Facial Nerve Schwannoma/Neuroma

[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]

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

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

[AliNYC]

Thank you, everyone, for your responses, encouragement, and insight!  It helps to know that there are others that can relate to how I am feeling.  I have had 3 consultations so far.  NYU Langone with Dr. Golfinos, Sloan Kettering with Dr. Selesnick, and House Ear Clinic with Dr. Rick Friedman.  I feel best with Dr. Rick Friedman.  I have hearing loss on the left side so far.   No facial weakness, numbness or paralysis yet.  My tumor is small...about 5-7mm or so.  I started to lose my hearing last summer.  All 3 doctors have recommended wait and watch with a second MRI scheduled for October.  It is such a bizarre place to be in...like a cloud of some sorts following me everyday.  At the same time, I am oddly motivated to be positive and peaceful most of the time.  Really digging down deep to celebrate my inner strength and beauty... a lesson that not everyone has to learn or accomplish.  Going out to California to see Dr. Friedman at House to discuss his approach in depth in June.  Really looking forward to it!  Thanks, again, everyone!  Will keep you posted.

Ali

[mindyandy]

Ali
Great idea looking into all your options and keeping an open mind. When you travel to California to see Dr. Friedman tell him Mindy T says hello 

[pjb]

Thank you, everyone, for your responses, encouragement, and insight!  It helps to know that there are others that can relate to how I am feeling.  I have had 3 consultations so far.  NYU Langone with Dr. Golfinos, Sloan Kettering with Dr. Selesnick, and House Ear Clinic with Dr. Rick Friedman.  I feel best with Dr. Rick Friedman.  I have hearing loss on the left side so far.   No facial weakness, numbness or paralysis yet.  My tumor is small...about 5-7mm or so.  I started to lose my hearing last summer.  All 3 doctors have recommended wait and watch with a second MRI scheduled for October.  It is such a bizarre place to be in...like a cloud of some sorts following me everyday.  At the same time, I am oddly motivated to be positive and peaceful most of the time.  Really digging down deep to celebrate my inner strength and beauty... a lesson that not everyone has to learn or accomplish.  Going out to California to see Dr. Friedman at House to discuss his approach in depth in June.  Really looking forward to it!  Thanks, again, everyone!  Will keep you posted.

Ali

Great choice with Dr. Friedman and Dr. Golfino is good as well there is also a Dr. Sisti at Columbia that is highly recommended by many.

Best Wishes,

[G_Man]

Ali
    The NYC chapter meeting is on June 9th at NYU Langone.  You might want to attend.  It's a great bunch of people and they all have inportant info to share about their experiences.

Glen

[Chritine Upson]

Hello there,
I also have a facial nerve neuroma which i am sure you will agree is no fun at all.
Mine was diagnosed over 5 years ago. I had unexplained twitching in my eye, cheek, lip and chin. Plus of course, terrible ringing & buzzing in my ear.
An MRI scan showed my tumor to be of considerable size but my surgeon decided that whilst it wasnt putting any pressure on my brain it would be wise to adopt the wait watch and scan policy.
Over time I have developed a facial palsy and paralysis of the affected side of my face (the LH side) and have almost no hearing in that ear too.
Radiotherapy isnt an option for me apparently and surgery would mean a severe facial palsy that couldnt be corrected.
My skull base surgeon decided it would be wise to address the paralysis rather than remove the tumor so in September last year I had a facial nerve graft and more surgery 6 weeks ago to connect the graft to the muscle... Hopefully in about 6 months there will be a big improvement and I will be able to smile again.
The tumor is still there but this is going to make me feel more confident again. A hearing aid is helping the deafness and also helps to mask the tinnitus. I am trying to be positive.
I have nothing but praise for my amazing Plastic Surgeon at Addenbrookes hospital, Cambridge, England...
Please get in touch. I would love to be able to chat to somebody else who has this very rare illness which makes us rather special I guess.
Regards
Christine
 

[Jill Marie]

Hi Ali,

I too had a Facial Nerve Neuroma, don't know the exact size, but it was described as large.  June 16th of this year it will be 20 years since it was entirely removed via the Translabyrinthine procedure.  My surgery was performed by Dr. Charles Mangham of the Seattle Ear Clinic.  I won't try to compare my procedure, diagnosis, results etc. with what you are going to have done as so much time has passed and things have changed a lot.  I'm deaf in the left ear, it was already shot before the surgery so they did the Translab to save as much of my facial function as they could.  I started loosing my hearing as a young child so I believe my tumor had been with me for about 30 years, I was 35 when it was removed.  My left eye closes 95%, it blinks with my right eye.  There is no tearing so I use LOTS of ointment, my main complaint.  I don't have any ringing or tinnitus and never did.  I have depth perceptions issues because of the eye ointment but my balance is pretty good.  My face looks normal at rest but smiling isn't something I do anymore, however I can still smile with my eyes and one can tell how I feel from what and how I say things.

I started working 30 hours a week 3 years after my surgery, I now work full time for the same company.  I celebrated my 35th wedding anniversary this March.  I had two young sons when I had my surgery, there doing fine.

Please keep in mind that every ones tumor is different as are the results.  The things my doctor told me I wouldn't be able to do after surgery I can do, things he said I could do I can't do.  One never knows. 

I love to take LONG walks and hike with my husband and two dogs.  Last year on vacation my husband and I rode our bicycles 40 miles in one day.

Keep us posted, Jill

[AliNYC]

Thank you, everyone, for sharing your personal stories with me.  Since I last posted, I have been experiencing more hearing loss and more tinnitus.  I actually hear the tinnitus in the other ear at times too.  Anyone have any suggestions for remedies/relief for the tinnitus?  I am leaving for California this weekend for my consultation with Dr. Friedman at House.  I am looking forward to it!!  Will keep you posted!!

Ali

[pjb]

Thank you, everyone, for sharing your personal stories with me.  Since I last posted, I have been experiencing more hearing loss and more tinnitus.  I actually hear the tinnitus in the other ear at times too.  Anyone have any suggestions for remedies/relief for the tinnitus?  I am leaving for California this weekend for my consultation with Dr. Friedman at House.  I am looking forward to it!!  Will keep you posted!!

Ali

Just wanted to wish you luck with Dr. Friedman I think you made a good choice as far as the tinnitus I have a hearing aid called the Widex and it has a Zen mode that helps somewhat the only suggestion I have is to listen to soothing sounds in the ear for now there isn't much else that I heard will help with the tinnitus....Prayers coming your way and please keep us posted.

Best Wishes,

[It is what it is]

Thanks for sharing your story.  I will be interested in what you learn from your consult. 

[leapyrtwins]

Anyone have any suggestions for remedies/relief for the tinnitus? 

At this time there are no known cures for tinnitus.

Lots of people who have tinnitus say that a change in diet helps a lot - things like eliminating caffeine. 

Jan