Worsening Symptoms after Decompression Surgery

[Yvonne01]

I am so happy to find a support group for chiari. I was diagnosed July/06 with Chiari malformation I.  I had been going to doctors with facial numbers, HAs, dizziness, ringing in ears, tingling, fatigue ,unsteady gait, insomnia, diff swallowing, reflux for over 2 years before being diagnosed. I was intially diagnosed with migraines by a neurologist but continued to get worse. Another MRI was done and she referred me to a neurosurgeon who recommended occipital decopression surgery which was done sept/06. I did feel a little better months after surgery but never fully recuperated.  About a 1 1/2 years ago things just got worse with severe headaches, severe fatigue, tightness and pain in back of head/neck and shoulders chronic nasal pressure and congestion. Still nothing shows up on the MRI when i went back to the neurosugeon. I've had physical therapy twice. I went to another neurologist who has started me on Topamax with has a lot of side effects and it helps a little. Will I ever be 100% again? Its hard with a 2 kids and husband to care for. I am working part-time now b/c its so debilitating. Is there a chiari specialist close to the Mississippi,  Louisiana, or Tx area. I need answers?


Thanks

[*Stormy*]

Welcome!

I have all of the symptoms you described (plus a few more) and just had the surgery 4 weeks ago. So far, I am disppointed in the results too, the only improvement is that my walking is not as stiff but still unstable. I would be interested in what you find out, I know others have mentioned some other related syndromes (TCS, EDS) that could be continuing your symptoms so hopefully you can get that checked out.

Good luck to you!

[shanmomof3]

Hi and welcome to the group! We're getting quite a few southerners here lately lol but most of us do have to travel to get the proper treatment. Glad to have you! Shannon :)

[selmaS]

Hi and welcome to the Chiari forum.

I am sorry u r feeling worse......and I am not sure u will feel 100% , but u should feel better than u do now....were u checked for a syrinx or tethered cord?....u would need a MRI of ur lumbar and thoracic spine in addition to the cervical and brain MRI's they have been doing to check ur PFD area.

U could also have DDD or a bulging disk  or spinal stinosis...not a chiari issue right out, but as chiarians we r prone to getting these issues sooner in life or at all.


We do have a list of drs and u should research all on the list as some may be true chiari specialists and others r NS that have chiari experience and u must find the dr right for u.But is it a good place to start.This list is compiled from the members here of drs they have been to and liked.

Glad to welcome u to our little family and hope u find the answers and support u seek.

"selma"