Ask the Family

vhlfa@egroups.com is a discussion group among 125 people with VHL in the English language. There are discussions also in Spanish, German, and French, with smaller numbers. Won’t you join us? After introducing herself, one member received the following reply from another member:

Welcome to "the family".

We are sorry you have to be here but since we all are faced with VHL this is the best place to be. It is so nice to know that in moments of stress and confusion you can go to a site and get information you need, lots of good doctors to turn to, and a host of friends that know what you are going through, because we are all going through it ourselves. Also, knowing that others suffer the same plight sort of lessens the load on your shoulders just by knowing that others know what you are feeling at that moment. On top of that! We have Gale and Maria and others that provide us with factual info, and of course the families that provide you with their own experiences that helps you deal with yours. I am thankful for this site and the people that are involved.

Now you take care, and remember that we are all here for you and your family.

Good Luck. God speed. -- Linda D., Alabama

A new member wrote to the Editor:

I was wrong, I find it inspiring seeing all the courageous stories and the support and friendship for each other. Also, on days when I may be feeling down, these stories stop me from feeling sorry for myself.

-- Neil W., Massachusetts

Slow Recovery from Brain Surgery

Question: My husband had headaches from VHL hemangioblastomas for many years. His cyst grew quickly over the last year, and his neurosurgeon decided that it was time for brain surgery. He was back on his feet in weeks, and felt great at the 5-week checkup. There is a leak, which the surgeon feels will go away in six months. Meanwhile, however, it causes periodic swelling which causes a lack of well-being, making him generally unable to work. Is this normal? -- Concerned

Answer: Just a few thoughts to share. The surgery might have been 'routine' from the doctors perspective, but quite a trauma for your husband's body -- it takes a long time to heal. The removal of the tumor or cyst marks the beginning of the healing process. I found recovery a process of expanding my limits and gradually easing back into a healthy lifestyle. Taking small steps, pushing little by little, trying to do more everyday -- letting my body tell me when limit has been exceeded. Then there is the emotional healing. Considering that your husband is young and otherwise healthy, and probably in good physical condition with his outdoors job, the surgery might have prematurely brought several philosophical and psychological issues to the surface.

Regarding the leaking -- I question everything the doctors tell me. What do they think is causing the leak? Why wait 6 months? What do they expect to happen in the 6 months? What will they do if the symptoms haven't changed in 6 months? Is it common???? Keep asking question. --- Rob A., Ohio

As printed in the VHL Family Forum 8:2, June 2000.  For permission to reprint, please contact VHL Family Alliance, editor@vhl.org. Further information is available from the VHL Family Alliance, info@vhl.org.