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Surgery not needed
Don's Story

I am 59.  On March 5, 1998 I was diagnosed with a 5mm Meningioma (very small). The first surgeon I was referred to explained the tumor and said it must come out of there and soon! I asked him about Radiosurgery and he said it is no option to even consider for a benign tumor.  I was scared and probably felt about the same as any newly diagnosed AN patient.

I started doing some research on the net and subscribed to the AN (Acoustic Neuroma) list server. As a result I sent my MRI to Dr. Lederman at Staten Island University Hospital. He said it is a Schwannoma, treatable by FSR. Sent MRI to Dr. Williams at John Hopkins Hospital. He said Meningioma, treatable by FSR or Microsurgery, but lets look at another MRI in about 3 months to see if it is growing or how much before making a decision on the type treatment. Dr. Williams said it has probably been there for years, maybe decades.

I decided to take Dr. Williams' advise and have another MRI in about 3 months to see if or how fast the tumor is growing before making a firm decision on treatment. I had the second MRI the 17th of June. It showed no signs of grows since the first MRI. Dr. Williams suggested another MRI in six months to be sure it is not growing...  If I had taken the first doctor's advice, I now would be recovering from a very long surgery that has many potential serious side effects that was not needed.

I have since found that Radiosurgery is the treatment I will choose if treatment is ever needed; if I had been diagnosed with a larger tumor that was close to the brainstem and/or optic nerve, I would have to take a totally different outlook on the situation, and my final decision would possibly be different.  I know that many people feel they want a permanent solution to their AN, and neither waiting nor radiosurgery qualify.  I have read of a number of cases that have had radiosurgery after microsurgery because of regrowth.  That is enough to give me doubt that surgery is a permanent solution. As far as the routine MRI, that's something I will look farward to in order to know that the tumor is not growing and I can go on with my life as usual.

So, ASK QUESTIONS and GET MORE THAN ONE OPINION!  I feel it not right to act on any doctor's advise of immediate treatment until one knows the facts regarding the size (5mm, very small), the location (not close to the brainstem), and the rate of growth.   As most of you know, Acoustic Neuromas and Meningiomas are normally slow growing tumors.   My tumor is not close to the brain stem and is causing only minor balance and hearing problem; I can live with both.

I hope this helps someone.

Don Guy <dguy4 AT cox.net>
July 8, 1998

Updates

(1/99) My 3rd (9 month) MRI shows that the tumor is still not growing. I am very thankful that I sent my first MRI to Dr. Williams at Johns Hopkins. As my story says, the other doctors wanted to operate or to radiosurgery right away. If you would like the names of the other doctors, e-mail me.

(1/01) My condition has not changed. No more MRIs and enjoying life as usual. About the only time I think about the tumor is when someone ask me about it.

(11/02) I had another MRI a few weeks ago and the tumor still shows no sign of further growth. I thank God that their are still doctors like Dr. Williams and that I sent my first MRI film to him for his opinion.

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Last Edited: Friday, November 22, 2002