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MY CHIARI MALFORMATION JOURNEY 2

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Published on Mar 31, 2008

A SECOND SURGERY WAS NEEDED AS MENTIONED IN THE FIRST VIDEO.

Comments • 14

Marti Babb
With all that you've survived, I really wish you hadn't filmed this while driving! My cousin died on my birthday 2 weeks ago. Knowing how difficult & life changing Chiari is... you are caring precious cargo. NO DISTRACTED DRIVING.  #ITCANWAIT 
Jeremy Davenport
im 14 and i had thos done 2 weeks ago and the worse thing is turning my neck but my brain tonsils slipped into spinal coluum and casue serve headache but im ok now i think going monday to get stitches oout
kaitbailey14
I had chiari decompression surgery in 2010 when i was 14. Surgery wasnt too bad until i was in recovery. I was in the hospital for 3 weeks and ended up having fluid on my brain. To this day i have headaches daily and it has effected me more than i would have thought. Still waiting for some relief!
Michele Coulter
ThePoppy1806- to respond to your question. It would be a lie if I said no it didn't hurt. After waking up is the worst until the spinal fluid levels are back. the pain isn't as bad but still hurts. Just make sure your son doesn't wait too long for pain medicine. I was known for waiting way to long to ask the nurse for something. But I didn't want to become addicted to the meds. And it is uncomfortable to sleep you wake up very stiff and in pain. But remind him that isn't forever it will pass. 
Janae Ferch
Decompressed 9/14/10. 18 yea old. The hardest and roughest thing ever to go through. Lightsand sound bothered me after I woke up from surgeryand lasted for the longest time. Maybe get a "neck" pillow. That's what helped me. Can't lay on the back of head for awhile andthose pillows have a cut out in the middle. Worked very well! Best luck to ur son and family.
FlyinHyy
I ached for you as "we" were driving to the hospital. hugs hope surgery three is the final one
KarenBear
I noticed a skydiving video associated with the raulandmichele thing. I was wondering if that was you skydiving if you developed your symptoms after that dive? I have ACM 1 as well and was wondering if you felt that skydiving had something to do with symptom onset?
Hilaryisweird
It really sucks after the surgery because not only are you in pain, you can' move your freakin neck. I know when I was recovering. it was really hard for me to communicate with my family because I couldn't turn my head or anything. I'm so happy to hear/see that you are doing well.
Martha Careful
I have syringomyelia still existing after having two surgeries on a Chiari Malformation. My surgeries were 8/06 and 9/06. I have had some "unknown difficulties" or that is what my surgeons have told me. I had severe skull base Osteomyelitis develop after the second surgery that was not found until 4/09. I had a skin revision on the site this month (1 week ago) due to too much scar tissue. Go figure!! So, after all of this, I still have the "syrinx" on my spinal cord.
Lynnanne
I chose to have the surgery years ago but I walked off the stretcher when they took me into the OR. Since then I had 2 children and they gave me general anesthesia with c-sections to be safe. Also had to have an mri in my 8th month of pregnancy to make sure the fluid in my spine was not getting messed up.........I salute those of you who have gone or are going through this surgery. I do know a 16 year old who didn't think it was too bad.
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