People need to know about Spinal AVM

[AVMowner]

Hi Steve, it appears you have not posted for 2 years. I hope your doing well. I have had a Spinal AVM for 8 years. I had to become paralyzed before the doctors figured it out. I have had 2 spinal operations and am probably heading for a third. I am thankful to be living in Canada for reasons of health care. I am sorry to hear Steve, that you have had so many complications in dealing with medical and Government bodies. I know how frustrating all this can be. This is my first post. I was just wondering how Steve is doing.
I know all AVM OWNERS Have to deal with the same problems. We need a way to let people who are suffering with pain and the beginning effects Spinal AVM 's bring, paralysis, numbness, weakness. sensations and all kinds of other related issues. The pain is usually in the lower back and hip areas.

The biggest problem is that Doctors don't or can't diagnose Spinal AVM's PROPERLY! In my case I started having lower back pain( for several days ). I first went to a Chiropractor with severe back pain( day 1 ), the next day she sent me for an Ex-ray ( DAY 2 ). The next day my family Doctor gave me a prescription for my pain,He thought I had a pinched disc or something similar( day 3 ). The next day my Friend help carry me into my Doctors office where I fell into one of his patience chairs and broke it, landing on the floor in pain ( day 4 ) Finally he took notice and sent me to a hospital nearby. The staff there could not diagnose the problem (They had no MRI machine ) so they sent me to a hospital in Kingston Ontario. I went through several hours of very painful Diagnosis. Finally a MRI issued where the saw the FISTULA OR AVM in my spine. 2am( day 5 ). 6hours or so later a neurologist came to my room to discuss his findings. By this time I was completely Paralyzed from the waist down. A terrifying experience I hope no one else has to go through.
My surgeon told me about the AVM and the odds associated with getting one. He gave me the option of surgery with the risks, 50/50 that I will walk again. Well, considering I was Paralyzed we agreed surgery was a no brainer, for me anyhow. I believe it was the very next day I had emergency surgery. Days later I started regaining movement and went on to recover very well over a period of months, with minor paralysis, sensation and pain. I WAS WALKING AGAIN! I even went back to work and could function almost normally.
2 years later BAM! the symptoms reappeared. SURGERY AGAIN. This time the outcome was less spectacular. Months in the hospital with slower recovery. Months with rehabilitation. The surgeon told me he put some sort of paste in the spine to strengthen the arteries and veins. It has been 5 years and I have suffered with pain and all the side effects of Spinal AVM. Enough for now!
The word needs to get out to sufferers. Get an MRI OF YOUR SPINE!!!
Thanks for listening.
Avmowner.