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REVELATION ON THE INTERNET
Mike Boudreaux's story

My name is Mike Boudreaux and I am 47 going on 37. I was diagnosed on August 14, 1998 with an acoustic Neuroma. My MRI indicated a size of 2 cm. Originally from the Mississippi Gulf Coast and New Orleans, I currently live in Tulsa, Oklahoma working as President of an Advertising Company. I have always lived a very active life style including aggressive physical activities. I am rarely sick and was dumbfounded by my diagnosis. I can be reached by e-mail at mboudre981@aol.com or by telephone at 1-918-746-7000. I will be more than happy to discuss what I have been through and what I have learned. The following in a narrative of my story.

IN THE BEGINNING, NO ONE KNOWS, ESPECIALLY MY DOCTOR

Approximately 1 1/2 year ago, I noticed a ringing in my left ear and slight stuffiness in the same ear. I attributed it to swimmer's ear having developed an earache several weeks earlier while swimming. After a few weeks of the "fullness," I visited my doctor, a GP under an HMO program. He informed me I had a sinus infection and prescribed sinus medication. He stated that the ringing was "Tennitus" and was common in many people, was not dangerous as much as it was bothersome and was untreatable. Approximately 3 months later, the ringing was still there and the stuffiness in the ear was increasing. I returned to the GP and he prescribed a stronger sinus pill. About 3 months later the loss of hearing was more noticeable and I sensed slight dizziness in quick movements. When returning to my GP, he prescribed Meclezine for the dizziness, ringing of the ear and continued sinus infection. On August 5, 1998, I returned to the GP and asked him not to treat me but to refer me to a specialist (the HMO required me to follow the proper channels. I have since switched to a PPO). By this time, all my internal instincts were telling me something much more serious was wrong with me.

FINALLY, THE "REAL" TRUTH

I visited an ENT specialist on August 12, 1998 and received a hearing test which indicated I had nerve problems associated with the hearing. The specialist recommended an MRI which I got on the 14th of August 1998. The results were available on the following Monday, however both the GP and the ENT Doctor were not available to discuss the results. The hospital provided me with the Radiologist report which indicated an "Acoustic Swannoma," something I had never heard of in my life.

Although I knew something serious was wrong with me, I was flabbergasted at the magnitude of my very personal problem. I took it upon myself to begin my research on the Internet where I found a great deal of information. One of my first stops was at the Acoustic Neuroma Association which literally scared me to death. I truly felt I was looking at the end of the quality of life as I had known. The more I read the more depressed I became. I left my name and e-mail address for additional information to be sent to me and for correspondence from others.

FALSE PROPHETS OR UNKNOWING MEDICINE MEN?

I felt I had been betrayed by my GP and didn't really want to talk to him at this point. I felt that given a year, 4 "rushed" visits and the unmistakable symptoms, he being a "man of medicine" should have had a better knowledge of what I had. I talked to several friends in medicine including a couple of Radiologists who discussed surgery indepthly and what I could expect. They both assured me of the high rate of success in this type of invasive surgery. I called a friend in California who is a Plastic Surgeon. He knew what I had and referred me to a Dr. Brackman, in Los Angeles at the "House Clinic". He stated that Dr. Brackman was probably the best in the world for the type of surgery I would need and incidentally, he stated I needed it immediately as it could be life threatening.

I talked to Dr. Brackman the next day and without seeing my MRI film, he indicated that I would need surgery immediately and should accept the fact that I would be losing all hearing in my left ear through the surgery and would probably lose the vestbular nerve as well. He described the "Translab" procedure indepthly which would be the route he would take although again, he had not as yet even seen my MRI film. He did not talk about alternatives of this surgery or what my quality of life would be afterwards. He stated that his success ratio was over 95%. At the time, I felt blessed just being able to talk to the "best" and was beginning to schedule by life accordingly.

AN INSPIRATION AND REVELATION ON THE INTERNET

On the 20th of August I received an e-mail from Dr. Dina Goldin. Dr. Goldin was very supportive and suggested I visit the Acoustic Neuroma Archives. If you look back at the visitor's section of the Archives a few days after that date, you will see a couple of statements of exclamation from me. I can only say again, What a revelation it was and how thankful I am that Dr. Goldin took enough time to "share the knowledge" with me and others.

After visiting the AN Archives, I really started digging into alternatives to invasive surgery and had pretty much made up my mind I was not going to have surgery.

THE ALTERNATIVE SEARCH BEGINS

I began by learning all I could about Acoustic Neuromas, traditional treatments and advanced technology worldwide and the different types of Radiosurgery available. I started my own notebook(s) partitioned and filled with many topics from surgeons to hospitals to statistics. I had as much mailed to me as possible. I talked to many AN patients on the phone, but the majority through e-mail. {A common thread I found among most of us were (1) why me? and (2) a feeling of being scammed by our doctors} In my search I was looking for (1) The right surgeon and "Team" with keen knowledge of AN and statistics to back it up (2) An institution with State of the Art equipment in Radiosurgery (3) a combination of the team and the institution that looked at me, a human being as a priority and had the right "attitude".

Although I did place a great deal of consideration on these areas, I did not place a great deal of criteria on geographical location of the institution or expense of treatment. That is not to say that I could afford to travel extensively or afford a "brain surgery" of any kind. I do believe we all deserve the very best that this earth offers for the best quality of life regardless of the cost of such. No person should be denied any medical treatment because of the "cost" associated with it.

MY FIRST VISIT WITH A RENOWNED SURGEON

My friend, the plastic surgeon in Los Angeles, also arranged for Dr. Keith Black, the renowned Neurosurgeon with Cedars-Sinai, Los Angeles to talk to me and discuss my situation. After reviewing a very impressive web-page on Dr. Black and Cedars-Sinai, I called and spoke briefly with Dr. Black and discussed visiting with him. I asked if I could send my MRI film for him to review. He stated he would rather look at them when I could visit him.

Because of Dr. Black's unique background and "supposedly" strong belief in alternative medicine as opposed to invasive surgery, I decided to visit Cedars-Sinai and Dr. Black. I called and made an appointment for August 27, 1998. My appointment was at 2:00 p.m. at his office. I arrived a half hour early and was still waiting at 3:00. I was assured Dr. Black would be with me shortly. About 3:15, I was put in a visiting room where an associate of Dr. Black's visited with me and asked a barrage of questions concerning background and the typical medical needs. When I explained to her that I was there on a "fact-finding" mission about Dr. Black, she informed me he would be with me shortly.

Dr. Black entered the visiting room with 3 other associates. He introduced himself and began by explaining to me that I had an Acoustic Neuroma. He then stated explaining the methods of surgery. I abruptly stopped him and explained I was there strictly to talk about radiosurgery. The meeting ended with him directing me to the Radiology Department of Cedars-Sinai. My total visit with Dr. Black lasted maybe 5 minutes.

I must say that I did go to the Radiology Department and visited with Dr. Jay Tassin who was very informative and very courteous. He was the only bright spot in my visit.

I am sure that Dr. Black is as good a surgeon as I have read about him and has done a great deal towards the advancement in alternative medicine. Overall, I left Cedars-Sinai feeling I had wasted my time, had not been treated fairly, especially considering I had traveled halfway across the United States and left thinking Dr. Black needed to take course in common courtesy.

I vowed to do more research before visiting anyone else.

THE ALTERNATIVE FIELD NARROWS

After a great deal of further research, I narrowed my field to 4 locations. John Hopkins in Baltimore and Dr. Williams; Dr. Lunsford at Presbyterian, Pittsburgh: Dr. Lederman at SIUH, New York and The Gamma Knife Institute in Miami. I sent e-mail to all locations for information (among others not mentioned here). I sent copies of my MRI film to each with a complete write-up of my health history, background, symptoms etc.

I received immediate responses from John Hopkins in the form of a personal e-mail from Dr. Williams and a follow-up telephone call from Tami at his office. I received a letter from Dr. Lunsford stating I qualified and they would consider me subject to my insurance. I received a letter from The Gamma Knife Institute in Miami, some 3 weeks later stating the same thing. I did not receive anything from SIUH in the form of mail or e-mail.

Three weeks after leaving Cedars-Sinai, I decided I would visit John Hopkins and Dr. Williams. I called and made an appointment for September 24, 1998. A week prior to this, I received a package confirming my appointment with Dr. Williams detailing where I would go, how to get there and what to bring. I received a follow-up telephone call from Tami confirming. She told me I should also get a blood test done which would have to be done anyway and have it available if I decided to have my treatments done at John Hopkins. I had them done and forwarded to Dr. William's office.

My appointment was at 10:00 A.M. I arrived on time and was met in the Oncology department by an associate of Dr. Williams. I went into a visiting room where we discussed all aspects of Acoustic Neuromas. Dr. Williams came into the room within 15 minutes. He sat and visited with me for as long as it took. I asked many questions, some of which I already knew the answers. I talked about the FRS used there and how it differed from GK. Dr. Williams was very easy to talk to and he was very personable. He told me I had time and I should definitely do a great deal of research. If I decided to go with them, I could begin the preliminary treatment that same day.

By the time our visit was over I had decided to have my treatment at John Hopkins with Dr. Williams. They would begin my treatment that same day after lunch.

THE MASK AND THE CAT SCAN

After lunch, I begin by being given an iodine dye for a cat Scan. This involves a drip being placed in my arm and does not hurt at all. In addition, I am fitted for my "helmet" which will hold my head stationary during the Linear Arc Treatments. The mask looks like something between a hockey mask and something that looks like Jason's mask out of a Halloween movie. This mask has a mouthpiece attached to assure non-movement of the head. My head is in the mask during the Cat Scan and there are no ill effects. After the Cat Scan I visit briefly again with Dr. Williams and then travel to the airport and home. I feel very confident that I am doing the right thing.

A WEEK OF TREATMENTS OR A MINI VACATION!

My treatments are scheduled to begin on October 5th through the 9th, 1998. I begin by researching Hotel rooms for a week. I want something close to the hotel yet in close proximity to the famous Baltimore inner-harbour. I am optimistic that I will feel like some sightseeing during my stay. My research finds most hotels booked because of an impending convention. I am fortunate to find the Omni Hotel not only has rooms, but has special hospital discount rates. It is conveniently located for the hospital and the inner-harbour.

LET THE TREATMENTS BEGIN!!

I arrive in Baltimore on Sunday, October 4, 1998. I rent a car and drive to the Omni Hotel which is only about a 20 minute drive and an easy drive. After checking in, I get ready for the next day's treatments that I have been told by many will be no big deal.

On Monday Morning, I drive to John Hopkins where there is a great deal of construction going on. There are many parking garages and many detours. Thanks to the information given to me by Dr. Williams' staff, I know exactly where to go. I enter a garage next to the hospital and am directed to a special group of parking bays for the Oncology Department. If not for these, I would be looking for a parking bay for at least 15-20 minutes.

My first appointment is to begin at 12:00 and I arrive at the Oncology Department at 11:30. I have been told that the first day could take up to 4 hours. I do some preliminary paperwork and am given a "swipe card" that I will use every day thereafter to check in. I then go to a small waiting room that has a TV and courtesy coffee. At 12:00 promptly, I am directed to the same room where I received my Cat Scan. It is here that a final adjustment is made on my mask. This takes only a few minutes. I am then taken to the treatment room where the Linear Arc machine is waiting for me. The room looks like a relatively large room with high ceilings. I notice immediately the countryside picture of a bridge over a stream that has been painted on the ceiling directly above where I will be lying.

I am placed on an adjustable table with my head placed in a vice-like configuration that contains the back of my personal mask. Two radiology technicians begin the treatment by aligning my body and head in a certain position.

The technicians tell me they are going to take pictures first to make sure the alignment is correct. I must say that the "pictures" were the worst of the treatments. These had be taken everyday before the treatments. The pictures are 4 "jolts", two on top and two on the bottom. These are taken on the same Linear Arc Machine. Although I had my eyes closed, I could see the "blue" impulse of the top pictures and I could taste a metal like taste. The bottom pictures I could not feel or see. I actually dreaded the pictures.

While you are locked down and cannot move, you can see directly above you through the mesh-like mask. The picture on the ceiling may or may not be seen depending on which direction they have you moved. They do have a Cassette Player and will play any type of soothing music you wish. I chose Jazz. The only other noise you hear at this point is the door behind you somewhere opening and closing as the technicians come and go to move me or adjust the equipment. They tell me that if I need anything, they have 2 cameras on me and to just wave and they will be right in.

THE FIRST ZAP

The technicians tell me the "pictures" look good and they are now ready for the first treatments. After they leave the room I am anticipating something worse than the "picture" taking. I hear a short buzz, silence and then the steady drone of the arc as it moves in some direction around my head. There is no pain whatsoever. The drone last approximately 25 seconds. The technitians return in the room and move the table and adjust the arc. They leave the room and the next phase of the treatment begins. Again the buzz, the drone and the arc moving about my head. This procedure is repeated 4 more times. After the last, the technicians remove the clips holding in the top of my mask, I lift my head out of the bottom of my mask in the vice and I am now finished with my first of 5 treatments. The entire procedure on this first day took approximately 2 1/2 hours, much less than anticipated.

As I left the Hospital, I felt somewhat dizzy. I tried to self evaluate myself as to if it was the treatment or just me. Either way, I really felt okay. I leave and go to the inner-harbour for crabcakes, enjoyable. I spent the rest of the day resting. I did have slight headaches that afternoon, but a couple of aspirins took care of that. I watched Monday Night Football in Shula's at the hotel that night, went to sleep and got prepared for my next treatment at 9:00 the next morning. I had been told the next treatments should last no more than 1 hour daily.

THE SECOND ZAP

I arrive at the hospital at 8:45 and scan my card, and go to the waiting room. Promptly at 9:00, The technicians take me to the treatment room. Pictures first, same strong blue impulsing, same metal taste. Pictures look good again. Treatments start. Today the arcs move above my head some. I can see a slight blue line even though my eyes are closed. Nothing like the pictures though. I sense a slight heat but am not sure. No pain though. Five zaps today. I am in and out of the hospital in no more than 45 minutes.

Today, I am prepared to enjoy the day. I drive to Washington D.C. and become a tourist. I walked to the Washington Monument, The Lincoln Monument, The White House, The Smithsonian Museum of American and Natural History and The Holocaust Museum. A lot of walking to say the least. After the drive back that afternoon, I spend the evening in the room and order Chinese Food from a local restaurant that delivers. I watch TV and am finally ready to go to sleep and get ready for day three. I am anxious.

THE THIRD ZAP

Today is identical to day two. Same Pictures, ugh. Same buzz, same arc movement.

After the treatment today, I spend some time with Dr. Williams. He tells me everything is going very smoothly with no problems. I ask him about the "picture" taste which he says is common to some people. I visit about 15 minutes and am ready to go. He tells me he will not see me again unless I feel it necessary before I leave. I don't. He tells me he will need to see an MRI in 30 days to do my first evaluation. He will confirm my entire trip and the next step in a follow-up letter to me.

Today I decide to visit Mount Vernon and the historical side of Baltimore. A great deal of walking but I believe it to be beneficial. Crabcakes at O'Brickey's (overrated) and then back to the hotel to get ready for a night on the town. I hear of a good place above Ruth Chris' Steakhouse called The Havana Club. After enjoying the local scene, I retire to my room about 10:00 and am more than ready for day 4 wishing it was day 5.

THE FOURTH ZAP

Today is typical of day two and three except the treatments are longer today. Other than the time, everything goes smoothly again. Same pictures Ugh. I am in and out today in about 50 minutes. Today I am tired. It is raining and cool. I feel drained but attribute it to the daily tourist activities as opposed to the treatments. I go back to the room and nap for a few hours. I get a small workout that afternoon in the hotel workout room. I decide to enjoy a good steak and choose the Prime Rib. Great atmosphere, great wine, great steak. I thoroughly enjoy the evening but am ready to get the last zap over with.

THE LAST ZAP

On Friday Morning, I arrive early. I am eager to be through. The technicians are very accommodating as they know I want to go home. The treatments are a little longer today like Thursdays but the same pictures, ugh, etc. I am finished in 25 minutes. The staff I have seen everyday are as usually very nice and considerate. I thank them all and leave. Two hours later I have checked out of the hotel and am at the airport ready to leave.

I arrive in Tulsa and share the evening with friends who are amazed that I am not bald, not zapped, not drained and can actually stand. I feel somewhat guilty and do not share everything I had done while in Baltimore.

ME AND THE FUTURE

Today, I feel that if what I have been through with an Acoustic Neuroma is the worse that ever occurs to me physically, then I am very blessed. Although I know there is a very small chance of reoccurrence, I am very optimistic and have faith that advanced technology and advancement in medicine will outpace the possibility. I do not discount the initial feelings I had and will never forget that feeling. I am more compassionate to others who have more severe problems and especially those that have incurable cancer. I am more compassionate of life and what God gives us. I vow to take my health more seriously and to live a better life for myself and others.

Mike Boudreaux <mboudre981 AT aol.com>
12 October 1998

Editor's note:  this is a completely unsolicited story;  not a word was changed.


Update

July 1999. I have had two (2) MRIs since my FRS at John Hopkins on October 05, 1998. The last was about three (3) weeks ago. Dr. Williams called with the good news last week. My AN is the same size overall (not growing) but as the first MRI indicated and the recent MRI confirmed...  my AN is continuing to lose "enhancement" or as he described it literally, the blood flow is diminishing or stopping to the tumor. It is drying up.

Overall, my "internal instincts" are telling me something is correcting itself inside my head and body in the same manner the way my "internal instincts" told me something was wrong in the beginning.  I feel very blessed in what I have "not" had to experience in invasive surgery and the loss of quality of life thereafter.

I have had many e-mails and telephone calls from all over the world as a result and as a follow-up to my story in the AN ARCHIVES from fellow ANers craving information.  I am only to happy to help as much as I can with each and every person that has or will contact me.

Back to Mike's entry in Patient Directory

Last Edited: Wednesday, October 30, 2002