Remove a Cavernoma from the inside my thoracic spinal cord.

Several years back I was experiencing an itch in the mid back area. As time past the itch continued around to just under my right breast. I had a MRI done and the neurologist that I was seeing told me that I had a cavernoma right in the middle of my thoracic spinal cord. He also told me that it is in a spot that it is better to just monitor it than try to remove it. He gave me Lyrica to help with the itch. The itch is a type of itch that is not at the surface of the skin. It is one that can't be saticfied. About a year past and the symptoms started to get worse. My right leg started to loose feeling. My leg feels numb down the front to my 3 middle toes. I then went to a different Neurosurgon and another MRI was taken. I was told that the cavernoma has gotten bigger. He also said that the risk was to high to remove it and that we would continue to monitor it. About 6 months later the symptoms got worse. Now both my legs have numbness and my toes feel like they are on fire. I have some numbness in my back and my butt. I went back to the doctor and had another MRI done. Once again it has gotten bigger. My doctor said the we would continue to monitor it again. I'm getting to the point when I try to get up after sitting down that my right leg feels like its dead. I almost have to force my leg to work to start walking. My question is, Can you refure me to the best Neurosurgon in the US that would attempt such a risky surgery. I have been looking on the internet, but there are so many that I'm not sure what surgon or spine institute to go to.
Thank you for your help.
Figito

[Dawn1214]

Hi Figito,

I just recently found out that I have a cavernoma in my spinal cord too. i live in Upstate Ny and I am trying to find a specialist. I am sending my information to AZ to a Dr. Spetzler. I hear he is very good. I also have an Arnold Chiari Malformation and want to get his input on that as well. On wednesday I am going to a dr. at the Cleveland Clinic. i am hoping to get some answers there. I would love to compare notes with you as I have had pain in my shoulder blade area and breast area for over 4 years. I am now getting pain in my right thigh and foot. Ahh the tests and therapies I have gone through to try to get rid of the pain and I am still being told that they don't think the cavernoma is causing it. I want some real answers.

I understand that everytime they bleed they cause more damage and get bigger. I am really uptight about it and I know there are ways to get it out of there I just don't know who to go to either but I am going to find out before it gets worse. No one understands the pain unless they experiance it. It is alway there and it is just awful.

Lets chat and compare notes..

Dawn

PS it is really hard to find others with cavernomas in the spinal cord they are very rare...

[juanmcgee]

A related discussion, Thoracic spinal cord cavernoma was started.