Post Surgery - No Change

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Post Surgery - No Change

Postby gunflint » Fri Feb 10, 2012 8:49 am

I returned from NIH a couple of weeks ago from my 3 month post surgery check-up. There has been no change in either my syrinx size or csf flow rate. I'm not all that concerned as I know that it could take a while for the syrinx to shrink and I also realize that in some cases decompression does noting. I'm just wondering if most other decompression recipients had syrinx shrinkage in the first 3 months or if it took longer or if it didn't shrink within 3 months it's probably not going to. Thanks.
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Re: Post Surgery - No Change

Postby AKShel » Fri Feb 10, 2012 2:02 pm

I had decompression surgury in June 2011. Initially, the syrinx (c4 - t8) reduced in diameter but not length. 6 months post surgery had MRIs done (mostly to check on the MS, which is currently stable) MRIs showed syrinx expanding in three locations since July MRIs. Local NS thinks scarring around dura patch may be impeding CSF flow...also have some related? hydrocephilitis so his option would be to shunt from my head to my gut....I've submitted to NIH....

Post surgery, I noted that some chronic neck/shoulder pain was gone. Other that that, I've noted no other changes and some symptoms are worse.

Hoping you see some improvement or at least no backsliding!
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Re: Post Surgery - No Change

Postby reedy » Wed Feb 15, 2012 8:15 am

hi gunflint, can you remind us what surgery you had done?

FYI (though I don't think its highly relevant here) I had a lumboperitoneal shunt last year but it has not helped my syrinx or symptoms much, if at all. I'm now looking at trying a syringopleural shunt next, though Dr Heiss is not sure that will help either as its likely that my CSF if impeded by tethering in the dura in an area that is very hard to operate on.
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Re: Post Surgery - No Change

Postby gunflint » Wed Feb 15, 2012 9:55 am

I had a PFD done in October. Or as Dr. Heiss refers to it a cranial cervical decompression. I am keeping a close eye on those of you with shunts. I think that I would have to failing pretty harshly before I would get that done.
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