Answer: Went in for stereotactic radiosurgery on Tuesday, 7 Sept, 1999. This was my third stereo since my 1994 diagnosis. Outside of some scheduling glitches with the MRI machine, the day proceeded very smoothly. I was escorted into my prep room at about 9:30, and was released from the hospital at 4:30. Two tumors were treated during this visit.

I once thought that having the frame attached was the worst part of the whole day, but that was pretty ho-hum. I've recently been having some back soreness, though, so it turned out that lying on that uncomfortable metal table during the procedure was a real challenge.

Outside of some fatigue after returning home that evening, which dissipated with a good night's rest, I was 100% back to my regular schedule the next morning, including a full day's work.

These were two tumors: one 12.5 mm and the other 6 mm. Both were comparatively larger than the previous scan. Neither one had a significant cystic component. I have no symptoms from these tumors. The strategy here is to stop their growth before they become symptomatic.

I have heard stories of people having less than glowing reports of their stereo experiences. I write just to add my voice to the mix. As long as this procedure keeps my tumors from becoming a problem, it is a welcome inconvenience. My experiences would prompt me to recommend the approach to others whose diagnoses fit the stereo profile.

-- David I., California

Heart Problems?

Question: Has anyone ever had problems with their heart after being diagnosed with VHL, such as with heart palpatations, chest pains and such? If so, did these symptoms start after surgery or before? There are two of us diagnosed with VHL, who are not related, who have these symptoms. We wanted to know if anyone else is experiencing these problems. -- Maria S., Pennsylvania

Answer: I have VHL and have had things occur after a brain stem surgery which seemed like symptoms of improper heart function. Heart palpitations were actually heard while I was in the hospital (felt by me too!) and were rather frightening. Several tests were done to be sure there was nothing serious going on. I was told that they would not hurt me; that I should let the doctor know right away if I had any changes or other symptoms of heart trouble and that the symptoms might just go away. Well, they lasted a few more weeks, gradually lessened and eventually went away.

Since a brain stem surgery eight years ago, I also had (and still get) fairly severe chest pains -- actually an extreme sensation of pressure (like a truck on top of your chest) is a more accurate description of what it feels like for me. Early on, I had been rushed into emergency several times, hooked up to EKGs and kept overnight for fear of heart attack because my blood pressure (BP) was very also high at the time. I'm still here -- no heart attack to this day. It seems the BP went up because of the fear and the pain, along with the fact I had a problem (that took years to identify) of widely fluctuating hypertension from a tiny bit of damage to the brain stem during that surgery. Pheos were ruled out with testing. My GI system was greatly affected by the surgery to the brain stem, and certain spots along the GI trail simply do not work right. The esophagus is part of the GI system, and what happened was esophageal spasms. They apparently can feel just like a heart attack can, according to the doctors. Now when it happens I think: "Darn it", try to relax a bit so I don't make it worse, and go about my business. Of course a quick prayer that it won't really be a heart attack this time still does cross my lips on the longer episodes. But tests today show no heart damage, so I probably need not worry after all this time.

Everyone is different! If you feel you may be experiencing heart problems, then you must get thoroughly checked out immediately by well qualified doctors to be sure it is not something serious. Good news will help put your mind at rest before you give yourself a heart attack worrying about it! Talk to your doctor about your concerns. Heck -- talk to several of them. It never hurts to get other opinions when you are very concerned about such an important issue. -- Melanie M., Massachusetts

Pain Control

Question: One of our members suffers from a great deal of pain. She is already using morphine adhesive plasters, and these don't always help. Does anyone out there have any experience with pain treatment? -- Richard H., Denmark

Answer: In regard to your friend that has so much pain, it reminds me of my recent experience after spinal surgery. For almost two weeks after surgery, I had some nasty back spasms that I was told were unusual in their duration and intensity. In the end, I am not sure that there was one magic answer, but I did learn one very valuable lesson about pain management....

While it is important to listen carefully to all the medical doctors have to say about your own particular situation, there are also a number of other approaches you can take on your own. Relaxation therapy, acupressure, meditation, music, etc. can all have very real results in pain management. There are many sources of information about this to find guidance. -- Larry S., Pennsylvania

As printed in the VHL Family Forum 7:4, December 1999. For permission to reprint, please contact VHL Family Alliance, editor@vhl.org. Further information is available from the VHL Family Alliance, info@vhl.org.