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- Mon Sep 01, 2008 10:58 pm
After years of chronic pain, I found myself in agony and with bowel and bladder problems in March. Eventually, my gastroenterologist sent me to a neurologist, who surprisingly found a syrinx (c5-c7).
The neurologist clearly doesn't know what to do next, and when I asked if I should see a specialist, she said yes (although she didn't suggest anyone).
I am wondering at what point in terms of evaluations I switch from trying neurologists to neurosurgeons (based on what I've read it seems like I definitely need surgery; the neurologists themselves don't know much about the disease, and my primary hasn't even looked up what a syrinx is -- even though she is giving me recommendations on what neurologists to see!)
Thanks so much
| John Kenyon, CNA
- Sat Sep 06, 2008 12:13 am
I would think now that a syrinx has been identified the neurologist would have referred you to a neurosurgeon to evaluate and try to determine the best route to relieving the pain. The fact that you have pain with a syrinx is unusual, as most often there is a reduction in sensitivity to pain, but there's always the exception that proves the rule.
The usual surgical approach to these, when surgery is advised (by a neurosurgeon)
is to surgically drain the syrinx and, if a tumor is also present, remove it at the same time.
If your insurance requires a referral then you'll need to press either your PCP or neurologist to come up with someone; an alternative, if permitted by your insurance, would be to research the matter and choose one yourself based on reputation. You're definitely at the point where you'll need the evaluation by a surgeon, even if surgery is, in the end, ruled out as a fix for this.
I hope this is helpful. Best of luck to you and please do follow up with us.