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Post-Chiari decompression headache
My daughter had Chiari decompression surgery on August 3.  According to the surgeon, everything went well.  My daughter was Chiari headache-free for almost 4 weeks.  Just after her first post-surgical appointment, she started having a different kind of headache.  She felt like the top of her head would explode.  It would resolve a bit when she laid down, but came back full force when she got up.  Things progressed, I called the surgeon's office and was told "don't call us back unless she runs a fever".  I called the pediatrician who ordered an MRI.  I finally got the surgeon's office to listen after contacting the head of the new chiari center, and they told me to bring her in.  The surgeon said that everything looked good surgically and asked "what happened...you were a rock star after surgery!"  She then proceeded to send us to a neurologist for "pain management".  My 14 year old now has dilated pupils, a constant headache that is not relieved by anything, sometimes dizziness, sometimes nausea, and sometimes feels like she's losing her balance.  She also has a tremor in her right hand and her legs that comes and goes, and would be happy if she could sleep 16-18 hours a day.  She is exhausted all the time.  The neurologist sent us for blood work to try to find the cause of a tremor (thyroid & copper) which came back normal  and is sending her for a sleep study to determine if she has sleep apnea, narcolepsy, or surgery-induced hypersomnia.  HELP!!
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620923 tn?1452919248

  Hi and welcome to the Chiari forum.

I am so sorry ur DD is having these issues post op.....it is not uncommon, but we never seem ready for these issues to arise....

Post op it is possible to develop a related condition called POTS, I mention that bcuz she was checked and u said it was more of an issue when she stood up...if it were a leak, they should have found it....

Was she checked for ehlers-danlos prior to surgery? I ask, bcuz I wonder about cervio cranial instability as well....

What all was done during her surgery, lamenectomy, duraplasty?

If a dura plasty what type of patch was used....there r all sorts of issues that can crop up post op....

  Hang in there ((hugs)) to u both
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