Well in August of 2012 I had a craniotomy w/a chiari decompression as well as a laminectomy of my c1 and c2, with in six months of having surgery my symptoms came back. now its been almost a year and my pain level is worse. I'm seeing a nuerologist and after getting a cat scan and mri, both saying it appears that they cyst is back, this doctor is telling me its a fluid filled sack that im fine. I sure don't feel that way he also says chiari clears up after surgery that it goes away. well I say tell my body that...
can any one give me some insight please.. sincerely a concerned father
I assume that by "fluid filled sack" they mean that you've developed a pseudomeningocele? Does that sound right? If you don't feel well, please keep pushing for answers. Sometimes they resolve on their own, but sometimes they need to be treated. I had a pseudomeningocele that was essentially creating the same level of pressure that my chiari created. My NS kept saying (for more than a year) I was fine and it was normal, but I finally found a new NS who did another surgery because he suspected a CSF leak in my dural patch. When he got in there he found a hole the size of a quarter in the dural patch -- obviously that was not going to resolve on its own. I know my situation is pretty extreme, but my point is this -- you know your body and you know how you feel. Trust your gut and keep trying for answers if you think something is wrong.
p.s. The idea of an NS telling you that Chiari "clears up" after surgery makes my blood boil...
I too had a pseudomeningocele after my first surgery, it caused all my symptoms to be just as bad as prior to surgery and it took me a year to get someone to listen that something was wrong. The NS that found the pseudo did a second surgery which resulted in more complications and a third emergency surgery. I continued to leak and eventually had a forth surgery to remove the synthetic patch completely and they used my tissue and finally I have been feeling well for a few months! It has been a long three years and at times so frustrating to try and figure out what was happening but now that the pseudo is gone I feel much much better! Good luck finding help and feeling better, it can be a long process! A pseudo can go away on its own but for some of us that does not happen!
The members have all suggested what I am going to "ditto".....and add that u should find out what type of patch was used if u had a dura patch....and were u checked for ehlers-danlos? As that can be the reason u r having this issue.
Many times those that develop a pseudomeningocele have an allergic reaction or just reject the patch....so do look to see if u have EDS and then see about how u can reduce the symptoms u r having, it may mean another surgery to replace the patch...with one from tissue harvested from ur body...scalp or thigh is generally where they take the tissue from.
I have EDS and had tissue from my scalp harvested and I was fine post op.
May I ask where u went for ur surgery? and where can u go next....travel wise as it does not sound like ur Dr is concerned in correcting this issue for u.
Well I had my surgery at cedar Sinai but in December I moved to santa maria ca. and had to find a NS out here and this guy does not seem to understand that im feeling realy bad again, or he just don't care. I don't have regular ins im on medical but still don't think it should be pushed away from the table as quote unquote normal... my pain I getting worse and worse every day and I don't know what to do but keeping up with search
U should be able to get a follow up MRI to see if that could be an issue...CSF leak etc....and they should know to look for a related condition like ICP, pots, or cerebral ptosis....all can be the after effects of this surgery.
Plus ne underlying condition not found B4 surgery can also be an issue.
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