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In no condition for surgery
Stewart's story
My name is Stewart Walden, I am 49 years old. I am married to a wonderful woman for 27 years and we have two beautiful daughters. One is 22 and just graduated from University of Delaware and the other is 18 and on her way to Towson University near Baltimore. Recently, my diagnosis of NF1 has been changed to NF2 because now I have an acoustic neuroma.
I have had numerous surgeries to remove lesions in peripheral spinal nerves (at C3, L4/L5), sciatic nerve, brachial nerves, ulnar nerves and more. The spinal surgery left me with a right foot drop. I have high blood pressure which I control with a number of medications (Tenorman, Diazide, Procardia, Cardura) and take Zoloft due to 3 episodes of depression. Previous surgeries have left me permanently weakened and after the spinal surgery I then had a CSF (Cerebral Spinal Fluid) leak that gave me intense headaches and had to be corrected with more surgery.
The AN measured about 2.5 cm on the MRI. This a two dimensional measurement. I saw Dr. Kalmon Post at Mount Sinai Medical Center who recommended surgical removal of the tumor which would leave me deaf in the affected (right) ear and with possible facial paralysis. Dr Post said that there was a chance of a CSF with surgery as well. I then went to Dr. Fred Epstein (who operated on me in '93, '94) of Beth Israel Institute of Neurology and Neuroscience who recommended waiting or Fractionated Stereotactic Radiosurgery (FSR) at Staten Island University Hospital (SIUH) with Dr. Gil Lederman. My current neurologist (Allan Rubenstein of Mt Sinai) said that I should go to U of Pitt for Gamma Knife, another form of radiation, where the helmet is screwed into your head and one shot of radiatiation is given.
In my current condition some type of radiation approach had to be the better alternative. Dr. Lederman and his staff reviewed my films and told me that I was a candidate for FSR. I then listened to him give a talk about his procedure for AN's and other brain abnormalities. Of course I wanted to take this approach since it promised so few side affects. His statistics were very impressive, but I have been told by some surgeons that they cannot be trusted because he has not "published". Dr. Rubenstein felt that Dr. Lederman's stats would not be the same for NF2 AN's. I spoke to doctors and geneticists at U of Pitt and Dr. Adler from Stanford. So I did not make this decision lightly or quickly. The internet was a tremendous help.
Dr. Lederman says that he has a 100% success rate. He defines success as tumor shrinkage or non-growth and little or no permanent damage to hearing or facial nerve. In 75% of the time the tumor has shrunk. He of course left the decision up to me and was adamant about not doing anything until I was ready. After speaking with others who had gone through the treatment, I decided to go for it. Since I live in Long Island NY, about 45 minutes from SIUH, it made the decision somewhat easier.
I'll describe the treatment:
1) a mold of my upper jaw and rear of my skull are made (1 time)
2) the molds are attached to bars which are then attached to a halo frame.
3) the frame is then place around my head and into my mouth and tightened.
4) me and the frame on attached to the machine that delivers the radiation.
5) a plastic helmet with 26 holes is attached to the frame and measurements are taken by sliding a rod through each hole. The measurements are checked and double checked so that I can be positioned in the same place each time.
6) a CAT scan is taken and the results are digitized (1 time)
7) the digitized results are used to make a 3-D model of the tumor inside my head and a plan of attack is created by the physicists (1 time)
8) the machine then rotates in an arc around my head shooting pencil thin beams that converge on the tumor. Each beam goes through my head but is not strong enough to do any damage to my brain (I hope), but the sum total of all 100 or so beams converging is powerful enough to disrupt the DNA of the tumor.
Dr. Lederman has determined that 20 rads is the optimum treatment. He then fractionates into 4 or 5 treatments depending on the volume of the tumor. Since he has a 3-D model of the tumor he can get a more precise cubic centimeter measurement rather than the 2-D MRI. It turns out that my tumor was pretty large volumetrically (5.2 cc) even though it had been measured as 2.5 cm. on the MRI.
In my case I needed 5 treatments. Each time, I got three arcs and I am done for the treatment. I had and still have no real symptoms. My hearing in the affected ear is poorer than the other ear but still very good. I had occasional pain but that has stopped since the treatments began.
I pray that this works and that even better methods of treatment are discovered. Dr. Fred Epstein (who operated on me twice -- and is a wonderful neurosurgeon and human being) said that eventually there will be a pill that will work directly on the tumors. Boy would that be wonderful.
Stewart Walden
August 1998
Updates
(9/99) Just returned from my appointment
with Dr. Gil Lederman. It has been a year (actually 13 months) since my FSR
treatment. He and his staff compared my recent MRI with the one from 6 months ago. They
concluded that the tumor has shrunk considerably and that the brain stem which had been
"pushed" by the tumor has returned to a more normal position. I am not an expert
in reading MRI's, but the shrinkage did seem obvious to me.
I have remained symptom free except for a degradation in the hearing of my affected ear. I
still have useable hearing but the affected ear is now about 65% of the unaffected ear.
Six months ago it was at about 80%. But still no tinnitus, facial problems or eyelid
weakness. Dr. Lederman does not feel that a hearing aid will help this type of loss, but I
might try anyway.
Dr. Lederman told me that he has now treated over 200 cases of AN without a
"failure". He asked me if I would be willing to have my picture taken so that he
could use it in the talks he gives on the subject. I have gone to that lecture - basically
he talks about the treatment and then shows before and after pictures of patients and
their MRI's.
As you know I have NF2 and have also had surgery to remove 5 tumors in my leg.
(3/00) My most recent MRI which was taken 17 months after FSR treatment at SIUH and 6 months after the last MRI, shows a "significant reduction" in size from 2.5 cm to 1.2 cm. The tumor is no longer pressing against my brain stem and the cystic portion is almost all gone. My balance seems to be better, even though there is no standardized test that I was administered. Dr. Lederman said that I can now wait a year before taking another MRI or hearing test.
My hearing was retested and showed no decrease at all freqencies and some increase at the highest frequency.
By the way both the MRI and hearing tests were taken at non SIUH affiliated facilities. It is nice to have independent sources agree with Dr. Lederman's assessment. He told me that he has now treated over 250 AN patients. While I was there for my checkup, there were at least 4 new patients. He asked that I speak to some of them as I was now the "new poster boy" for FSR treatment of AN's.
Update
(4/01) I had my yearly MRI and visited with Dr. Lederman yesterday. The tumor continues to shrink. He didn't give me exact measurements but said it was about 1/3 its original size. My hearing in the affected (right) ear is about the same (some degradation in the high pitch). He said I should have another MRI in 1 year.
(9/02) I went to Dr. Lederman in May for my annual checkup. The tumor is about 20% of its original size. My brain stem is nice and straight. My hearing in the affected (right) ear is about the same (some improvement at certain frequencies). My balance seems to have gotten worse but that could be due to other tumors in my lower spine and pelvis. He said I don't need another MRI for 18 months. I asked him if he could treat these other tumors with FSR. He was not too enthusiastic, but said that he would without guaranteeing anything.
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To Stewart's entry in the Patient Directory
Last Edited: Friday, November 22, 2002