issues yrs after surgeries

Question

Five yrs ago i had my first decompression and was unsuccessful to say the least,one yr later second one withentrance to dura and removal of c1 and c2. Was good for a month then vision issues,i went completely cross eyed,later known to be caused from psudotumor cebri,excuse sp plz. Tons of meds latet and 90 lbs less due to topamax,it helped.now since 2009 i have horrible back pain,neck pain,awful insomnia that was never an issue.ive been to pain clinics,shots ,meds that had be addicted,not a fun time ,also have a child with CP i care for who iswheelchair dependant .makes my issues worse,the lifting etc. Id like to know of others post op this many yrs that still suffer,but with new issues.i think its not my chiari but something else docs blame it all on the ACM.its frustrating.anybody else have these issues???

selmaS · Answer

Hi....I guess it all depends on what they did for  u., if it was just PM while in the hospital and testing, they may want to see if PT will help b4 they suggest ne other treatment, if u had surgery, then I would be concerned about starting PT on day u r discharged.....

 Wow u lost weight on TOPAMAX...what dosage did they have u on? I didn't lose ne weight....

KSt1king · Answer

I was admitted here in MS sat.leaving now finally after few days of tests. Given the all clear though as far as fluids go.im sitting in a new neurologist. Office as i type this,sent directly here after discharge for some eye test,not the normal visual field..hmm. sry,the name leaves me. Im so confused whats wrong.they put me on a pain pump which was great,three days of relief,but now its back,same crap.maybe im just gonna be like tjis .they restarted my topamax,which last time i got down to a sickly 118lbs,im 5'8 it was bad,ill update but i think im a puzzle they cant work,jumpung feom doc to doc.excuse the sp.im on a tiny cell.hehe.ty for letting me vent. Alsi, PT the day of discharge????

KSt1king · Answer

Also,base hosp.i saw eye specialist for pseudotumor,mri,etc.but def.go off base for other,they deal with sneezes at base hosp mostly.
I was at sunrise for post op and surgery,theyre great too

KSt1king · Answer

Oh,least u r at nellis,left wed.hehe, dr sieff across from sunrise childrens hosp.on maryland pkwy.tje best,he deals with many chiari patients amd i trusted him completely.goodluck,vegas had great neuros

KatieMM2582 · Answer

I just joined this site tonight in hopes for some feedback and support.  I am an AF wife here at Nellis, and was just diagnosed with Chiari and Syringomyelia.  Can you give me some insight on which Dr.s you were seen by and who you preferred?  I am scheduled to see a NS off base next week, and a bit anxious!  I have also considered applying for SSDI.  I would love any insight you have for me being that you went through all of this here in Vegas!  Thanks!-and Im sorry if this is the wrong place to post this, still learning my way around and got excited when I saw military and LV! :)

selmaS · Answer

Hi...we have so many with the military that have this issue, u were lucky to find a Dr that knew Chiari as it is hard for us outside with more access to Drs to find one that is really well informed.

 Being in limbo to find one took me a yr,,,,so I know how u feel

KSt1king · Answer

Issue has been this with med care, we r military so we have been travelung five days from vegas to biloxi ms,i had a chiari specialist that was awesome in nv.need to establish care here,could take wks with referrls,saw er last night,theu couldnt help much.so im in doc limbo.its been so long since my pros

linnielou232 · Answer

I also had this procedure done but they used muslin for my second patch and had me on a drain for 10 days.  That was the hardest part.  They keep the fluid drained so the stitches will attache easier.  It was a long road but it worked.  Wishing you the best. and Let us know how it goes. 
Linda :)

selmaS · Answer

Hi and welcome to the Chiari forum.

 As frownless has indicated it could be a pseudo.....but there are several other issues that can develop post op.....ICP, POTS, cerebral ptosis, 

 The there are related conditions that may be underlying .....tethered cord, ehlers-danlos that post op can cause more issues to occur.

 Have u had a MRI recently?

 And did u use the same NS for each surgery u had?

frownless · Answer

It could be a pseudomeningocele. You can get them after brain surgery and can lead to aseptic meningitis which give you headaches, neckaches, insomnia ect. I think this is what I have right now, it also makes me extremely anxious and jumpy, also I get bigger headaches if I do any exercise.

 This isnt a solution, because you can only be on them for a limited time, and even then they mess with you, but if it is aseptic meningitis a day or two on dexamethesone should relieve the pain, but not the insomnia. If this works then I would assume its a pseudomeningocele, they should be able to see it in an MRI or CT anyway though. The treatment for this (what they want to do to me) is to repatch the dura much better using my harvested pericardium, then leave you upright and attached to a spinal tap for a week to let the dura stitch properly with lower csf pressure. I hope this helps!