Looking for a second opinion

My husband wasn't diagnosed with VHL until he was 15 (1995) and had to have tumors removed from his brain. He lost the sight in his right eye after several radiation and cryotherapy treatments thereafter. In 2007 he had his eye removed because it was enormously painful. He has refused going back for MRI scans until I made the appointment in March of this year and said "You ARE going". April first we found out that he had more brain tumors. Saw the neurosurgeon on the second, neuro opthmologist on the 8th (left eye still good thankfully), and brain surgery on the 15th. He came out of surgery with a ventrical drain because his brain was filled with spinal fluid. After the surgery, he had no control over his legs. He had to learn to walk again.

Through other scans we found out that he also has spinal tumors, and had surgery May 21st. Unfortunately it couldn't be removed safely because it is so large and the cord is edemic. He had 28 treatments of radiation to 2 tumors on his thorasic spine and one to the brain stem.

Last Friday he had a follow-up MRI. Neurosurgeon said that the radiation didn't work. He has lost strength and functioning of his left leg. Doc wants to take him completely off of his steriod and let things progress. Therefore he will have to have spinal surgery again and will be paralyzed from the chest down.

We are not ready to give up. I am looking for someone who specialises in VHL. We are going to Mass General hospital in November. We would also like to go to NIH. He is only 29... there has to be SOMETHING we can do. He also has cysts on his kidneys and pancreas that they are just monitoring for now. My 8 year old does not have VHL, bnut my 3 year old does. I follow all the screenings and hope that things progress before he has any tumors.

I have found online that there are some meds that people with can take. Does anyone know about this??? I appreciate any help that you may have to help save my husband!!!

By mkj
Posted October 8, 2009 at 9:19 am
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I am so sorry to hear about your situation. Our son is twenty-one and he has had two brain and five spinal tumors removed. He has multiple tumors along his spine and several more around his brain in some very precarious places.

We have explored several options and decided to try a biotic called Avastin. Check out my latest entry on the thread, Spinal Tumors, for more detailed information about his results from just two months of the therapy.

Explore this site and learn about the variety of options that are available to you and your husband. When we have visited with a number of different doctors, I have mentioned some of the things I have read about on this discussion board. Joyce is awesome; she can probably direct you to a list of the best VHL specialists in your area.

By live
Posted October 9, 2009 at 11:49 am
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I would definitely contact NIH. One thing I always hear from doctors, geneticists and patients alike regarding VHL is that screening is very important. Early detection makes the treatment more plausible. Please do not forget to screen your children regularly. Even if genetic tests show that they donot have the gene test them once in a while. Good luck to you all and keep fighting.

By cathhi
Posted October 10, 2009 at 11:33 am
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By Heather31200
Posted October 14, 2009 at 8:32 pm
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Update---

We have an appointment on 11/11 at Mass General Hospital in Boston with Dr. Ilipopoulus. We were referred to him by our geneticist. I also made contact with Dr. Lonser at the NIH and he is willing to look at Tim's recent MRI's. Hopefully he will want us to go to Maryland for further treatments. Tim's primary doc says that we are doing the right thing. I am just so confused as to why his neurosurgeon wanted to give up and paralyze him???

By joyceg98
Posted October 15, 2009 at 4:31 am
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I cannot answer for your local neurosurgeon, but it sounds like you are on the right path now. The team at the MGH in Boston is excellent, and Dr Lonser's team at the NIH has even more experience with VHL, so both are fine centers where you will get the best possible advice. Asking both is a terrific idea and should give you a good set of options to work with.

Good for you in seeking better advice! It's good for all of us to remember ... if you don't agree with the prognosis, or if you just want to sanity-check and make sure you have the best advice, you can go or even send the scans to someone with greater experience in VHL and ask if you are on the right course.

For people in other areas, our list of VHL clinical care centers can be found at vhl.org/ccc

All the best,
Joyce

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