It was a Monday, February 23, 1993. We drove the four hours to San Francisco -- not to go to a great restaurant or to see a show or even to see friends, but for brain surgery. The sense of unreality I felt in the car journey was to last the next two days. At times it was more intense. At others less so.

After preliminary medical screening I was taken to meet the radiation oncologist who would be part of a five-man team performing my surgery the following day. He showed me the Gamma Knife stereotactic radiosurgery machine. It was spherical in shape with a pac-man like opening on one side, and looked like it had just landed from Mars. My head would go in this opening, fitted with one of the helmets that lined the room. The choice of helmet would depend on what size hole the medical team decided would be used to shoot radiation beams through the 201 holes in the helmet to the tumor in my brain. The helmet would be attached to a metal ring screwed into my head so nothing could move. The procedure was programmed by a computer. Questions were raised by me about possible power outages -- we had been having very heavy thunderstorms in February. Jokes were made about getting the right angle.

At 6:30 the following morning I went to the pre-op room. An I.V. was started. I was given a mild tranquilizer. A neurosurgeon, part of the team, arrived to screw the aluminum frame onto my head. Unreality became less so, as I could feel the four screws going into my scalp. With this contraption on my head I was sent for a final brain MRI and CT scan. Hopefully nothing would move. The team then interpreted these films and determined the dosage of radiation and angles, while I waited in my hospital room.

After about two hours I was called down to go into the Gamma Knife machine. The doctors were huddled together in the small control room which reminded me of an air traffic control tower. The helmet was fitted -- luckily one with small holes -- and jokes were again made about getting the correct angle. I was lying face down and advanced mechanically into the machine. The doors closed. My head and neck were inside, my body outside. Everyone left the room for fear of exposure to radiation. I wondered about the rest of my body too.¹

Countdown was for 9 1/2 minutes. After 3 minutes the gamma knife nurse's voice told me I was doing great and only had 6 minutes to go. Again with 3 minutes left, then with 30 seconds left. I began my own mental countdown. 30-29-28....0. I was mechanically withdrawn and doctors entered the room. Everyone seemed very pleased and relieved, and I felt like opening champagne. My husband was outside and I was sent back up to my hospital room where I was told I could have a late lunch!

I spent that night at the hospital and was released the following morning. I had only very minor post-operative symptoms. Mild nausea, mild headaches (which I nipped before they developed with Tylenol) and tiredness. A follow-up MRI was scheduled for six months later to determine if indeed they did get the right angle.

Was the surgery successful? Because this hemangioblastoma was so very small (4mm) and was not causing symptoms, doctors had said we could wait until symptoms developed, or try this as an effort to contain the growth of the lesion. Because the tumor was in a place where the danger to surrounding tissues was low, we went ahead with it. Six months later, the hemangioblastoma is the same size -- good news!

I feel lucky to have been able to benefit from this type of procedure. It was not invasive and sure beat invasive surgery, the neuro-intensive care unit, and a much longer hospital stay. It gives me peace of mind to know that this tumor has been dealt with, and is unlikely to grow and become a problem to me.

1. Dr. Wharam advises that the beam of radiation is so finely focused that the danger to tissues even one inch away is negligible.

[Editor's note 12/97: Please be sure to review with your medical team our Handbook and our list of Questions to Ask before proceeding with treatment. If your team does not have extensive experience in treating hemangioblastoma, we recommend that you have a more experienced center review the treatment plan before proceeding. Stereotactic radiosurgery is still surgery, and serious complications can ensue if the treatment plan is not optimal.]

Please let us know if you have had this treatment and would be willing to share your experience with researchers trying to determine the effectiveness of stereotactic radiosurgery in treating VHL. [See also the Report of the Focus Conference on Stereotactic Radiosurgery and VHL, May 1997.]

A List of Centers in the U.S. which perform stereotactic radiosurgery with gamma knife machines can be obtained from the American Brain Tumor Association, 2720 River Road, Des Plaines, IL 60018. Tel: 800-886-2282, Fax: 708-827-9918. The Alliance will helpt you locate a center near you which performs stereotactic radiosurgery with linear accelerator or gamma knife machines.

As published in the VHL Family Forum 1:3, September 1993. For permission to reprint, please contact the VHL Family Alliance at editor@vhl.org. Further information is available from the VHL Family Alliance, info@vhl.org.