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. I called and made an appointment immediately. 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.