hi everyone hope all is well. i had my surgery 13th july, i have had nothing but trouble since. csf fluid kept leaking from my scar quite severly several times even when i was restitch si they took me back to surgery and i had a spinal drain put in, i then contracted meningitis and few other nastys along the way so they removed it, my head began to leak again so aswell as 2 different types of antibiotics that we later realised i was allergic to and thats what was making me so ill they fitted another drain that then leaked severly so was removed again i then had 2 lumber punchers which they messed up the 2nd 1 and now suffer with bad neck and back spasms. the consultant then came to me and said he wanted to fit a shunt i said id rather not have more surger i wanted to go home so after a couple of days they said they didnt think i would need 1 yet so should ok, they also they decided to tell me surgery had made enough room and at a later date want to go back in and make more room but i've said no way, have i made the right decision ? i'm worse now than i was and to top it off my 10 yr old has chiari and suffers quite bad so i cant keep having surgery!! i do think i may need a shunt afterall if im honest but i dont want anything i dont need doing. anyone else suffered from similar?
the consultant i was under doesnt use dura patches he said and whats a eds? they weren't very good at explaining anything and most of the time i was quite poorly when they came to speak to me or so high on morphine they could of told me anything lol
EDS is Ehlers-Danlos Syndrome...it is a connective tissue disorder many with Chiari do have. Those with it are prone to rejection of foreign matter, the skin is more fragile so stitches and staples can tear causing the leaks.....
So those that do get a dura patch, using ones own pericardium is best, lest risk of rejection, plus I had glue and sterri strips to close the incision.
It is always best to take someone with u when going to these appointments etc....as we tens to get the "deer in headlights" effect with all the info, so u r not alone in that. Call ur Dr and ask was the dura opened....
if so, how was it closed, and in the meantime see if u can get testing for EDS to see if that is y u r having the leaks.
U said they did the LP bcuz of the leaks or did u have pressure?
Ok...u do have ICP then and that is y they r suggesting the shunt.....how long post op r u? not yet 2 months.....
ICP is a side effect for some post op of this surgery.....and u should have known that going in as all major surgeries r a risk and there is no way to know b4 who will or will not develop this condition. I have found many that have do have EDS< but did not know b4 their surgery.......
I don't quite understand. If your dura was opened that would explain the leaks but you say they didn't use a dura patch? Then there's nothing covering it? To hold in the csf? Was your dura opened? I think you may need a chiari specialist. Somethings def not right. Hope you are ok today. Hugs Dana
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