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Post by Chelsie on Nov 14, 2013 21:41:23 GMT -6
I have spinal cord tumor in the middle of my spinal cord (T-12). They can't remove it without cutting my cord in half, so the only option was radiation. I did 28 sessions of precision radiation. Before treatment, my tumor was maybe 4mm, and because of the radiation it swelled to 7mm. That doesn't seem like a large tumor, but when its smack in the middle of the spinal cord... well it is. Its been 9 months from the time I stopped radiation, and my tumor hasn't grown anymore. But I am stuck with the increased pain, down my legs and in my lower back because of it. Before radiation I was only taking 300mg Gabapinten 3 times daily, Now I take 900mg 3x daily! Not to mention the Soma for muscle spasms, and the Norco for breakthru pain. The problem I am now having is, I am still in a great amount of pain. What now?? Surgery isn't an option for me. Any ideas?
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Post by Lavonia on Apr 21, 2014 12:35:33 GMT -6
I was going to update my post. When I had surgery, it was the consensus of the Barrows Neuro board for me to go through radiation. I knew with a non-resectable tumor this was my best hope. The oncologist more or less said that he didn't think I'd have major side effects from the radiation, but if I did it would likely be bladder related (and a small risk for cancer which is always a possibility with spinal radiation). Six months after treatment I had no feeling below the belly button, afterwards some nerve sensation has come back. All nerve sensation is extremely painful.
I went from walking with a cane with low-moderate pain in the legs and no visible bladder problems to a major change since radiation. After surgery I could feel my legs again and I was happy for that.
Post radiation I've lost all bladder control, pain is severe even with pain management, and now weak enough that I'm barely walking with a walker and wheelchair outside. The pain is of concern, I've wondered if I'd survive it but I keep pushing. Probably 1/3 loss of feeling in the legs, what does have feeling is painful.
I still don't know that I saw another viable option outside of radiation, but I can't really make a good comment about it until a couple years down the road. I'm in year two of healing. Just a point of note, it is not a simple procedure and I would suggest following up with a couple neurologists before having it, to get a better idea of what you will be in for. I don't necessarily feel an oncologist can give you a good idea of just how difficult a procedure it is for spinal patients. It's definitely something that shouldn't be taken lightly.
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Post by pringleman on Apr 23, 2014 1:48:03 GMT -6
I am now 6 weeks post 28 doses of radiation and have not noticed any major problems yet. My main issue was burning on the chest which I still get from time to time. Oncologist told me the real issues will kick in at 5 months and can occur up until 5 years later. Not cheery news but at least the tumour is gone for the time being.
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