Three weeks ago I had an MRI done due to neck pain. I was informed that I had an AVM, an “oh by the way” that was discovered on the MRI… all of a sudden the neck pain is not the doctor’s big concern, the AVM is. In the past two weeks I have had another MRI done and have seen two neurosurgeons who passed me on to an Intervention Radiologist who I consulted with yesterday. He has informed me that the only way to find the AVM is by angiogram, this going from my thoracic spine to the top of my head. He states that he doesn’t know where the AVM is and this is the only way to find it and see if it is fixable. He also stated that there were may risks involved IF he could find the location and IF he was able to get to it. From what I can see on your website most of your contributors have had aneurysms or AVM’s located in the head, (brain). Has anyone had a spinal AVM or are they mostly located in the brain? If anyone has some answers for me I would appreciate it. Apparently I have had this condition for some time but would never have known about it but for the MRI. I don’t even know what questions to ask. I work for a doctor in Family Practice but his is new to me. I would appreciate any help I can get.

Thank you

HI Beverly. Welcome to the group. If you go to where it says “Members” at the top section and then type in Spinal AVM into the Search box, that will show you some of the members who might have these. There are definitely a number of members with them and I’m sure it will help you to read their stories. Not all the members are active (as in checking this site every day) so asking them questions might not work but you can always try! Good luck with gathering your information. Ask lots of questions and write it all down!

Hi Joy, Thanks for the information I did look it up and read some of the comments, this is definitely scary for me. They tell me I have lived with this all my life and I have the option of doing nothing or going for the angio, still have not made up my mind. I am certainly thankful for this website and people like you to help me along. Have been reading all I can but knowing someone else has been there first helps. Thanks again.