tumors rare on c-7 spine?

Question

Has anyone ever had a AVM, or vascular tumor removed from the spine just located in the throat area connected to the c-7 vertebre. Very rare and I had many opinions , but not satisfied with the answers from dr's. i been told very very rare and the tumor is supposidly eating at my bone, feeders have attached itself to tumor says one dr. Another dr said fractured spine where tumor located. Has anyone every gone thru a procedure like this or know of somewhere where i can locate someone to talk to about this with. Im looking for another or others that have gone thru this procedure. Is there a forum where other people in this situation can compare/talk/or exchange stories or ideas? Need help thanks. I need reassurance that this has been done somewhere by some one. Ive been thru many dr's and no one has seen anything like this. SOMEONE has to have gone thru this or know someone with the same issues somewhere.

Answer 1

I don't know enough about this disease to refer you to other patients going through it, but I think for such a rare tumor if you haven't been to a major tertiary care center. I'm sure other places may have good specialist teams, but Massachusetts General Hospital has a superb multidisciplinary expertise in treating AVMs. If it's too far to make it there, then it may be worth calling someone there in neurosurgery to see if there is an expert closer to you.

Answer 2

It is important to know the exact name of the disease you've been diagnosed with. What type of vascular tumor do you have? Do you know if it is malignant or benign? Do you know if is called a Hemangioendothelioma ? If it is you can check with the Rare Adult Cancer forum to see if you can contact others. If it is not this disease look through the list of rare cancer diseases on the site to see if you can find yours:

http://survivor-support.rare-cancer.org/forum/

If you have a benign vascular tumor . . . you still might be able to find treatment information at the rare cancer site.

Good luck.