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My mother was diagnoised with 2 brain tumors in June. She lost an eye to VHL in 1963 and is blind in the remaing eye. She has also lost one kidney and part of another to VHL. She is having major balancing problems and dizzy spells. Being blind just makes it harder on her. She was once very active, despite being blind. Now all she does is stay home. We are waiting on a consultation at NIH. It is so hard, we are starting to lose hope. Any suggestions?
Be sure that your doctor at NIH knows about the symptoms, and especially about any changes to the symptoms, or changes to the rate of change.
If the symptoms get worse, go to the emergency room.
Don't despair -- DO TAKE ACTION!
Best wishes,
Joyce
Saw a neurosurgeon in OKC Thursday. He advised that there was really nothing they could do. He would not operate and did not think anyone else would either. Told her to think about a living will. Had a spinal MRI and it will be sent to NIH, but they don't seem interested either. She has pretty much given up. We are pretty much a hopeless family at this point.
Who did you send it to at NIH. In order to be treated there, you have to fit the profile required by one of their currently running studies. Everything they do is in the name of research. However, they don't typically treat the general public unless you fit into one of their studies. Consider NIH a long-shot. I wouldn't let my health deteriorate while waiting for a consultation. You need to act.
If nobody at NIH seems interested in your case (not because they don't like you, but you simply don't fit their research profile at this time), you need to find other treatment now. Don't wait for someone to become interested. Act now.
Find a neurologist who will speak with you. If that person is unable to help you, ask them who will. If they tell you nobody else would be interested in talking to you, RUN! That is one bad doctor. Nobody tells you to write up a living will and get your things in order without insisting you get another opinioin. Wow!
Call your insurance company and ask for a neuro surgeon who has treated VHL. SPEAK with someone at NIH. Even if you don't fit their protocols, they will give you a list of doctors who will treat you. Ask your primary doctor for a list of names. Don't expect it to take 30 minutes to resolve. Expect to spend hours on the phone... but SPEND those hours!
Like Joyce says, take action now.
I hope everything works out. Best wishes.
Doctor at NIH said the tumor on the brain stem was inoperable. the tumor is 2 cm and wrapped around the brain stem. He suggested radiation or chemo. Mom has an appointment with the neurosurgeon here next week and will discuss further options and second opinions. Any suggestions on doctors who do radiation therapy or chemo for these types of tumors? Has any one had this done? We are starting to get desperate.
Rocksea,
Our son has a number of tumors that are in some very bad places in his central nervous system. We took him to MD Anderson in Houston. The people there are very talented. Some of them are very well versed in VHL. They examined him and made some recommendations. Our son is currently on a course of Avastin to try to limit the growth of his many tumors. He has been taking it since the end of July. He will have another set of MRIs in a couple of weeks to see if the Avastin has held the tumors in check. He had MRIs at the end of September and the tumors had remained stable after two months of therapy. Of course, hemangioblastomas will sometimes go through dormancy periods so it is impossible to tell if it was because of the Avastin or the HBs unpredictable peculiarities. We live near Omaha and an oncologist here is administering the treatments.
Our son wants to go back to MD Anderson after the next set of MRIs comes back from the radiologist. We will meet with their team of doctors that have seen him previously to see if we should stay with the Avastin or give radiation treatments a try. MD Anderson does have proton beam radiation at their facility. Here in Omaha we have access to Novalis, and Gamma Knife. There is a CyberKnife in Lincoln. We have not had anyone post anything about proton beam on our discussion boards. From what I have read, it may be far superior to other types of radiation. Is there anyone out there in our VHL community that has had proton beam treatments on hemangioblastomas?
Too often we drag our feet trying to decide "what to do". Every situation is different, but gosh darn it anyhow, we need to know what is best and have the ability to act promptly.
Rocksea, MD Anderson may very well be a good choice for you. They will, at the very least, be able to give you a quality second opinion.
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