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spinal cord surgery survivor
Well here's my story. I am 49 years old and am male. In 1985/1986 I had 2 laminectomis to remove herniated disc, c5 c6. I was fine until 2005. Hands started burning. Went to Dr, got MRI and he said it looks like u need c5c6 c7 fused. So I had that done. It was done from front of neck.
2007, my hands were burning again so went to Dr and got MRI, he said looks like scar tissue has formed in previous surgeries. He said he can remove it but would have to go through the back of the neck like 1985/86. I said OK. He said I would be home in 2 weeks. Boy was i and he in for a surprise!! ¡!!!!!
He opens me up and sees tumor, nuerofibroma schwannoma that is about 3/4s of an inch and has penetrated the spinal cord dura and the spinothalamic tract of the cord , which by the way there are only 15 cases where that has happened !!! Oh boy !!! Now its a 9 hour emergency tumor removal. I wake up, excruciating pain. Can't feel or move legs. After 1 1/2 weeks in ICU, they transfer me to level 1 spinal rehab where I lived for 1 year. Legs finally started to move an inch after 2 months. Long story short, took 6 years to learn how to walk again and I'm proud to say that I went from wheelchair to walker to 2 canes to 1 cane and am now cane free. I still have diminished propripception but no where near what it was when I started to learn to walk again. Now I have permenant damage to cord. I suffer from sciatica in both legs and feet. Hands still burn too. Now I have seen posts on here where people say you can't have sciatica from neck, OH YES you can if cord is damaged. Dr said tumor removal damaged the sciatic pathways in the spinothalamic tract in cord at c5 c6. I been to 6 other drs and they all agree, yes you can and I am proof of that. I've had MRI to check rest of spine and the rest is fine. Thank god!!!!. Now yes the pain is bad but I am on nuerontin, 3600 mg a day which is a very high and dangerousy dose but at least I'm walking !!! Drs didn't think I would walk again. I proved them wrong! Now listen to how rare this tumor is, all drs said that for nuerofibroma schwannoma that penetrated the spinal dura there are only 100 recorded cases in the history of this and I am 1 out of the 100. Now listen to this. !!! I recently met a women in hospital that had same exact tumor also penetrated the dura hers at t12. Now we are 2 out of the 100 recorded cases in the history of that. That is amazing!!! We will now be friends forever!!! I have been through allot but my grandma always said, " there's always someone in the world worse off than you". And she's right. Even though I am in pain everyday 24 hours 7 days a week with no break. I am walking and I met a wonderful woman who knows exactly what we go through every day. When there are people who will never walk again !!! Grandma you are right!!! I thank god for what he's done for me and pray for those less fortunate than me. To all spinal cord sufferer's, even though things may not be good for you like me and the woman I met, keep your chin up , there's always someone worse off than you. I witnessed it I live it everyday. If I can help anyone here feel free to ask.