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
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.......
SO was ur Dura opened?.....
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?
theyv stopped th leaks now btw just pressure build up is double what it should be when iv had lumber punchers and i can feel the pressure my eyes feel like they are popping out of my head xx
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
Hi...I am so sorry u r having these post op issues, and I have to ask do u have EDS and what type dura patch was used?
I would look into the fact it could be u rejecting the patch.....b4 u go with a shunt since u mentioned u continue to have leaking issues.
JMHO