spinal cord avm

[LRH38]

Steve,
My name is Larry. I live outside of Philadelphia, Pa. I have a spinal cord avm at the very top of my spinal cord. I had my first surgery to try and remove it in 1974. Mine, like yours was embedded in my spinal cord and the neurosurgeons told me if I didn't have the surgery I would be in a wheel chair within 5 years.
I was also told I could be be completely paralyzed from the surgery, not a great choice for a 21 year old.
I was in the hospital for almost a month and had to learn to walk, eat and do most things for myself over again. My right arm was so effected by the avm that I switched to using my left arm. I had neck pain for almost 6 years after the surgery, but was able to go back to work about 7 months after the surgery. During the next few years after surgery I had 2 instances of bleeding from what was left of my avm (they couldn't remove all of it without danger of cutting into the spinal cord) and both times the pain was so bad I would black out and my wife would have to call the ambulance to come get me. The doctors would drain the blood from my spinal column and the pain would eventually go away.
Things got better for me and I was able to do construction work and had my own business building home additions and new homes. I had a lot of weakness in my right arm from the avm, but kept going in construction for about 17 years.
I finally had to quit construction work because the weakness in my right arm was getting worse and the avm was starting to effect might right leg.
I got into sales work and in 2003 my wife and other family members talked me into seeing a neurosurgeon at Thomas Jefferson Hospital about doing an embolization on what was left of my avm to try and stop it from further damage to my arm and leg. The procedure was a total failure and they came very close to killing me in the process. I was supposed to be in the hospital one night, but ended up being there 6 nights and suffered a lot more paralysis, even on my left side which I had not had before. I could no longer walk without a cane and now could not do much with either hand. I was afraid that I would no longer be able to work and support my family. My desire to live could have very easily been gone at that point if it had not been for my faith in Jesus Christ.
If you are a child of God, He has promised to never leave or forsake you. Steve, Jesus could be a tremendous encouragement to you and make your life worth living even amongst your pain and problems. I would be glad to share with you how you can know you are a child of God and that you can be sure Heaven will be your home when you die.
I sure hope things get better for you and let me know if I can be of any help.
Larry

[Steve]

Larry,

Welcome to the community and sorry that you have to be a part of it. I'm sure that none of us here wanted what we have/had.

It's amazing they even knew what it was in 1974, and even more amazing they wanted to operate on it. It's almost incomprehensible that they would give you the OK to go back to work. Especially such strenuous work!

I would be very interested to know more about the embolization you had done in 2003.

I don't wish to start a religious debate by stating this. I respect your rights to choose your beliefs and will not discriminate in any way towards anyone that has them. However, I do not share them. Perhaps there is "something/someone" out there beyond human scope or comprehension, but I cannot put my "faith" into anything that has been continuously reinterpreted over thousands of years, contains so many contradictions and is frequently peer-pressured upon "non-believers". Nothing about any of that feels right to me and I consider myself to have quite high moral standards.

As a direct response to your offer of sharing with me how I can know I am a child of God and sure that heaven will be my home when I die, I thank you but respectfully decline.

Thank you again for taking the time to introduce yourself and share with the community. Also thank you for your consideration of my dealings with this nasty health condition. I hope you don't continue to have any issues with yours also!

Take care,
Steve