old, with three tumors
"Deaf" means the person hears NOTHING in either ear... I am not deaf, but had I chosen to follow the orders of every surgeon in 1998, I would be.
It all began in June 1997. I was 16 years old and having some problems (mild hearing loss, inability to walk a balance beam in gym class, the usual). My very first MRI shocked us all. I always guessed there would be a tumor, given that NF2 is hereditary... but no way was I prepared to discover I had, not one tumor, but three!!! A large meningioma was removed from my optic nerve in July 1997 with no complications. Then I was "prepared" to face acoustic neuroma surgery on the right side...
Acoustic neuroma surgery was the most horrible ordeal I have ever been through and hope will be the last such ordeal. I checked in to the hospital, got drugged up, and had a neurosurgeon drill my skull open, remove the tumor, chopping my acoustic nerve in half in the process, suture it all shut (I call them staples :), and then sent me home to slowly recover while experiencing headaches and the like for the next few months, if not a year or more.
I know there are some people out there who were very lucky and came through the surgery with flying colors. Not me though. I lost all hearing on the affected side and my face is paralyzed so that my right eye WILL NOT open. [And as if that wasn't bad enough, 1.5 years later, the pesky thing grew back and it ended up getting treated with radiosurgery at Staten Island anyway.]
In Summer of 1998, it was time to remove the second acoustic neuroma on the second side. Well these doctors... I had the opinions of about four different all-too-eager neurosurgeons. I was a candidate for a cochlear implant and an auditory brainstem implant (ABI) to help me if I became deaf, and I was guaranteed there would be no facial paralysis this time. [Since when are these things possible to know until after the surgery?].
No one ever mentioned FSR or GK or anything... Well actually we did talk to a GK oncologist early on (I forget from where) and he basically told us the tumor was too large for GK and I needed surgery. We were also told by someone from House Ear that if I had radiation, it would KILL my chances of being able to get an ABI. Who cares though? If FSR saves my hearing, I won't need an ABI! They don't get that.
To shorten this a bit, I would have rather been dead than deaf. So I went online and did oodles of research and by some miracle I discovered this cleverely hidden article (hidden by the search engines apparently; it's a conspiracy!) written by Dr. Gil Lederman at Staten Island University Hospital. I have never been so thrilled in my life as I was when I read that there was a good possibility I could keep my hearing and balance. Maybe even improve them. Dr. Lederman was my ray of light in the dark cave.
I went to Staten Island for radiosurgery for a number of reasons. To name a couple:
(1) to preserve the hearing I had left, [for whose deterioration we have no one to thank except the neurosurgeons themselves who obviously must have thought they would temporarily improve my quality of life by prolonging the amount of time I could retain my useful hearing, and by putting off the inevitable and waiting until the tumor was so gigantic, I would have no choice but to either die, or let a surgeon remove it],
(2) to prevent facial paralysis on the other side too.
The treatment at SIUH was a piece of cake. I lay on the table, machine moves around, I feel nothing. Less than ten minutes later I am in the car riding home. Jeez I have had dental visits and hearing tests before that were more uncomfortable than this. That's to say nothing of AN surgery...
I lost no more hearing or balance from the FSR treatment and today (2.5 years later), honest I feel really good. My current hearing problem is because even though the tumor is dead and not growing, it is "still there". So now just imagine a properly-operating acoustic nerve carrying sound messages from one's ear to one's brain and then imagine such a nerve being squished by a large, benign, dead tumor and you'll see why I do indeed hear sounds (the nerve is still there and works), but why everything logically gets distorted (by a tumor in the way) somewhere between my ear and my brain (why I am "speech indiscriminant," but not deaf). Thus it's simple to see why with everything sounding exactly like a dog barking, my 4-legged furry kids Buddy and Skippy are best understood by me ;) But I do hear them (a "deaf" person would not...) For the record, the only way my speech discrimination would improve is if the tumor were to shrink, and in the process not push the nerve out of its way so much...
I have not for one minute of one day in the past nearly 3 years regretted my decision to go to Staten Island in October 1998 instead of NYC or LA. What I can't stand about the entire situation, though, is there is not one conventional doctor in this entire galaxy who isn't appalled that we chose the approach we did over traditional surgery. And look where surgery on the other side got me: clinically deaf in one ear, permanent facial paralysis, eye problems, a lateral tarsorrhaphy by my optometrist, etc etc.
And the stupid thing grew back anyway! In May 2000, the right AN (the one removed surgically in 1997) started to regrow but thankfully it was nothing to Dr. Lederman and he treated it with FSR immediately. Now why didn't I just go there the first time around??
Silly me believing everything the first general practitioner uttered as the "truth." The fact is, no one is totally up to date on ALL treatment options. Each case is different and I personally recommend that each patient do lots of research and get opinions from providers of several DIFFERENT treatments. Then and only then decide, what's best for you.
Grace E. Foote <imflying71059 AT hotmail.com>
Last Edited: Friday, November 22, 2002