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Chiari Malformation Help!!!

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Unread 11-29-2012, 12:34 AM   #1
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Default Chiari Malformation Help!!!

i am 17 years old and in August of 2012 i had been diagnosed with chiari malformation. i have a syrinx at the top of my spinal cord and another one right about a herniated disc that i have in the t-12 region....... my symptoms include extremly bad headaches, neck pains, shooting pains down my spine, and numbness to the point of brief paralysis in my legs..... i met with an amazing neurosuregon at New York Presbyterian Hostpial in the Cornell Weil College...... my decompression surgery is set for Decemeber 19th 2012..... just 20 days away...... my nerves are through the roof and im praying i dont have a bad experience with recovery......... after all i am 17 years old and all i want is to be able to live my life normally again because my symptoms have taken me out of work and leave me home from school plenty of days......bottom line is my life is no longer the same....

Does anyone have any tips for me of what i should do before or after surgery to help with my recovery and procedure? im still so young and am extremely nervous for this whole scenario!!! PLEASE HELP!
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Unread 01-27-2013, 10:49 AM   #2
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Default i can relate

hey my name is brooke and i was diagnosed with Arnold Chiari Malformaion 1 when i was 15. I am now 19. I had that surgery in January 2011 about two weeks after i turned 17. I was scared as im sure you were but it went ok. After my surgery tho i developed a syrinx at the top of my spint between c1 and c2. Plz look at my profile and read my story to fullyn understand how that went for me.
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Unread 01-27-2013, 08:59 PM   #3
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Default Me too

I was just diagnosed in September with Arnold Chiari I. My symptoms just started from one day to the next. When I saw my local neurologist, he diagnosed my symtoms of numbness with depression and stated the Arnold CHiari had nothing to do with it. When my symptoms progressed to where I couldn't be upright for more than 30 minutes at a time without my head feeling like it was bulging my hospitalist doctor friend reffered me to a Neurosurgeon in Houstin,Tx which is about 5-6hrs from where I live. I had to litterally ride laying down in the back of the van the entire way. When I saw that surgeon, it was clear to him that I needed surgery and penciled me in within a week. It was really sudden. My surgery was Nov 2,2012. It was a kind of pain thats different from anything I've ever felt, but with pain medication it was manageable. I was told I was going to be in the ICU for a few days then downgraded to the Neuro floor. When I woke up after the surgery I was placed on the regular floor. Apparently the surgery went so well that I didn't need to be in the ICU. I was only there for 3 days then sent home. I'm still recovering but every so often I feel normal, like it never happened and I tend to over do it to where I feel like I'm going backwards. Just a tip... Don't over do it. Even though the outside of the incision is healed, that doesn't mean that the inside is healed. It takes longer for the inside tissue to heal than skin to reattach and scar. The doc said it will be atleast 6 months untill you start really feeling well. I guess I have to wait too. Good luck. Hope your surgery went well.
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