Needs help

[Eric__0]

  I'm trying to find alternative treatments for a severe cervical/shoulder dystonia. I have been following this patient for over two years. He developed severe, constant spasms in the right neck and shoulder area after a cervical fusion. He was previously very athletic, an accomplished, almost Olympic level track athlete. The spasms involve the trapezius, sternomastoid, and scapular muscles and result in his head being fixed and tilted slightly to the right, with very little ROM. More recently he seems to be developing weakness in median innervated muscles in the forearm and APB. He needs another EMG. He has tried many drugs, at least 10 botox injections, a spinal cord stimulator, and a couple of radiofrequency treatments to the cervical area which seem to help his headaches. He also sent a tape to a dystonia expert, a neurosurgeon in Florida, but apparently is not a candidate for this surgery. Does anyone out there have any other suggestions?
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Sounds highly complex. I assume you sent him to Dr Arce, who is the only one I know of who does the selective denervation surgery for refractory dystonia.
Perhaps consultation with a movement disorders specialist is in order. I suspect that if you are posting here, you've already tried that, but it's worth mentioning. That physician could take a fresh approach, confirm or modify the diagnosis, evaluate the trials of prior medications (trihexiphenidyl, clonazepam, etc), evaluate the prior BoTox treatment.
Some patients with dystonia are legitimately so complex that there isn't much to do for them. But I'd sure hate to conclude that here without taking a look.
If you are interested in a CCF movement disorders specialist, have the patient call 800 223-2273 and ask for neurology appointments at 4-5559.
Other major cities (NY, Chicago, Atlanta, Houston, etc) have highly experienced movement disorders specialists as well. I hope this helps. CCF MD mdf.