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On going nerve pain from Post op spinal cord surgery

MazkimMMazkim Posts: 1
Hello, 2 years ago next month I had sugary for an AV Fistula found on my spinal cord.
Leading up to the finding of this prognosis, I visited Dr after Dr over 18 months continually suffering with pins needles, stabbing pain and numbness. I felt like I was sitting on a rock and my right leg was constantly stinging and burning. I tried everything possible from medication to natural therapies to no avail.
It appeared to me that my skin was hurting and very sensitive to change in weather, touch and even wind blowing on my foot and leg.
Once the diagnosis was discovered I was thrilled that the pain would be over. No one told me that this may not be the case. The Neurologist who found my AV fistula was thrilled as apparently it was a hard thing to find and he had only diagnosed a handful of people in his time.
I had successful surgery 2 years ago last
month. When I woke up from surgery, the top of my leg from the knee to the hip as well as parts of my bottom (internal and external) were totally numb and from my knee to my toes were still burning and stinging. The surgeon explained the fragility of my nerves and apologised that he must have severed some nerves in surgery.
Two years later and there is no change. have tried lyrica, topamax and other medication but they all give me dreadful side effects. I do take endep at bedtime and are lucky enough to be able to sleep. It appears that my pain comes from touching my skin (right leg and foot) so clothing, weather, showers, etc all cause the pain to increase.
I'm aware that nerve pain is slow to heal but surely after 2 years I should have some relief.
I have agreed to travel overseas with my husband in November because it's sad that he has to miss out because of me. We are 62 and otherwise healthy,
I am asking please for any help anyone can offer.? am willing to try anything. Life shouldn't have to be this unkind although I am extremely grateful that I can sleep at night. I read where many cannot. Thank you for reading this. Mazkim

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