Surgery didn't work...

[DeeAnna78]

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 Sally and welcome to the Chiari forum.

  I see you are in the UK...so I know you did not get copies of your MRI...but Drs here and all over actually are not well informed on Chiari and many feel this surgery "cures" us...which it does not...it is done to restore CSF flow and slow progression if a syrinx is present.

Since you have a syrinx have they continued to monitor it since your surgery? when was your last MRI?

  Did you have ALL related conditions ruled out? It is possible you have scar tissue that has formed or  your syrinx has not shrunk enuff to avoid symptoms....the meningitis may suggest a CSF leak....

[71sally]

Hello on April the 10 th four years ago I had a 7 hour long operation for Arnold - charhi malformation with syrinx decompression . It was a painful procedure I had four lumber punctures after the operation one with in hours the other over the following few days . Since my operation four years ago , which I thought was successful I have had ....
Swelling nearly 24/7 hands wrists . Cold hands . My fingers I'm fumbling to do buttons up and do small things . It is a complete painful experience trying to peel potatoes my head hurts near enough continuously as my neck and back and hands wrist .i didn't know this could come back I think it has . I was in hospital couple weeks ago for viral meningitis on the brain   This is where they found a big build up off pressure in my head . Waiting on seeing a neurologist . So fed up and in pain balance a bit off sickly tired beyond tired yet like tonight ( well morning now !) I have had no sleep . My speech goes blurred my throat keeps going totally dry get do thirsty to which I can't quench. So fed up !

[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"

[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.

[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    

[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"