Chiari Malformation Community
Just Need To Talk
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This patient support community is for discussions relating to Chiari Malformation and Living with Chiari Malformation.

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Just Need To Talk

Hey everyone. I was diagnosed in April of 2012 with Chiari Malformation type I and had my first decompression surgery June 2012. Just my luck, the doctor who performed my first surgery messed up. He removed too much bone so my brain was beginning to slump. He also used a material to cover the space that is not meant to cover large spaces so of course it was tearing. My symptoms (horrible headache, numbness/tingling in hands/feet, dizziness, etc.) got worse. I went to see another Dr. in August and he performed my second surgery to repair the problems from the first surgery. Since I had two surgeries within three months of each other the recovery is taking longer than usual. I'm a senior in high school and because of the surgeries I have had to enroll in online school. It's difficult to deal with but I'm pushing through. The pain in my head is still really bad though. Any ideas on how to control the pain without taking so many medications?
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620923 tn?1452919248

  Hi and welcome to the Chiari forum.

I am so sorry Honey that u r going thru all this....goodness, it is imperative u have a true Chiari specialist for this....

May I ask did either of these Drs check u for related conditions?  Such as syringomyelia., tethered cord, ehlers-danlos?...ehlers-danlos can cause u to heal slower too....and rejection of patches that does not consist of the patients own skin.....so tearing, leaks etc....happen with this condition.

The  fact u had 2 surgeries...ouch....so close together, it is wise to cut back and home school....u need to rest and not push so u can heal....

I would suggest if u have not been tested for related conditions to do it now....

Cerebral ptosis, or brain slump unfortunately happens far too often.....

  
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620923 tn?1452919248

  Hi...how r u doing today....do u still want to talk?...We r here.... : )
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1306714 tn?1327260680
I know how it feel having surgeries so close together and it does take longer to heal.  Your doing the best you can and that is taking one day at a time.  Things will get better, but having surgeries back to back does make it hard on our bodies.  Hoping today is a better day for you.
Linda :)
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