Ask the Family

Excerpt from a discussion in the online discussion list, vhl.clinicahealth.com. Reprinted with permission of the authors.

Question: If you have 3 small brain tumors, does it matter what size they are to start to react? I have always thought it doesn’t really matter what size they are, they can react at any time or cause problems. It’s a question my brother has been asking me, as he’s having no luck asking the genetics people. — Lesley B., Germany

Answer (1): This is not a question for the genetics people. The best people to answer this question would be a neurologist or neurosurgeon who is looking at the scans in question. In the brain, it’s not so much a matter of size, it’s where it is and what it’s sitting on. Size matters too, in that there is what they call a “mass effect” — the effect of excess bulk inside your skull. Depending how much extra stuff is in there (tumor, cyst, and/or swelling), displacing normal brain tissue, you can get symptoms just from the compression.

So tell your brother to go see a neurosurgeon or neurologist, get a scan, and have a heart-to-heart talk about what’s there and what action (if any) may need to be taken.

I know it sounds scary to talk about brain surgery. But the best time to do it, if you need to, is while the symptoms are mild — present, but mild. You have headaches, you’re starting to throw up, maybe you have a little difficulty walking a straight line, but you’re not falling down or passing out, and have no slurred speech. Once the symptoms get more serious, then the surgery may be more difficult for the surgeon, and the recovery is going to be more difficult for you.

Scans are wonderful. People who had brain tumors in the 60’s and 70’s didn’t have MRI’s. We had to guess. He’s throwing up and has headaches that won’t quit, and we know he has VHL, so he must have a brain tumor, probably about there, so let’s go in and see what we see. (Or worse, we don’t know she has VHL so we continue to blame it on early menopause or hysteria or a bunch of other things until she goes into crisis.) Believe me, the scans alone are a blessing.

Today we can see precisely where the problems are, which way we can approach them most successfully, and plan a surgery that will do the best possible job. If we have a series of scans every year or two, we know that the tumors are growing at a particular rate, so we know we should plan to do surgery in the next few months. We can organize a team we feel confident about, and schedule it into our lives. With this carefully planned approach, people are having much better outcomes, with few or no deficits after the surgery.

So it doesn’t pay to wait or play games or hope those headaches will quit, or wonder what might be causing you to throw up twice a day for a month — get thee to a neurologist and get the clear information and expert help you will need to get through this in fine shape!!!

-- Joyce Graff, Massachusetts

Answer (2): I agree with Joyce. I agree that it doesn’t help to wait and see if the problems will get better. Take action! Don’t be so bold as to overreact to everything, but be aware of what’s going on and stay on top of your own health. Don’t live in fear of what might happen. Be open and honest with yourself and take action when it is needed; don’t be ashamed to admit when something is not right.

I suffered from symptoms of a brain tumor for two years. The symptoms were passed off to me as many things, none of which were a brain tumor. I had headaches, dizziness, and routine vomiting. Many doctors told me that it couldn’t be a brain tumor, it had to be something else. They were all wrong!

I had a 2cm brain tumor growing, sitting on my brain stem. If they had just thought logically that a girl with VHL might possibly have a brain tumor, and had actually given me an MRI, they would have found the tumor. Instead, they passed off all my problems to be related to some other reason. I am still sick, five years later, because we waited so long to take care of the tumor, not realizing what was going on. If they had just taken the right precautions and looked for one at the onset of the symptoms, I may have been spared all these problems.

The moral of the story is: don’t beat around the bush. If you’re having symptoms, of any kind, tell your doctor and get a scan. A simple scan may save you from a lifetime of problems. Even more, a scan may save your life.

— Christina D., California

Answer (3): I have to agree with everyone here that has spoken on the benefits of not waiting for any type of test or treatment. I truly believe that this could have saved my brother-in-law’s life. If he had known sooner or had surgery faster he may have been alive today. I believe in my heart that it was the fact that the treatments weren’t given quickly and the fact that if he had known sooner that he had VHL he would have been here now. I hope that no one waits to have scans or any necessary treatments. It can definitely save your life.

— Mindy G., Massachusetts

As printed in the VHL Family Forum 13:1, April 2005. For permission to reprint, please contact VHL Family Alliance, editor@vhl.org. Further information is available from the VHL Family Alliance, info@vhl.org.