain tumor ( kaiser sent him to Loma Linda) and he had some very challenging after effects related to collateral damage to the temporal lobe of his brain. based on the admittedly small anedoctal sample of my experience there sure seemed to be a high percentage of "bad" stories. I'm sure there must be good ones as well, but that would be my 2 cents

mark

[ppearl214]

HI Stacy,

Here's wishing your dad (and you!) well.

Knowing the relationship (all too well) between MEEI and MGH (heck, even on the same properties), I am surprised that they would note the Proton, even vs. the FSR at Brigham/Womans for your dad's facial neuroma.  We have come to learn that if there are certain "financial considerations" of one recommendation, then my suggestion is to carefully view all options in Boston (Metro).  Being here also here in town, there are many options:

Invasive Surgery:
Barker/McKenna at MGH (as you know, some of the best surgeons in town, as well as Dr. Peter Black at Brigham Woman's)

Radio-surgery:
GammaKnife at Tufts, as well as in Providence (Dr. Noren)
Cyberknife at Beth Israel (more than happy to discuss with you if you want, as I had my treatment there over 5 mos ago)
FSR (Novalis) at B/W
Proton at MGH

We live in a terrific medical mecca, as you know and since many of these facilities are all in one way or another affilliated with Harvard Medical School, the expertise of the treating professionals will be key.

Hang in there. You will read many opinions, thoughts and thought processing in decision making.  For your dad, if you all just take a deep breath and take each protocol research step by step, you all will be fine!

Phyl

[staceycc]

thank you so much everyone!

yeah, i hadn't seen much positive info on the proton, which is why i was a bit skeptical about it....

What hospital does Dr. Noren work out of?  I need to do a search on him to find his #.

thanks again!

[doogan]

Hi stacy - how are you. I was reading about your dad and am sorry to hear your story. I was diagnosed a few months back also with what they feel is a facial neuroma. I am still unsure as to what direction to head in as i do not have any symptoms yet that they can see. I do have very mild ataxia which i feel is related however dr's feel not.

Honestly i have no idea what to do yet - even tho i have been reading all the options for a while now. It just somehting i cannot get my head around.

Have you guys decided on a course of treatment yet,

I am seeing a radiation specialist tomorow at sloan in NY to see what he has to say.. altho this is a path that i am not sure i would like to go down..

take care

[Volley]

I also feel like I have a neuroma that is affecting my facial nerve more than my acoustic nerve.  My symptoms include a tingling/burning sensation on left side of face and earlobe.  I also have off and on sore throat like symptoms.  Perhaps this means this neuroma is affecting other nerves.  Not sure.  No perceived hearing loss.  The size has been put at 2.5 mm as of an MRI in early September.  I had an MRI in January that they interpreted as negative, but now that they have another MRI to compare to, they think they saw something back in January.  My doc wants to do a follow up MRI in one year, but I would feel better if it were in six months.  Any thoughts out there?

[Sheryl]

In November of 2001, I was diagnosed with a schwannoma (or neuroma) of the ninth cranial nerve which is supposed to affect swallowing and gag reflex.  In the five years that I have waited and watched and followed with MRI's, it seems to have increased 3mm.  My hearing loss is bilateral and related to age but I have been having an achy feeling like a sore throat on that side, tinnitus just on that side, and a different feeling when I rub that side of my face compared to the other.  I was also told a tumor on this cranial nerve is quite uncommon.  My next MRI is at the end of November and if it is time to do something, I have decided on CK.  Even though an AN is on the 8th cranial nerve and mine is on the 9th, I feel everything runs so close together that some of the symptoms may overlap.  In the past five years, I've become a breast cancer survivor and have helped my husband through his brain tumor removal.  His was a benign meningioma and our doctors find it amazing that both of us have something wrong with our heads!!!  Maybe it's in the water 

[Volley]

Sheryl,

You joke about the water . . .  Just the other day I read in the newspaper that the water well that serves our section of the city has been testing over safe levels for carbon tetrachloride (a known carcinogen) off and on since 2000.  What the heck?  My husband just got through colon cancer surgery (got it all with surgery, thank goodness), and now I'm getting diagnosed with a neuroma.  I guess I'll be buying the bottled water from now on, but who knows what is safe.  Congrats on being a breast cancer survivor and getting your husband through his meningioma.  How big was your schwannoma in 2001?  Mine is 2.5 mm or 3.5 mm (waiting for copy of report).  I know this is small, and I'll be waiting for a follow up MRI, but I'm just curious what people on the watch and wait program are seeing as far as the progression of their tumors.

[Sheryl]

My schwannoma was found incidentally in November of 2001 after a bad headache.  The headache had nothing to do with the tumor and turned out to be a blood pressure situation.  What a surprise!!  It was originally read at 9 mm but after a second opinion with a neuroradiologist, it was felt to be slightly larger.  My last MRI in April, '06 was read at 12 mm so in five years there has been very minimal growth.  I have another MRI scheduled for November - it was supposed to be in 2007 but I wanted to get all my medical follow-ups out of the way before the end of the year since we now travel between Florida and Cape Cod.  I figured if I waited until April of '07 and anything had to be done, it would intefere with our summer plans.  Except for the psychologic aspect, I am glad that I opted for "wait and watch" - it does weigh heavily on your mind but I try to keep busy and not think that every twinge and twitch on that side is a sign of growth.  Sounds like you've had a "full plate" too and glad to hear things are going well.  My mother had breast and colon cancer and years later is doing fine.  I'm realizing that these things, if caught early, are not death sentences any more.  Aside from the water, make sure you stay away from spinach!!! Crazy nowadays what you have to worry about.  Stay posted.
Sheryl