In need of advice

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In need of advice

Postby nmn22 » Thu Jan 30, 2003 9:26 am

My Name is Nissa Novas. I am an Emergency Medicine Physician in Philadelphia, PA. I am 28 years old and was diagnosed with NF2 in 1997. I had brain surgery in 1997 to remove a meningioma and at that time had already lost most of the hearing in my left ear. I had been doing the "watch and wait" thing with frequent MRI's and audiograms. My most recent audiogram shows complete hearing loss in the left ear and a moderate hearing deficit in the right ear. Obviously, my neurosurgeon wants me to pursue some type of radiation. A committee in Pittsburg is currently reviewing my case to determine whether gamma knife or FSR would best preserve my hearing. I know there are no gaurantees but I really need to hear from anyone who has had either procedure done and whether or not their hearing was affected positively or negatively. And any other sympotoms or side effects they experienced. I am very desperate at this point. I know I have to do something...but if I lose my hearing I lose my career in Emergency Medicine. If anyone has any advice or where I can get more info please write. Thank you in advance.

God Bless,
Nissa
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In need of advice

Postby Ghostwriter4 » Thu Jan 30, 2003 12:51 pm

Hi Nissa

My name is Michael and I'm a 34 year old fellow
living in San Diego but born and raised in New
York. I have NF 2 diagnosed in 1990, I had my
first brain surgery in '90 in which they had to
cut the auditory nerve which left me deaf in that
ear and with facial paralysis. I had the same
"wait and see" approach as you for years and a second brain surgery in '92 which saved most of my hearing. But I do wear a hearing aid in that ear and the multiple remaining tumors in the brain and spinal cord are stable, for now. As you know, every procedure carries a risk. Only YOU can determine which one is best for YOU. I will say this though. Since having experimental chemo('94-96) there has been no significant change in anything including my hearing. If nothing has grown, and it were me I would seriously question the need to do anything
since you still have hearing and it may never get
worse. Just a note of information in case you're
not aware you should check out the Department of
Rehabilitation in your state as you would be eligible for services to retrain. One of the fellows, Jeff who posts here and has NF 2 like us
and is a music teacher is retraining in another
teaching area while he still has hearing to prepare, just in case, to stay gainfully employed.
Hope this helps. Be in touch if I can be of further assistance.

Sincerely,
An NF 2 friend
Michael
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In need of advice

Postby kani2327 » Fri Jan 31, 2003 5:29 am

Hi Nissa, visit the board often!! we need more ppl with NF2 posting!

I am 23 turning 24 in November. I had fracionnated gamma knife done for my right tumour. It has stopped growing so the doctors feel I should get gamma knife again for the left tumour. I have bilateral ANs. However, the thing that is scaring me right now is getting radiation done for the left. I still have good hearing in that ear and I am afraid whether radiation may harm it. The right tumour caused the right hearing disappear. But this was BEFORE radiation, so whatever side effect the radiation may cause would not affect the hearing on the right side.
The side effect of radiation for me, was a week after of nausea, I couldn't eat and drink cuz I would just throw it up. So that's not the fun part. And when I had fractionnated gamma knife done I had to wear the frame for five days, and i don't know how much you can take pain, but i can't and that HURT. left me with headaches. you are not supposed to lose hair, however i did, but that was just stress. The radiation did cause the tumour to swell twice its size, but it is gone now. I feel the swelling left me with balance problems and tremor in the right hand (i can no longer write legiblely) but my doctor says it is because the left tumour has shown signs of growth that caused that.

But like what Ghostwriter4 said, everybody is different and every procedure carries a risk. This is just MY story. It's a good idea to maybe research in other fields of employment IF you do lose the hearing, because it may help to get employment in other areas.

I'm sorry but no one has the "right" answer or a solid one, and that's why NF is scary. But, remember you are not going through this alone, everyone has a story, and who knows your story might be one of the successful ones.

Grace
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In need of advice

Postby J » Fri Jan 31, 2003 10:00 am

Hi Nissa,
My name is Jeff. I am 37 and also have NF2. I had one AN removed just about 1 year ago and went from perfect hearing in that ear to virtually none in the course of just hours. Surgery for this tumor was the only option due to it's size and the fact that it had a 5 cm. cyst attached. I have an AN on the other side which I am waiting and watching. I am currently a music teacher, but have already made arrangements to move into a Librarian position next fall. All the doctors I have spoken with tell me that deafness or hearing impairment is highly likely. I have chosen to make this move while I still have good hearing in one ear. If I maintain my hearing, great, but I can't afford to losing my hearing and my job at the same time. Personally, I am not convinced that radiation is the best long-term solution for me. I wish someone could tell me that there is long-term data regarding radiation and hearing preservation for NF2 patients , but I have not found that doctor. My brother also was diagnosed this last year, and he has chosen to have radiation in Portland, OR Emanuel Hospital Novalis Info Unfortunately, there seem to be no great solutions at this time. <img border="0" title="" alt="[Frown]" src="frown.gif" />
I would also suggest that you join the NF2 Crew group (on Yahoo). This is a group of people who have NF2. Post any question you like, and folks will answer with their personal experience, or direct you to information regarding your question. I have found them to be extremely willing to help with regards to treatment options, and generally dealing with NF2. There are people in the group who have dealt with these questions for much longer than I. Best wishes to you. If I can help in any way, please let me know.

Jeff
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