I have VHL and have undergone nine craniotomies, all in the cerebellum. I mention the location because this area is a balance center.
Not once did anyone suggest physical therapy because I was doing well, but, I went to see a physical therapist for a knee problem and mentioned in passing that I had had all of that neurosurgery. He offered me a set of simple "exercises" to work my balance. What a great idea!! I was faithful with them and noticed an improvement, even though I had not been at all aware of any deficit.
I have now learned to include in my exercise regime some aspect of balance, be it yoga, or the big inflated balls, called "balance balls." There a wide range of video tapes available on either subject, and the difference is astounding. I was very pleased when a neuro-audiologist (balance specialist) was clearly astounded at my "rock-steady" balance! All that and I currently have 10 tumors still in that area, yet no one can tell that I have had any run-in with neurological issues at all, least of all me.
I believe that there are many folk, who, unaware of these options, have resigned themselves to a life that is less that they can have. Brain elasticity is astounding! My tip for people would be,"Go for it! and Stretch your limits!"
As printed in the VHL Family Forum 10:2, June 2002. For permission to reprint, please contact VHL Family Alliance, editor@vhl.org.