Surgery didn't work...

I was diagnosed with an 8mm Chiari malformation in April 2007 and I had surgery in May of 2007. I had what was called a cranial decompression with a facial lata-graph.  I was okay for a couple of months after the surgery but now my symptoms are back, worse and some new.  I have since seen a neurologist whom I did not care for. I feel like people think I am making it up. I have learned to live with the headaches, neck pain, cold hands and feet as well as other frequently occuring symptoms. Should I try to see a specialist? Go back to my neurosurgeon? I am at a loss and would really appreciate some help. Thank you!

[selmaS]

HI and welcome to the Chiari forum.

Besides the symptoms, y do u feel ur surgery failed? Did u have MRI's after surgery?

It is possible to have symptoms after surgery as there is no cure, but I wasn't sure if a dr said it failed or if u feel it  has failed.

If this were me. I would find a chiari specialist and get new MRI's and see what is going on. Have U been checked for a syrinx?...tethered cord?.....Ehlers-Danlos?

Not knowing who ur NS was/is and if he/she is a chiari specialist I have no idea as to if u should return or not, but I wonder who has been monitoring u since surgery?

"selma"

[DeeAnna78]

I really do feel that the surgery failed and even though I really liked my NS, he is not a chiari specialist. I have been checked for syrinx but they said they did not see one. I thought that maybe that's what was going on because of the symptoms I was having but an MRI said otherwise.  When I went back to my primary physician, he said that I didnt need to go back to my NS but to a neurologist, whom I really did not care for.  They wanted to put me on Lyrica, a sleeping pill and physical therapy.  After I got my staples out after surgery, I have not been monitored other than me seeing my physician several times for new and worsening symptoms. What to do now?

Dee    

[redkim]

Before & after my surgery (Jan 2009) I never met with my PCP.  I saw my NS two weeks after, five weeks after, nine weeks after, three months after, six months after.  Then I was given the "all-clear" and told I didn't need to go back and see him unless I was having issues.  He said I need to have MRI's every six months and that I could come see him to review those or they could just send him the CD's to review.  I did just e-mail with him.  He is about 1.5 hours from where I live.

I don't have an NL, but maybe I should get one.  And I haven't seen my PCP in like two years.

The NS that did my surgery was my 2nd opinion, but really the doctor I wanted to see because he is a "specialist".  I saw one NS locally, then asked to be referred to Dr. Won.  He is actually a pedatric NS, but see adults and does about 4 Chiari surgeries a month.  It can't hurt to see a specialist.

[selmaS]

HI DeeAnna,

I agree a chiari specialist would be best at this point.Not sure where u hail from, but we can try to get u some names of chiari drs and u should research to be sure they r a true chairi specislist.

let us know where u r from, and keep in mind u may have to travel to get to a chiari dr.

"selma"