Neurinoma

Someone told me all the ANers remember when they first noticed this buzzing, which is in fact the most remarkable sign of an acoustic neuroma. As I had worked at noisy factories, I thought that maybe it could be associated to some hearing trauma. It also got totally unnoticed for some time a difficulty to stand in a perfecly vertical position, something compensated by almost unnoticeable body movements, which prevented me to hit the ground. Slight head movements, and a weird way of walking, most specially small corridors, became unnoticed as well. An almost ever present sickness also got little attention from me. As I said, none of these symptons took me me to the GP. As normally happens with ANers, I came to know I had a left sided AN, 2,5cm big and pressing the brain stem, trough a routine checkup, with no relation whatsoever to the AN symptons I was already feeling at the time. I remember quite well the day I got the news: I had passed unscathed all the previous medical examinations, and everything was running smooth when almost at the end of the consultation, the doctor said something was wrong in one computerized tomography film: " We have some problem here", he said. "Some lesion in your left ear, one neurinoma". I immediately thougth that if it was related to hearing it shoud not be so important. Big mistake: in fact, this type of tumor, by affecting some very important cranial nerves, is classified as a brain tumor, with an incidence of 1 per 100.000 inhabitants, representing 7% of all types of brain tumors.
It is a lottery in reverse. The GP explained me what he knew about the lesion, not saying if it was malignant or not. So, in a nutshell, I got the news I had an important skull tumor. It was Friday late afternoon and I had tickets on my hand for a business trip to Germany next Monday. I felt right away that somehow my life would change altogether from this moment on, but I did not bother myself too much at the moment. Later, I came to elaborate better on this, thinking that the whole thing should be not so good at all. I didn't sleep well that night, but said nothing to my wife and son.
As I have a brother who specialized himself in internal medicine and in very difficult diagnosis, I phoned him and we met that Saturday later on, so he could check out the medical films. By his reaction I felt things were not really good, although I calmed down a bit after knowing the tumor was probably not malignant ( I had to review later my personnal point-of view on malignancy). After my brother's explanation it became clear to me that to surgically remove the tumor would be pretty much difficult, with very low mortality in the procedures but with a high degree of morbitity, which means a high degree of undesirable after effects. I came back home and explained the whole situation to my wife and son, who became devastated by the news. But we knew in that very moment that this was another challenge in our lives we would eventually overcome, as we did with many others in the past. The unshakable religious faith of my wife, and her prayers, helped me a lot trough the situation.
Since that day we began an excruciating process of changing our daily routine, with the acquired knowledge of what means to have at home somebody who doesnt hear well, does not recognize from where the sounds come from, has some balance problems, and does not tolerate sudden noises. To make things worse, some sleepless nights added some strain to the situation.
As planned, Monday I traveled to Germany, having already established contact with a lot of neurinoma specialists. A lot of neurosurgeons and neurotologists eager to open my skull , almost all of them, with little exception, with a contagious - and dangerous - optimism. If I were to follow them, I would never hear of the sequels commonly associated with the so-called microsurgery. Except in one case, not one mention of radiosurgery, not even GammaKnife, a radiosurgery procedure year lights behind FSR . Afterwards, I began to understand that the so-called microsurgery was in fact a potentially misleading term, and the word "micro" was not at all associated with some possible easiness of the surgery itself, but rather to the very small medical instruments commonly used in such type of procedure. As far as the neurosurgeons optimism, I think that it is due to the fact that such a kind of brave professionals always deal with highly difficult situations. If one is pessimistic in such a field, better change profession. But, why not telling all the options avaiable, in order the patient makes an informed decision?
Before I made my decision I talked to some (very nice) individuals who had been submitted to open skull surgery. I never felt myselt at ease with the idea of open skull surgery, but it is needless to say that what type of procedure to choose is an extremely personal decision, being each case different from the other, with a lot of variables to be put into the equation. Such kind of decision is untransferable, naturally causing a lot of anxiety in our minds : did I chose right or not? how would I feel if I had chosen the other treatment? Would I be better or not?
With a little help from my brother, I rearched the Internet for some alternatives to traditional surgery, and found Dr.Gil Lederman, the director of Radiation Oncology at Staten Island University Hospital (SIUH), in New York. At that time Dr.Lederman had already supervised radiation procedures in more than 140 acoustic neuroma patients from all regions of the world. Dr.Lederman is the brains behind a fractionated radiation procedure called FSR (Fractioned Stereotatic Radiation). I think now he lists more than 350 ANers treated with fractionation at SIUH. There was also as an option the laureated Johns Hopkins, in Baltmore, with a seemingly similar process as the one carried out at SIUH, but with a lower number of patients treated in comparaison with SIUH.
I opted for SIUH, who even sent me a videotape with the procedure, and quickly gave me the green light to go to the USA to undergo treatment. I also talked with one doctor who was the first Brazilian treated by Dr.Lederman some years ago and who totally recommend the FSR procedure. End November 1998, just two months after the tumor was detected, I began treament at Staten Island, after having sent the medical films (magnetic ressonance and hearing tests) for analisys. Before treatment, I had a prolonged conversation with Dr.Lederman, a gentleman and, in my opinion, a person eons ahead of our time. The kind of person who deserves a Nobel Prize. The procedure is quite simple from the patient's point of view butis quite sophisticated in terms of the technology employed: the Staten Island radiosurgery center lists some 15 nuclear physicistis, which shows the almost paranoid concern with the accuracy of the radiation shots.
The procedure goes like this: consultation with Dr.Lederman (2 or 3 hours), CAT-SCanning for the precise determination of the tri-dimensionality of the tumor, mouthpiece molding, so the patient's head can be fixed to the bed where the pinpoint precision shots are directed to, and then the radiation shots themselves, in alternate days, taking from 1 to 2 weeks or more, depending on the patient's choice for a more prolonged treatment, 5 being the maximum number of shots given at SIUH.
That is one very important point, cause exactly here resides the difference between the procedures done at SIUH and at Johns Hopkins, what generates an endless academic discussion between the two renowed institutions. In my judgement, both are equally prepared to perform the treatment, and I could have chosen treatment at Baltimore, with no hard feelings in my mind.
Despite the tension before and during treament, which is painless and in no way boring, I spent at Staten Island a pretty much good time, with my wife and sister. Those were in fact some of the best weeks I ever had in my whole life, seeing places and strolling in some very nice places. In fact, I got a little sick and drowsy, but I think this was related to the stress of the whole situation and not to the procedure itself. Dr.Lederman informed me of all the potential risks associated with the treatment and I rembember I got a bit paranoid on the 5% of hydrocephalus possibility he informed about, and which eventually, thanks God, never ocurred.
The bottom-line? When I decided to go the FSR way, I was not looking after a miraculous cure, 100% free of sequels and risks. What I was looking after was to stop the tumor growth. If unhindered, it represented a major peril to my life. Now I get back to the malignancy concept I referred to earlier. Today, and this is my particular point-of-view on this subject, I refer to the acoustic neuromas as malignant but non cancerous tumors, given the number of side-effects from the tumor itself and also from the procedure that the patient has to cope with for the rest of his/her life, specially when he/she underwents open skull surgery . I believe in my case the sequels would be bigger If I had opted for microsurgery.
At the fractionated procedure (FSR), after the shots, the tumor is still there, at the same place it has ever been (inside your skull) : after the bombardment, the tumors cells die, cause they generally are weaker than normal cells and the tumor stops growing or shrinks. This has to be continually mapped trough periodic magnetic ressonances exams, with gradually lower frequency. In my case, I know from the films I have been taken periodically that the tumor has neither grown nor shrunk. To each and everyone who think that radiosurgery is sequel-free, an alert: I still have to keep on living with the tumor all days. It keeps on bothering me night and day, trough the constant buzzing in the ear, trough the imbalance when I walk the streets and also for some poorly slept nights, though the intracranial pressure, etc..
From the tumor control point of view, and also my personal assessment, the FSR radiosurgery was a success, given the fact that the tumor has stopped growing, with no big deal in terms of sequels. To follow Dr.Lederman's office request, I do an MRI now once a year.
I firmly believe that I did the right thing to do in my case and that the tumor will not grow again. After all, I made my choice and am proud of it. I strongly advise all ANers not to be intimidated by doctors who does not discuss all the options available, and to only surrender themselves to procedures and professionals with whom they are comfortable with. This is the type of relationship I had and have with Dr.Lederman and with the neurologist who follows me up in Brazil.
To finalize, after what I call "the neurinoma experience", I feel I am more prepaired today to face the true challenges of life, ascribing value to really important things in life and not engaging myself in senseless power struggles, who only bear fruit to an ilusory ambition for power. Really don't know if this is something related to my aging process or the tumor, but I redirected all my professional activities, doing only what I like to do. I am more focused now and this helps a lot in the end. I think this tumor taught me a lot. I was helped by many, and would like to help anyone in the same situation I was 3 years ago.

Roberto

Notes of the Author of the Site:
I knew Roberto, through a friend of my mother, little after he have discovered his problem. Roberto was with his brother in my house and I shared mine experience with them. I´d would like to thank Roberto because it was the second person to write and to send your history to publish in the site and also by the participation in the development of the same. Roberto is helping me in the development of the section "Neurinoma of the Acoustic".
Roberto, I wish you SUCCESS in life, and that this experience has turned you a better person in everybody feels them than you was before.
A friend's great hug,

Bruno
If you want to contact Roberto please send e-mails for: robertoprocopio@yahoo.com