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syringomyelia

Recently diagnosed w/possible syringomyelia. Also did research and found nothing positive about the disorder. Have most of the symptoms like pain in upper back around the shoulders,muscle spasms, pain up into the neck leading to severe headaches, weakness in both arms along w/ possible retear of the left rotator cuff(unrelated injury). Absolutely miserable at work standing for 10 hr. shifts. Percocet is best pain relief, perafon forte for spasms doesn't help, darvocet for headaches gives sporadic relief. From research, the best cure is surgery. That scares the heck out of me. Ortho doc wants me to go to Johns Hopkins or Univ. Of Penn. Anybody have positive results that I can hold onto while the final diagnosis is made? Thanks.
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From drumby562 about syringomyelia. Thanks for your answer. You've answered and confirmed how I'm thinking of attacking my problem, although things aren't moving very quickly. I need to talk w/PCP, get his opinion, maybe referral, maybe talk w/previous PCP, a great doc that I REALLY trust, then decide if I want to proceed. My brother is advising me to get a different, less physical job, then see how the pain goes, and forget about more docs. I would rather definitely find out what's wrong, get prognosis, then decide about a new job. Ortho. surgeon said he couldn't do any more for me. Do I need a neurosurgeon or specialized ortho. doc? This wasn't mentioned during app't. What type of specialist handles this type of problem? Please reply soonest and if possible, could I correspond w/you personally to ask for advice and guidance? I'm scared and VERY nervous. Thank you very much!  
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Hi drumby.

If this is indeed syringomyelia, then surgery will be the best option if medications fail.  I suggest you discuss with your surgeon the risks involved during and after surgery.  I've read that complications from these procedures are as high as 16% (fluid problems, healing problems), although I think that's why your doctor is referring you to a more experienced center to minimize these complications.

About 70% of those who undergo surgery had complete disappearance of pain and the remaining would have some residual but less severe pain.

Thoroughly discuss this with your surgeon and I hope you'll be under the best hands for this operation.  Be strong. Good luck and God bless.
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