Skeptic from Africa
Hi, I am Jerry and I live in South Africa. In 1994, then aged 67, I experienced two unexpected medical problems:
I first consulted an ENT doctor (Ear, Nose, Throat) who found the affected ear healthy. He referred me to a balance specialist, who declared the left balance organ dead and recommended an MRI scan. The 1994 MRI diagnosed a "suspected AN" and a 1995 scan confirmed that I had an Acoustic Neuroma, at that time 8 mm in diameter. My hearing on the afflicted (left) side was diminished to 50%. My (left) balance was totally gone, but the right balance organ learned to take over fully within a few weeks. I continued to drive thousands of miles per year.
All the doctors I saw from then on talked of surgery as the only solution, and the surgeons I spoke to wanted to operate at once. NO ONE EVER MENTIONED NON-SURGICAL ALTERNATIVES!! Certainly not the surgeons. Luckily I have a healthy scepticism. I delayed surgery and adopted a wait-and-see and LEARN attitude. I knew that ANs are non malignant, that they are very slow growing, that AN patients enjoy the luxury of time to study and make INFORMED DECISIONS. But I also knew that eventually I would have to act.
My AN was indeed slow growing. Although close to 70, I had 3 great years without any new symptons, without deterioration. However, the MRI in February of 1998 showed a growth of my AN to 13 mm diameter and "beginning mass pressure on the cerebellar flocculus". Although I was still feeling fine, no new symptoms, I knew that this was the red light, the time had come to take action.
For two months I worked hard, consulting doctors in Africa and Europe, searching the internet about AN therapies. I found out that AN surgery normally lasts 8 hours or more, usually leads to complete loss of hearing on the affected side, that it often results in very difficult NEW problems, e.g. facial paralysis, permanent headaches, tinnitus, inability to close the eyelid, sometimes spinal fluid leaks. Also, at my age 8-9 hours surgery is a dubious proposition.Thus I kept on searching for alternatives to surgery.
Without the internet I would never have discovered that there ARE such alternatives to AN surgery, namely the "gamma knife" (GK) = one shot radiosurgery and FSR = Frationated Stereotactic Radiation, done in several sessions, aimed by the robotics of a moving radiation source. If you wish to learn more about FSR, I suggest the following link: http://www.interstat.net/siuh/radoncology/brainrad.html .
After careful analysis, I decided on FSR at Staten Island University Hospital in New York, even if I had to fly halfway around the world to get it done. My FSR was performed from 30 March 98 - 03 April 1998 under the supervison of Dr. Gil Lederman. No pain, no blood, no hole in my head, my hearing saved!! If you want to know how it went, here is my report:
Report on FSR Therapy at SIUH 30 March - 03 April 98
Arrival in New York after an 18 hour flight, went to hotel. The whole FSR procedure at SIUH is done without hospitalization, on an outpatient basis, come and go. Some patients drive their own car to their radiation sessions and back home.
Day 1: Afternoon appointment at SIUH. Fitting of your tailor-made individual head frame and mouthpiece that assures identical positioning of your head during the CT scan and the subsequent radiation treatments. This preparatory mechanical work is done by pleasant, obviously highly skilled, technicians, who let you know what they are doing and why. Duration about an hour.
Next the CT scan, with mouthpiece and headframe in place. This CT scan defines the precise location, size and shape of your AN and provides the data to program the robotics of the radiation equipment. I learned that the aiming device can fit the beam to the target with a precision of less than one millimeter. Duration of CT is less than an hour, including a negligible wait.
FSR at SIUH is normally done in 4 or 5 radiation treatments, depending on size of tumor. Sessions are spread over several days, to allow healthy tissue adjacent to the tumor to regenerate. In my case and at my request it was it was done on consecutive days, as I wanted to get back home to Africa quickly.
That same evening: First meeting with Dr. Lederman, who commands a small army of doctors, technicians and other helpers. Even though it was 7 p.m. he had an hour for me, listened, took notes, discussed my MRIs, told me that 4 sessions would be adequate. He is a guy that makes you feel good. From what I observed in the corridors, ANs are among the less dramatic cases he deals with. Others were obviously malignant. Aren't we AN patients lucky, comparatively?
Day 2: The first (out of 4) radiation sessions. It was all much easier and quicker than I had believed possible:
While you sit in your regular street clothes, you are helped into your headframe and mouthpiece. You lie down on a padded table, which the staff can move vertically, and in horizontal rotation. Your headframe is now firmly attached to a fitting evidently connected with the robotics, to assure precise aim. Now comes the transparent plastic helmet, which you may have seen on the SIUH page http://www.interstat.net/siuh/radoncology/stereotacticrs1.jpg .
You do not wear this helmet DURING the radiation, but BEFORE. It is temporarily attached to your personal headframe and through the various openings (about 20) the precise distance to your head is measured from all sides. This was first done at the time of the CT scan, and it is done again and again before each radiation session to corroborate that your head is in the identical position each time. Lists of the numbers are kept.
Radiation at SIUH is of the linear acceleration type, produced by a car-sized machine, made in California. It looks like something from a sci-fi movie. During one session you get 3 rotating shots of about 30 seconds each. During those 30 seconds, the radiation "gun" circles over you in an arch. Between each of the three 30 second shots the table you rest on is rotated by 45º. The idea is evidently that the good tissue is exposed only very briefly as the pencil thin beam moves around and over you, while the target area, the tumor, is exposed to the beam for the full 3 x 30 seconds.
One whole session takes about 15 - 20 minutes, most of which is taken up by the precise fitting and setting up the equipement. At the end you are allowed to remove your headframe, you get a pat on the back, a smile, a bye-bye and off you go. In my case to the S52 bus, which took me to the ferry and the ferry to Manhattan. One evening I sat in a Broadway musical 90 minutes after I had risen from the radiation table. Another evening I went to the opera, another to one of my favorite restaurants.......if you must know, it is the Oyster Bar in the catacombs under Grand Central Station.
Day 3: Same procedure
Day 4: Same procedure
Day 5: Same procedure, plus a debriefing with Dr. Lederman; MRI recommended 10-12 weeks after FSR.
Day 6: Off to the airport, due to favorable jetstreams the flight to South Africa is nonstop, 14 hours.
Day 7: Sunday with family and dog and garden and autumn in Africa. No blood, no pain, no facial paralysis, hearing not gone.
That was my experience with FSR. You are welcome to contact me by email.
Gerhard Kemper < Pangloss AT sybaweb.co.za>
Johannesburg, South Africa
15 May 1998
(July 28th, 1998) First follow-up MRI after the April 98 FSR therapy. The typical discoloration of the (former) AN is visible proving that the AN is dying. First indications of shrinkage are also evident. I am aware that FSR does not "remove" the AN with a bang. FSR kills the AN gradually and in most cases shrinking occurs. For me the ANs demise is good enough, shrinkage an extra bonus.
I continue to drive thousands of miles per year, in Africa, Europa and the Americas, right and left-hand traffic, no problems.
(September 1998) We fly to Austria to organize and attend the 30 hour wedding of our daughter in the Salzburg region. I am master of ceremonies, 5 months after FSR! 5 months after surgery? Impossible.
(June/July 99) Another tour of the USA, following the tracks of the Lewis and Clark expediton (1804-06). From the East, up the Missouri River, criss-crossing the US Northwest, then via California back East, 8000 miles, mostly by car (I did all the driving) partly by boat, some hiking, now 72 years old.
(January 2000) The twice-annual MRIs showed that my AN is dead, some tissue left, which causes no harm. From now, MRIs only once a year. I comply, mainly to help prove the track record of FSR. Personally, I consider my AN history, I move on to enjoy retirement and my family, to enjoy travel and the years left to me.
Would I go for FSR again? I certainly would! It preserved my quality of life. If you wish you can contact me.
Gerhard Kemper < Pangloss AT sybaweb.co.za>
Johannesburg, South Africa
To Jerry's entry in the Patient Directory
Last Edited: Wednesday, October 30, 2002