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Facial Nerve Schwannoma/Neuroma
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 ;D
pjb:
--- Quote from: AliNYC on May 21, 2012, 11:53:44 am ---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
--- End quote ---
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
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