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From Brazil to Staten Island
Roberto Procopio's Story

French   |  Portuguese

My name is Roberto Procopio. I was born and live in Sao Paulo, Brazil. I am 46 years old and married to a wonderful woman and have a 22 years old son. I work as a salesman in the software business.

I was AN diagnosed in the beginning of September 98, after an onset of severe balance problems and a lot of pressure in the back of my skull. Tinnitus, almost unnoticed for the last 8 years, began to bother me a lot, too. Other symptoms were a mild hearing decrease in the affected left ear and some dizziness/sickness. Never before had I heard of Acoustic Neuroma, and I was not really shocked when my physician said that I had a tumor in the ear. My tumor was 2.0 cm at the time of the MRI and pressing the brain stem. Also, I did not have facial skin sensation, due to the trigeminial nerve affected.

I got the news on Friday, and Monday I was leaving for Frankfurt, for the famous Book Fair. There I went, feeling nothing except that I had something big to settle when I was back to Brazil. Back again to Sao Paulo one week later I had consultations with more than 6 doctors, each one of them saying "do not worry, but you are going to lose hearing in your affected ear, and very probably have facial paralysis". How could I not worry? Sure, they did not even mention radiosurgery.

I talked to my brother, who is a physician, and informed him what I had. He became very preoccupied about the situation and said: "Don't worry, I will help you, and we are going to find the best way to make things good for you". We became heavy internet researchers and discarded both Gamma Knife and open surgery, given some sequels associated with them.

We began to concentrate on FSR, a type of radio treatment that reported almost no problems associated with the treatment, and was done in few places in the USA. I have chosen Staten Island University Hospital, because the hospital provided me with all the information I needed - even a videotape - and because Dr. Gil Lederman, who is responsible for the Radiosurgery unit, seemed to me the best guy in the world to radiate my brain. How to explain that? I do not know. But I was sure I was right.

I do not want to induce anyone into FSR treatment, but I am only saying that it was the right treatment for me, fun included.  So I went to Staten Island in the end of November 98 - in fact a borough of New York City - with wife and sister, and we all had a great time there. We went to the Mall, to a very nice place at Staten Island  called Richmond, strolled in the Central Park, some very nice Italian restaurants with some very nice people working there, etc...

The only bad things that I felt during my 2 weeks stay there was fatigue and sleepiness after the every-other-day treatments.

It has been more than 3 months since I went back to Brazil. I am feeling sometimes better, sometimes the same as before, but never worse. I am sure that I got what I was looking for, that is, to preserve my hearing and to avoid a great risk of facial paralysis. I still work as a salesman, and in fact I am working much more than before the AN presented itself. 

After all I and my family have been through, I have learned to be more patient with things, to listen more to other people, to visit and enjoy my relatives more than I did, to have some more fun at work, and not to put myself always in the condition of the savior of the world. I feel happier now and learned a lot from my AN experience. Yes, to summarize, life is better than before. Would it be the same if I have chosen another type of treatment? Only God knows the answer.

If I can be of any help, please, feel free to phone or e-mail me in Brazil, a big country with friendly people. My home phone number is +55 11 846-9389. My business e-mail is procopio@dtslatin.com. Home e-mail is roberto_procopio@uol.com.br

Best to everybody,

Roberto Procopio Ferraz <roberto_procopio AT uol.com.br>
Brazil
April 1999


Updates

(7/99) I'm better than ever. Sure, sometimes I feel dizzy, a lot of imbalance, pressure in the skull, etc... but I can assure you that my life is the same as before, and may be better, cause I am more focused now than I was before the AN news. I have just managed the release of a specialized software catalog, the biggest in Latin America, targeted to 100,000 system developers. My private life also seems to be better than before, enjoying more wife and son and family.

(9/03) This next December it will be 5 years since my radiation treatment at SIUH with Dr.Gil Lederman. Everything was going fine and the tumor had appeared to have cessation of growth, but some 3 months ago I began to develop some very strong headaches at night and they varied in intensity and in quality. Also, I began to feel urinary urgency, rushing to the bathroom and later, nocturnal urinary incontinence, which was something that put me down a bit. I got back to my neurologist who recommended that I had an analisys of the liquid and other tests, such as lumbar puncture, etc... The outcome was that I had NPH (normal pressure hydrocephalus) which is associated in some case to FSR procedures, and something I was well alerted of by the excellent Dr. Gil Lederman. As a result of the diagnosis, I had to have a shunt placed in my head, thus diverting the liquid of the brain to the peritonium, then relieving the pressure inside the skull. After the operation, I got out of the hospital in 2 days and I am doing fine.  With the benefit of hindsight, I can say that I don't regret my decision for FSR and think that had I opted for the open skull procedure I would have also some problems.

Roberto P.Ferraz, 
Brazil

         

Last Edited: Wednesday, November 19, 2003