Little did I know when I wrote my last article for the VHL Family Forum, "Up For the Fight", that I would have brain surgery in such a short time. On September 9, 1999, I had bilateral brain surgery on the right cerebellum to remove a hemangioblastoma and on the left side to repair a spinal fluid leak from a previous surgery.

The symptoms were sudden and distinct and I knew there was increasing pressure. We know that each manifestation of VHL is different and symptoms vary. But I believe each of us knows our own body and its functions better than anyone. If something is not right, we know.

Do I practice what I preach (as the old saying goes)? You bet I do! I called and made an appointment immediately. Is it ever easy to hear you need surgery? Although I dread those words as so many of you do, once we hear it is necessary, the choice becomes easier. Early intervention is important many times in determining the outcome.

I want every one in my VHL Family to know that my surgery was very successful, recovery has been quicker than one could hope for and physically I have more energy than I have had for years. My neurosurgeon remarked that my balance is better than it has been for years. We agreed that the spinal fluid leak had caused an accumulation of spinal fluid that put pressure on my brain stem resulting in various symptoms, such as difficulty with balance, weakness in right arm and leg, and intense tiredness.

I learned some interesting things from this surgery. When I called to make an appointment the nurse remarked that my symptoms probably were not coming from the tumor. I was not sure what the cause was, but knowing there was increased pressure, I pushed for a MRI. I also know from experience that symptoms may not necessarily match what the medical professionals feel is causing the problem.

There is much to learn about the body’s neurological functions. I think we have to be strong participants in our health care and not dismiss possibilities too quickly. My neurosurgeon was not available to review the scans with me the day of the MRI. The radiologist who reviewed the scans did not see the accumulation of spinal fluid. I insisted that my neurosurgeon review the scans later that week. The neurosurgeon recognized the problem and worked with me to schedule surgery. I also had a relatively small tumor that he felt could be easily removed at the same time.

After my earlier brain surgery in January 1996, I had ongoing difficulty with balance and fatigue along with severe spinal headaches. It was four months before I could even sleep in a fully reclined position. My recovery had been long and difficult due to brain swelling before and after the surgery. Follow-up MRI’s indicated the leaking spinal fluid was decreasing and it was decided that nothing further was indicated. My neurosurgeon told me my balance was as good as it was going to ever be. I accepted his opinion and learned to compensate in many ways, pacing my activities during the day so I would not be overly fatigued in the evenings. I remember hearing comments from friends and family such as "You are not as young as you used to be" and "If I did what you do, I would be tired, too". I have taken care of children for over 20 years and rarely sat down. I did not understand why, all of a sudden, I was so very tired.

After the surgery this past September and the repair of the spinal leak, I was given a new lease on life. It was not my age or my job. It was displaced, trapped, leaking spinal fluid. Now I am the person I was before my surgery in 1996. I learned that if deficits occur, it does not necessarily mean they will be permanent. And it is perfectly within reason to question your medical professionals about treatments. Do not ever give up!

After three and one half weeks from the date of surgery my neurosurgeon cleared me to go back to work. I think even he was surprised. It has been truly remarkable!

Even though VHL can manifest itself at any time, I feel very strongly that a well informed patient and medical team can help us through each episode with a better outcome.

Don and I are counting our "Blessings" and God has answered a multitude of prayers on my behalf. We want to thank each of you who offered your love, support, and prayers the past few weeks. God has also blessed us with a loving; caring "family" that truly understands what we are going through.

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.

mystory