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Question: In 1982, I developed a brain stem tumor that produced strange and severe dizziness when I turned my head too suddenly or tilted my head back too far. Never before or since have I had a tumor develop so quickly, causing such severe symptoms. Just as suddenly, in a matter of weeks, the symptoms stopped, and I have had no brain stem problems since. However, I am not sure what happened to the tumor--whether it disappeared, just became dormant, or something else. -- Michael L., North Carolina

Answers:

(1) I also had a brainstem tumor that caused strange and severe dizziness when I turned my head in certain positions or tilted my head back. The tumor has since been removed but I was initially misdiagnosed with "benign positional vertigo". That was definitely a problem because the correct diagnosis was delayed for almost two years, and in the meantime, that tumor kept growing and caused more trouble. In my opinion, anyone with VHL should always get an MRI whenever they have similar symptoms and should never be satisfied with "benign positional vertigo" as a cause for such symptoms. -- R.K., California

(2) I too was being treated for benign positional vertigo. Until I had a very bad fall one day (hit my head against the corner of the bedroom wall), and they decided to do some more tests. I had an MRA, where they found something that they thought might have been an aneurysm. Followed by an MRI only a week later, where they found the beginning of a tumor, later identified as VHL. This diagnosis was a great shock to me and my family, as this was unheard of in my family before. So I definitely would recommend an MRI being done to rule out anything else. -- Barbara M., Australia

Question: I have a problem lying flat. It makes my eyes roll and my stomach feels like I’m riding over the crest of a roll-coaster. This also happens if I put my head back when standing, like looking up at a plane or drinking from a can. Does anyone experience this and has anyone managed to work a way round it? I had brain surgery to remove some cysts 14 months ago and my neurologist told me that I might eventually stop having these symptoms but I should accept that this is now me. Advice please? Oh, apart from this I’m 95% recovered from my surgery, so we live to fight another day! Remember, life’s too short and it costs nothing too smile! — Cheers, Lee P., United Kingdom

Note: Be sure to check any such symptoms first with your doctor, as Lee did, to make sure there is no problem that needs attention.

Answers:

(1) I also have the same problem in lying flat and tilting my head back to look up. So, I always use a pillow and don’t tilt my head up very much. It was the same for my father as well as a friend of mine who had neurosurgery (not VHL surgery) in the same area. It might improve in severity as the years go by, but you can learn to adjust to it. – R.K., California

(2) My sister elevates her bed. That is the only way that she can stay in the bed, and she always has two pillows. She has equilibrium problems as well. I hope that your problems will ease for you. -- God speed, Linda D., Alabama

(3) I have found that if I clasp my hand around the back of my head, this helps to keep my head and neck steady, and I can look up at a bird or plane flying by with much less pain and dizziness. (Not for too long, though!) Hope that helps you both a bit. – Barbara M., Australia

(4) This problem was most severe for me 23 years ago after my 1st brain operation. Even tilting my head back slightly caused a strange and almost unbearable dizziness. Now, after several more brain operations, it is much less severe. Often I can lie completely flat; if I get the dizzy feeling, it almost always passes after a few seconds. -- Michael L., North Carolina

Excerpts from our online discussion. Used with permission of the contributors.

As printed in the VHL Family Forum  9:1, March 2001.  For permission to reprint, please contact VHL Family Alliance, editor@vhl.org. Further information is available from the VHL Family Alliance, info@vhl.org.