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VHL

Spobear123
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Can someone give me true meaning of this VHL from what I"M reading it sound like therer a tumor. I doing a research I am a caregiver to my Husband He had a cancer brain tumor remove 31 year ago and in January he had Meningolmia removed. Had 3 surgery and we facing are 4 surgery June 20 . He had as a child had serizures 10 years before decovering first Tumor and same 10 year of serizures before last tumor was discover. I am studying as to why him when all his family are healthy never had tumors. Please give some information to help my study.
Sandra

Explore topics in this discussion:

Cancer Surgery Rare diseases Seizures Stress

1 reply

joyceg98

Sorry to hear about your husband's challenges, Sandra.

What you are describing is not typical of VHL. For the details, please see http://vhl.org/handbook
VHL tumors in the brain are "hemangioblastomas" which are a highly vascular tumor. A meningioma is usually quite different. Check the pathology report for the pathologist's analysis of what tumor type this was. The report from 31 years ago will be less reliable than the current one.

There are thousands of rare diseases, and it sounds like your husband may have some syndrome. Whenever someone has a tumor at a young age (under 50), and especially where there are multiple tumors, there is probably some genetic promoter at work.

This may be something that occurred for the first time in him. In order to make a baby, there are millions of base pairs of genes that have to be copied accurately. Sometimes there's a tiny flaw in the copying. Most of these copying errors turn out to be pretty insignificant, but sometimes there's a change that can be harmful.

In this community, most people have VHL because it runs in the family, but 20% are the first one in their families ever to have VHL. Your husband may also have a "new mutation", a first in his family, but nonetheless problematic for him.

You might want to sit down with a genetic counselor, go through the set of things that have occurred, and discuss what known syndrome this might be. Depending on the cause this might be heritable from him forward. I don't know, but it's a good question to explore with a genetics professional.

Meanwhile, the section on Living with VHL in the Handbook is just as relevant to you and your husband as it is to people with VHL. By now it is clear that his condition leads to tumors, so there might be another one down the pike. Whatever you can do to keep his basic health and stamina in good order, and his immune system working at its maximum, all that will be to the good. Manage your nutrition, manage your stress, and work out coping techniques.

The seizures were likely caused by the brain tumor, so any seizure activity should be looked at as a possible symptom of a new issue. Hopefully your doctor will work with you to analyze things much more promptly so that you can watch these things grow and decide when is the best time to act, before he begins having nasty symptoms.

All best wishes,
Joyce

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