in need of help!

[burdzmom]

good morning all
I am in new jersey and am having a really tough time.  I have bounced all over looking for a doctor to treat me post operative.  I had my ACM decompression in February of 2010 and am really struggling with pain issues ever since.  as of now, I am seeing a pain management dr at UPENN but, he's a pain management dr not a chairi specialist.  I don't take narcotics and am suffering with pain on the right side of my head, base of skull and neck issues.  I have this terrible "popping/crunching" noise at the base of my skull top of my neck area that happens when I turn my head (likely from the c1 fusion I guess)
every scan I have had is not showing anything "surgical" that needs to be addressed. However, the pain I am living with daily is getting unbearable.  I am not sleeping due to positional pain. it wakes me up after 1-2 hours of sleep. my mood is horrible and causing my depression to be pretty terrible.
Does anyone have a recommendation for POST-OPERATIVE chiari care? I don't mind traveling at this point. I just really need a doctor that knows that a chairi patient is different than anyone with "chronic pain".
ANY suggestions and advice are welcome!

I hope you all are doing well and getting thru the holiday season. God knows its difficult with all of the things going on!

[selmaS]

  Thanks for refreshing me....I do recall ur situation now.....

U may want to see if u can have a Dr in ur area do testing for related conditions and rule them out just to make sure what u r dealing with is remnants of surgery.

Keep me posted what u find out on this Dr....and if he can offer u help.

Pain is one contributor to depression....and I know it can be difficult to ward off  as it is so encompassing....but do try to focus on ur little ones and enjoy them....even if u can not do what u want, u still have them <3

[burdzmom]

hi Selma
I had decompression, crainectomy and c1 fusion in feb 2010. my NS wrote me off after surgery and Ive been left to struggle to find doctors ever since. i have tried several different treatments all with little to no success.  i have no emergent issues at the present time that would require a surgical intervention (according to recent imaging)
I had my cerebellar tonsils herniate 14 mm and compress my spinal cord and brain stem - resulting in damage to those areas now.  I deal with a while bunch of issues daily and the pain is often unbearable.
No EDS or syrinx that I was made aware of. Had a difficult recovery (meningitis in the hospital) and never have been the same.  
My ACM was discovered after I collapsed in front of my small children, thankfully at my mothers house and not home alone with the girls.  It was a sudden onset and no diagnosis was made prior to this episode. Im very lucky to be alive.
Dr. Vez is somewhat close to me. Id be interested to talk to any of his patients if there are any on here.
Im still struggling and my depression is pretty bad because the pain is often debilitating.  Hoping for a miracle at this point. Im too young to have to live like this :(

[Smiley1007]

Hi im from NJ too.  I see docs in philly at Jefferson hospital.   I know Dr.Vez at capital regional health in trenton nj is very familiar with chiari.  Also Dr.Mclaughlin in Hamilton I think.  

[selmaS]

  Hi...post op care is non existent....we have to find the care for ourselves and y it is important to find a good NL b4 surgery to be with u along the journey or ask ur NS for a referral to one that is well experienced with Chiari and related conditions.

I do not recall if u had EDS< and other related conditions ruled out or what all was done during ur surgery....

Did u have a lamenectomy, dura plasty?....what all was done during ur decompression?

How soon post op did this pain start?