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Facial Nerve Schwannoma/Neuroma

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AliNYC:
I was recently diagnosed with a Facial Nerve Schwannoma/Neuroma.  I am 37 years old, living in NYC.  Feel like I have no where to turn for support or additional information with regards to my Facial Nerve Neuroma.  Being that is so rare (estimated 500 cases per year), there just aren't many of us out there.  Any help in finding fellow FN people...would be appreciated!!

Thanks!

Ali

Jim Scott:
Hi, Ali - and welcome ~

There are other FN patients that frequent these forums and I'm sure they'll be joining this thread, soon, so keep coming back here to check.

Meanwhile, please know that we're all here to offer whatever information we can, advice when requested and support, always.  Consider this a refuge of sorts.

Jim

Lou:
Hi Ali
So sorry that you have had to join our club. I have to agree, it is so hard to find information about facial neuromas. this is a fantastic site to find information and to vent. I have found that the symptoms for acoustic and facial neuromas are very similar. Keep posting and asking questions, you will get the help you need
Lou

pjb:

--- Quote from: AliNYC on May 19, 2012, 01:44:19 pm ---I was recently diagnosed with a Facial Nerve Schwannoma/Neuroma.  I am 37 years old, living in NYC.  Feel like I have no where to turn for support or additional information with regards to my Facial Nerve Neuroma.  Being that is so rare (estimated 500 cases per year), there just aren't many of us out there.  Any help in finding fellow FN people...would be appreciated!!

Thanks!

Ali

--- End quote ---
Hi, just wanted to say I am from NY as well but I do not have a Facial Neuroma but welcome to this group and hoping there will be others that will be able to help you. Have you decided what treatment to do have and you spoken to any doctors yet in NY? Our nerves are near but of course different functions so I would imagine if you decide on surgery I am almost sure the doctors will have to leave some behind I do not know if they would grow or not, I have a 3mm that was left behind of the 8th nerve and for 3 years now it has not grown.

Best Wishes,

Cheryl R:
I am sorry to hear of your facial neuroma.    I have had one as one of 3 tumors I have had due to NF2.      I go to Univ of Iowa for my care.     I was told they are not always 100% sure it is a facial neuroma until one gets in there at time of surgery.    Basically they are the same as an acoustic neuroma but have to be much more careful to not damage the nerve.    Also one can not be sure what the tumor has already done to the nerve.  One has to see a neurotologist which has some experience with them.       Many but not all leave some of tumor to avoid damge to the nerve and then have radiation be done or if see the tumor does grow.        My surgeon told me before surgery that he would take part of a nerve from by my ear and graft in if the nerve was severed.    Mine did sever and was nerve grafted.      I look fine at rest but the smile is off and no movement around the eye.    My eye does close and has some occ dryness.   I use gel at night and only occ in the day.          My surgeon has only had around 15 FNs so they are not frequent.   I go to a surgeon who does 60-70 a year and I have been with him for 11 yrs now.                  The Fellow there at the time of my surgery was Dr Pamela Roehm and was at NYU.    I have not checked lately if she is still there.                How big is your tumor.     Mine was a fast grower and not sure if there one year and around 2 cm the next.   I only was just starting to have facial symptoms about a month before surgery. So any dr you see will need to really find out what experience they have had.           Not fun to have this kind of tumor and be nervous about the outcome.                           Cheryl R

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