Klippel-Feil Fusion - Continued Issues
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I had a spinal fusion about 7 years ago due to accidental discovery of klippel-feil. I was born with it (obv.) and in the past year or two the part of my spine that was further fused keeps getting worse and worse. I've taken medications for nerve pain, for arthritis, and naproxen. I have had a little of a lot. But nothing seems to help this pain. I've even tried hot, cold, and stuff like Voltaren and Icy Hot. Nothing. Works.
Whenever the back of my neck gets hot the pain gets worse. Like, if my hair is down all day or I am sitting with a pillow on the back of my head and my neck is resting on it.
I've seen many doctors, mine is useless and I'm trying to a neurologist but it's not working. So I'm wonder if anyone has ever experienced the same and has any advice?
(A little bonus info about the surgery. My bones were fused from birth. They accidentally discovered the bone clump and decided it needed to be further fused. I was 17 when I got the surgery. They put metal over the already fused bone to fuse it more, then put bone shaved off my hip over it.
I've seen an orthopedic surgeon, a pain clinic, my regular doctor and a chiropractor and nothing and no one seems to be able to help whatsoever. I'm a little desperate right now...)
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CHICO_MARX vb031995
Posted
Your last stop should be a competent neurosurgeon. A good one will recommend a CT/Myelogram with contrast as this is the "gold standard" spine test. It gives the docs the absolute best image of your spine. That should help the neuro see what's actually wrong and present you with a treatment plan to alleviate your pain. As you "interview" different ones, see if any have experience with your exact condition. This might help you narrow your choices down before you book an appointment.
Personally, I've had four spine ops including two fusions with one more on the way in late January. I know what it's like to live with the pain caused by spinal nerve impingement so I can certainly sympathize. I hope you find a good doc and get this problem resolved as quickly as possible.