size of a syrinx

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size of a syrinx

Postby Mizzou1983 » Fri Dec 09, 2011 11:45 pm

If you do not have chari or decompression surgery doesn't stabilize your symptoms and most doctors you see say your syrinx is to small to operate on. Is it that my ns doesn't know or is it that I just have to accept my pain and numbness symptoms getting worse. My syrinx is 4 mm wide and goes from c3 to t9. This is something that's drives me crazy because it makes my family look at me like I'm crazy. If your systematic it doesn't matter right something needs to be done?
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Re: size of a syrinx

Postby phyrehawke » Wed Dec 21, 2011 12:16 am

The criteria for syrinx surgery is more than just being symptomatic. What you gain from the surgery needs to outweigh what you risk from the surgery...and it's a risky surgery. You basically have somebody cutting into your spinal cord and that is still not an exact science. You have numbness and pain now, but can you still walk? Do you have some bladder and bowel control? Do you breathe on your own? Things can go wrong with spinal cord surgeries in a *major* kind of way, so any respectable neurosurgeon takes those risks very seriously. Most people can get used to some numbness with time. Most pain can be managed with medications. One of the reasons I've heard a NS give for doing the syrinx shunt surgery is a 5+mm wide syrinx AND this was causing the patient to become wheelchair bound and incontinent. In that case the patient was not risking losing much by having the surgery done.
But going from numbness and pain to wheelchair bound and incontinent too...that wouldn't be a good deal, would it? That's what the doctor's mean by "your syrinx is too small to operate on".

That's a long kinda wide syrinx you have and I can definitely see it causing you problems. Not being a surgery candidate does not mean you are asymptomatic (Oh, I wish!!). And the pain can be wierd and severe when it's not properly managed. So before your family judges you they ought to take a good look at what you are coping with. If pain is making you crazy, you need help with that, not their judgment. This is not easy stuff to cope with.
Rozanne/phyre
"A path of awakening would never suggest that we should be a passive and unwitting spectator of our own repeated disasters, but should turn the power of our attention to untangle the web of complexity." Christina Feldman
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Re: size of a syrinx

Postby jfreema » Wed Dec 21, 2011 8:04 am

Make sure to get a second opinion on the Chiari. I was told mine was minimal, but when I looked at my own MRI it was easy to see it wasn't. Then 2 NS said it was causing my syrinx. I had decompression, and the syrinx disappeared. Best of luck to you!
Jennifer
Pre-Op: SM C2-T4 (2mm C2 to C5, 6 mm C5 to T1, 2 mm T1 to T2, 7 mm T2 to T4), CM 8 mm
PFD surgery May 2010
Post-Op: Syrinx has completely disappeared - no evidence at all!
Surgeon: Dr. John Heiss at the NIH
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