I still remember my mother almost had a “nervous breakdown” after one of the neurologists who was treating me decided to forward me to an otorhinolaryngologist. It was by that time that I got to know an extraordinary doctor and friend - Doctor Ney Penteado de Castro. Besides being an otorhino, his children studied at the same school where I studied. In our first appointment, he soon noticed that there was something compressing the facial nerve and that the problem was in the middle ear. He asked me to take some exams as soon as possible. Some days after, I was admitted to Hospital Osvaldo Cruz to undergo a surgery in November 1987. It was a real success !!! The surgery took long – six hours in the surgery center and a couple of hours in the ICU (intensive care unit). After the surgery, my facial paralysis had been reduced. But even after this surgery, the diagnosis was not clear. The only thing we knew for sure was that the doctor had removed a benign tumor and that during the removal it was necessary to take some bones from the middle ear – the malleus, the incus, and the stapes. I lost around 50% of my hearing from the right ear due to the bones’ removal. This is called a mechanical loss, according to the doctors, that is, it can be corrected by using an auditive equipment. Doctor Ney Penteado de Castro had already warned us about the eventual need of a second surgery in case of timpanic contraction.

See below my photographs at school:

 

  

  

After a few days, my face had been 90% back to normal. I was feeling great and led my normal teenager life.

Around three years after the surgery, in November 1990, I started having strange sensations in my right ear. It was then that Doctor Ney decided to submit me to another surgery to rebuild the eardrum (tympanic membrane), the malleus, the incus, and the stapes. The surgery went on very well but my hearing remained the same. There was no hearing enhancement on the right side.

After the first alarm and with no accurate diagnosis of the problem, I led my normal life, with constant but spaced follow-ups.

I’ve changed schools three times, I started dating, I went to college to study Administration, I started working and I had my first car. The problem had been left in the past !!!

Ten years or so had gone by since the first surgery performed by Doctor Ney. I was in my third year at college, with a great job, when suddenly I was taken by surprise! My parents were traveling and I started feeling a hearing loss in my left ear; I could barely understand what people said. It was as if the ear had been obstructed. My brother and I had an appointment with Doctor Ney and asked him to evaluate the case. He immediately said: “Bruno, the problem is in the inner ear. I’ll give you a medicine to try to recover your hearing; I cannot guarantee this, but let’s be positive ! He prescribed a medicine with cortisone and asked me to take many exams in an attempt to diagnose the problem. Ladies and gentlemen, in three or four days I had recovered my hearing !!!

I led a normal life even though I could not actually understand what happened. I decided to wait for my parents to come back so that we could talk and proceed with the necessary exams. At that time, I was 20 years old. The magnetic resonance exam performed in August 1997 detected the presence of Bilateral Acoustic Neuroma. It was not easy to receive this news because we knew there were a few chances of preserving my hearing. When diagnosing the Acoustic Neuroma, Doctor Ney told us about a researcher specialized in this area and suggested us to look for more information about Doctor Antônio De La Cruz, a practitioner who worked in Los Angeles and had a long experience with this kind of problem. Doctor Ney also told us that he could give us no further help on that because he was not a specialist in that area. At the time of the diagnosis of the Acoustic Neuromas, they measured approximately 5 mm on the right side and 7 mm on the left side. So, they were quite small. We’ve contacted some doctors who had different points of view on the issue. Some of them believed that the best option was to wait in observation; others considered the surgery as the best solution because the tumors were considerably small and there was a chance of preserving my hearing.

During this long journey, we’ve talked to otorhinos and neurosurgeons, thus perceiving that there was a kind of competition between specialists from these two different medical areas.

Many questions were running through my mind, such as: Who would be the most appropriate specialist for this kind of treatment ?; What would be the real chances of preserving my facial and auditive nerves ? What would be the surgery risks ? What would be the less aggressive kind of surgery ? Among these uncountable questions I found out some important things that you’ve got to know. The Acoustic Neuroma surgeries can be performed by the otorhino and the neurosurgeon who work together.

The chances of preserving the nerves surrounded by the tumor will depend on the medical team experience in this kind of surgery and also on the intra-operatory equipment for monitoring the facial and the auditive nerves. Well... And who would have both in Brazil? It was then that I decided to talk about my case with my friend and neighbor, a doctor called Dr.Pedro Mangabeira, an excellent otorhino who has a depth knowledge of the subject. I had already been informed about several statistics and the chances of preserving the hearing in Brazil were around 35 %. Since I had the problem in both ears and would have to undergo two surgeries, preserving my hearing was vital. When I went to talk to Dr. Mangabeira about the possibility of being treated out of Brazil, I already had a list of experienced doctors abroad. Dr. Mangabeira gave me the same suggestion as Dr.Ney: try to contact Dr.Antônio De La Cruz. So I sent my exams to Dr.Samii in Germany and to Dr. De La Cruz in the United States. Both gave me a feedback suggesting different procedures and communicating that, in my case, the chances of preserving the auditive nerve were around 70%. We were at a loss what to do. So I decided to know him in person to be able to make a decision. It was then that I got to know that Dr.De La Cruz was coming to Brazil to make a speech in a medical conference in Rio de Janeiro. We printed his photograph from the Internet and headed to Rio. It was great ! Doctor De La Cruz took us to the convention center to show us some slides. He said:

-         It is an easy procedure! These are the real chances you have in saving your hearing. You’re young and the surgeries are simple. The post-surgery is very quick because your age a beneficial factor.

He also told me that they used intra-operatory monitors in the nerves. In case the removal was difficult, he would perform only one nerve decompression and this would allow me to hear for some years ahead. The surgery would be performed by a professional team and the otorhino (in this case, he himself) would access the tumor and the neurosurgeon would be responsible for the removal itself.

In Brazil, no doctor had ever told me about this possibility and everything he said sounded absolutely coherent. I went back home and kept thinking. Together with my parents, I decided to wait a bit more. In case the tumor had grown, I would contact Dr.De La Cruz. On that same night, I went out with a girlfriend and she asked me if I had made up my mind. I told her about my decision and she was indignant:

-         Bruno, you are letting your emotion speak for you. You should behave rationally. If you just stop and think that this can be your opportunity to get rid of this problem and get on with your normal life ! Take the opportunity that God has given to you. Today you have the financial conditions to undergo such a treatment. You don’t know what may happen in the future.

I kept thinking and .... when arriving home I asked my parents to settle a date for the two surgeries because I would undergo them on my college vacation to avoid losing classes. My parents did so, I finished my studies, quit my job and went to the U.S. to undergo the surgeries in February 1998. Doctor De La Cruz worked in such a wonderful site ! The clinic is called House Ear Clinic and is located in Los Angeles. When arriving there I was surprised at the naturality with which they treated my case. I thought it was much more serious but the way they dealt with it sounded as if it was actually an ordinary problem. I was submitted to a catholic hospital called St.Vicent Hospital. It has one floor exclusively used by the House Ear Clinic for this kind of surgery. It’s an extremely simple hospital. The team performed the surgery and I almost didn’t have contact with Dr.De La Cruz. The surgery took around two hours and a half and I remained for two days in the ICU, and another three days in a hospital room. This surgery involved my right ear, the one in which hearing had already been affected. Complete success ! The surgery was performed through an access called middle fossa approach and a tiny part of fat was taken from my abdomen to put in the place where the tumor had been removed. I woke up with a facial paralysis. After all, this was the second time that my facial nerve had been manipulated, right ?! My hearing was totally preserved and the tumor was completely removed. I’ve been through a hard time in the ICU because of the multiple equipment and catheters attached to me, which made me feel uncomfortable; nevertheless, I had no pain, no dizziness nor nausea. The only different sensation that I can recall were some crack sounds on the ear in which the surgery was performed. I asked if my parents could stay with me in the ICU and they were given the permission to stay. This helped me a lot in my recovery. I had a terrific recovery and two weeks after the surgery I was back to Brazil.

See below my photographs six days after the surgery:

  

I had started my facial physiotherapy and was gradually recovering from the paralysis. Six months after the surgery, I was ready for the second stage. The second surgery took place in July 1998 and I was more worried because the doctors would be manipulating my left ear, the only one which had not been affected at all.

I remember that it was the period of the World Cup. This time, besides my parents, my brother and my girlfriend also went with me ! All the surgery procedures were very similar to the first one; the main advantage was that all doctors and nurses already knew me, which made my hospital stay a more enjoyable experience. I have a clear picture of the doctor who was responsible for monitoring the nerves during the surgery: his name was Dr.Alan Senne, he was a very charismatic person and he loved sports. I met Alan in my first appointment at the House Ear Clinic. He performed my audiometry. I still remember him walking in crutches because he had hurt his leg.

After the success of the first surgery in which my hearing had been preserved, when I went to the U.S. for the second surgery, I immediately asked about Alan because I’d like to know if he would be monitoring my second surgery. To my surprise, the answer was No ! Alan was monitoring some other surgeries on that same day and on the following day (the day scheduled for my surgery) he would be on vacation. I was really bored and I asked to leave a message in his answering machine saying that I’d be really glad to have him monitoring my surgery. When I was entering the surgery center, I saw Alan running with an enormous computer. He said:

- Bruno, I came just to monitor your surgery and then I’m going on vacation. Keep calm, everything is going to be all right.

As Alain said, everything went on perfectly well !! It was a total success again - auditive and facial nerves preserved, tumor completely removed !! When I woke up at the ICU, guess who was there by my side ?! Alan himself !! He had already seen my family and they were waiting to see me. Alain said:

- Bruno, everything went all right and we could preserve your nerves. Now I’ve got to go. I’d only like to leave a message: Always thank God for having a wonderful family as yours by your side, giving you strength and care. May God always bless you.

It was great to hear that from him !! I still get touched when I remember it and write about it !

The recovery in both surgeries was alike. But this time there was only one inconvenience: when I started walking and touched the floor with the tip of my feet, all my body ached. It took me a while to be able to walk normally, but they explained the reason, which I don’t remember exactly. I think it was related to the blood present in the liquid that flows from the brain to the spine. I knew it was normal and soon it would be over. And it was !

In this second surgery, I decided to buy a radio control car to assemble during my stay in hospital. This was great. It was a kind of therapy.

Another important aspect that should be mentioned and that helped me a lot in my recovery process was the presence of a spiritual support. A priest called Francisco Ayala (nowadays a friend who lives in Honduras) was present in my two admittances to hospital do undergo the surgeries. He prayed with me every day, even in the ICU.

See below my photographs six days after the surgery:

 

In all phases of my life, my family has always played an important role that helped me overcome all obstacles in such a positive way. I believe positive thinking is fundamental for us to overcome difficulties. We need to believe that everything is going to be fine, that the world can be better, that we can be happier, that we can make all our dreams come true, and so on.

I almost forgot to talk about NF ! I was told I had a rare disease called Neurofibromatose Type 2 in the U.S. by Dr .Antônio De La Cruz. Some doctors from Brazil had already thought about it as a hypothesis but... it was Dr.De La Cruz who confirmed the diagnosis. I’ve always been told about this disease in a natural way, as if NF2 were not such a big deal . The doctor told me that from now on I should also monitor my spine because other benign tumors could appear. I’ve always been told that the NF progression was slow and that I should only monitor. Now with a better knowledge on the subject, I know that only 1/3 of the cases are critical, the other 2/3 are manifested in a smoother way. (but they may have some complications as well!)

After returning to Brazil, I restarted my activities. In October 1999, I had a strong abdominal pain and was admitted to Hospital Israelita Albert Einstein. Through a magnetic resonance in the spine, we confirmed the NF2 diagnosis. There were two calcified meningiomas with no risk of a further development. I should just take medicine for pain and go back home. After NF2 diagnosis, I started taking annual exams as a follow-up.

Since I was back to Brazil, it was time to think about my life. What was I going to do? In which kind of job should I work? Which of my own values should be preserved? Which ones should be changed ? These questions kept running through my mind and the only thing I knew for sure was that I would never turn small obstacles that life presents us with in big issues. After all, I could not concentrate on this anymore since I was more interested in living and taking advantage of each second of my life.

Who has never asked himself/herself: What am I doing on Earth ? What is my mission ? I’m sure many of you have asked this question but... just a few have looked for answers. I’ve made up my mind to look for them !!!!!

Since I came back from the surgeries, my world vision has changed and I started taking a more active part in my church and in other praying groups. It was then that I decided to look for a work that meant something other than money. It took me some months to find a volunteering work in which I could be side by side with people who needed some care and could not find this at home. I started two projects. The first project was inside a public school, trying to help enhance the school computer lab and its library. The second is the website www.neurinoma.com.br .

I believed it was my duty to give back to society part of what had been given to me. Since I had been through so many questions and a lack of accurate information in Brazil as regards the acoustic neuroma, I should look for more information abroad and make it available to those people who could not afford it in my country.

As time went by, I started planning my site, building each section, searching for contents in the internet and, finally, when everything was ready, I decided to launch the project.

What about my work with that public school ?! Well, I’ve spent one year there and then I had to leave in search of my true mission.

When I started searching about NF2, I found a site from Neurofibromatosis National Center containing some non-comprehensive information. I’ve made a contact with Elane (the CEO from Neurofibromatosis National Center) asking for help in announcing my site and she asked me why I was not involved in some kind of work oriented to Neurofibromatosis. I couldn’t get that out of my mind. As time went by, my girlfriend talked to me about a conference she had attended and whose speaker was a lady called Leide, who had a Master degree in Neurofibromatosis. By coincidence, this lady was married to one of my girlfriend’s teachers. Thus, my girlfriend could get some telephone numbers for me to make a contact with Leide and ask for help as to NF2 section content in my site. Leide has defended her Master thesis on Neurofibromatosis on the same day of my birthday and immediately after we’ve met to validate the contents together. In the middle of our talk, we had the idea of creating a specific work for Neurofibromatosis patients and their families. After all, Leide had already been in Neurofibromatosis National Center and had showed interest for the work. So we decided to start a project to create an association which presently is called Associação de Neurofibromatose (www.nf.org.br). This work now has become part of my life.

Four years after the surgeries performed in Los Angeles, the follow-up magnetic resonance exams started indicating some evolution of the acoustic neuromas that had already been removed. In fact, the acoustic neuroma was only visible on the right side; there were still controversies around its presence on the left side. We should make it clear that the chances of an acoustic neuroma reappearing and evolving in non-NF2 patients are very low; literature reports around 2%. But in NF2 cases there are no statistics. As years passed by, I found out that in most NF2 cases, the neuroma which had been previously treated regrow.

What does really happen? If only one tumor cell is still present, tumor can be formed again. As the acoustic neuromas of NF2 patients are usually more scattered between the nerves, the chance of finding just one tiny cell here is much greater than finding the acoustic neuroma in non-NF2 patients.

At this point, I was getting worried. I had already imagined a possibility of never being deaf. Now I had to accept the idea that one day this could be a reality. The treatments for acoustic neuroma in NF2 patients so far are a big challenge for medicine. It’s not an easy task to be able to choose the best way to manage the situation, and both doctor and patient should make the decision together.

After a monitoring that took more than six months and since the tumor was growing (around 1.5 cm), in August 2001 I had to make another decision about the best way to intervene. As we have witnessed such a progress in medicine in the last years, one of the ventured hypotheses was the use of radiation to control the tumor growth. There was still great discussion around the issue because medicine literature has shown chances of malign tumors. Despite the different opinions among professionals from the medicine field, I decided to make a research about the subject to better understand it. Since I knew the risks involved in a conventional surgery and that there were almost no chances of preserving hearing in a new surgery, I decided to look for a method that could at least control for some years my tumor progress and that could give me some chance of preserving my hearing.

After a careful analysis of the different options, Doctor Mangabeira and I chose the treatment called Fractionated Stereotactic Radiosurgery (FRS). I have looked for treatment centers with experience in Acoustic Neuroma in Brazil, but they had never treated someone with NF2. So I looked for the most experienced centers in the U.S. On one hand, some friends had already been successfully treated in the Staten Island University Hospital and helped me to contact the professional in charge, Doctor Gil Lederman. On the other hand, I was willing to be treated in John Hoppinks Hospital with Doctor Jaffery Willians. The major difference between these two centers were the applied radiation dose and the number of sessions.

We sent the exams to both and also to Doctor Ladislau Stainer who used the Gamma Knife in the treatment. My doctors and I concluded that FSR was the most suitable treatment for my case. Doctor Gil Lederman was more open in the negotiation and showed interest in helping me and also in my specific case.

I asked for a 15-day-on leave period at work and headed for Staten Island – NY, in March 2002. This time I went with my brother to stay there during the treatment. Doctor Lederman took care of everything, including lodging next to the hospital for budget reasons. Doctor Lederman himself hosted us. He is a very charismatic person who really believes in this kind of treatment. First of all, he asked me to take a new MRI to identify the current size of the tumor. The MRI showed that the tumor measured around 2.5 cm. So it was time for action.

I started the treatment on the following week, which consisted of five sessions every other day. Dr.Lederman used the lowest radiation dose ever applied in the world for this kind of treatment. The treatment went on very smoothly, the sessions were very fast (around 5-10 minutes) and the table mounting was very comfortable (during the sessions, the table was moved in different positions).

After the treatment, I felt a little tired and a slight headache. May be it was the treatment itself or the fact that my body had not been adapted yet to the different time zone.

Fifteen days later I was back to Brazil. I was really lucky to have had my brother all the time on my side to talk to me and enjoy the trip. It was actually very cold and this made me feel like not leaving the hotel. Since money was short, we could not rent a car and had to do everything on foot or by taxi. We went sometimes to Manhattan - NY for a ride in the city. It was not a beautiful scenery because the September 11th terrorist attacks had happened some months before and the firemen were still working there. But it was worth going there and knowing one more city.

I took the advantage of my stay to visit the CEO of The National Neurofibromatosis Foudation, Inc., a nice man called Peter Bellermann, who gave me many tips for my work at the Brazilian Neurofibromatosis Association (Associação de Neurofibromatose).

See below my photos with Peter:

 

During the first and second post-treatment control exams, six months and one year after the treatment, respectively, the tumor already showed some black points and was under control. I had a slight hearing reduction on the treated ear, but just in some hearing frequencies and my facial nerve hadn’t presented problems so far.

This is my acoustic neurinoma before the radiosurgery :

     

See below my photographs during the Radiosurgery and the SIUH treatments:

  

 

At present, I have a normal life, I work and I’m constantly monitoring my health. In my free time, I try to pass on what I’ve learnt from my own experience to other people and this makes me feel good.

I graduated in Administration. Then, I started an MBA in Marketing, which I gave up to concentrate on another area. I finished a post-graduation course in the Third Sector Organization Administration and nowadays I’m taking my second post-graduation in Social Responsibility and the Third Sector.

I dare to say that now I’m much happier than before diagnosing the problem because I’ve found a reason to live !!!! Have you found yours ?!

I'd like to thank Márcia Nascente to translate my history from Portuguese into English.

Well, this is my history and I hope I can help you some way.

For any further information that you may not find in my web site, please contact me.

God bless you all,

Bruno Rebouças Tamassia

Site : www.neurinoma.com.br

nf2@neurinoma.com.br

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