I have chiari I with a tiny syrinx. Well, when I had my mri done several years ago,the syrinx was tiny. I'm waiting for results from an mri I took a week ago. I noticed a thread on here that said the reason we get chiari surgery is to prevent the formation of a syrinx. What if you have one already? I read the damage could be permanent and lead to paralysis. Has anyone ever heard of one going away on its own without the surgery? Just curious. And has anyone here had a syrinx that did not go away after the surgery? Also, for anyone who had drop attacks,did your drop attacks go away after the surgery?
Thanks for your time.
Hi...well, I did not have a syrinx, but know the surgery is done to restore CSF flow...it is the obstruction that causes the syrinx to form....when the flow is restored it is hoped that the syrinx will shrink.....many that have had this surgery have had the syrinx shrink....I do know that they may come back, scar tissue can form causing another obstruction.
I have also heard from a few that the syrinx did not shrink.....
And I did have drop attacks and to date have not had one post op...it will be 4 yrs this May.
Do make sure b4 u consider surgery u visit a few Chiari specialists and make sure they rule out ALL related conditions as they can affect how u feel and heal and if the syrinx will shrink.....I really feel u could develop excess CSF as a result of having undx'd EDS.
Many times the Dr may know u have EDS but not be aware that u can not have foreign matter implanted as ur body will reject it causing infection or the CSF to not be absorbed as it should.
Got my MRI results and the syrinx did not go away or shrink on its own. It actually grew a bit, but not much (from 1.7mm to2mm at its greatest width). It is still a tiny syrinx and that's a good thing.
I am so glad to hear that you haven't fallen since your surgery. I fall several times a week so I know how much a relief it must be for you not to have to deal with that anymore. It's also very very encouraging for me as I believe if that was the only relief I could get from the surgery, I'd be more than thankful.
Please tell me what EDS stands for so I can look it up before seeing doc.
Thank you so much.
EDS is Ehlers-Danlos Syndrome...it is a connective tissue disorder that many with Chiari have, there is some relationship btwn the 2...not sure just what it is, but those with Chiari are prone to both connective tissue disorders and auto immune issues as well.
We do have an EDS group here with informative video links -http://www.medhelp.org/forums/Ehlers-Danlos-Syndrome/show/417?controller=forums&action=show&id=417&camp=msc
There is also some info in the Health Pages -http://www.medhelp.org/health_pages/list?cid=186
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