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!
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?
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.
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 !
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....
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