Hi All,

2 years and several months out and they still have not been able to fix my
post craniotomy head pain/"headache" (which is localized to the incision site &
occasionally the front and/or top of my head). I have tried countless
medications, 30 shots in the scalp of Botox (which made the exacerbations
worse), 6 days in the hospital with IV medication as well as an Occipital nerve
block (which caused intense pain all over 5 minutes after): all working with one
of the country's top neurologist/headache specialists. They've suggested I may
have developed RSD or that I am simply going to have to the last resort of
surgery. After contacting an RSD Specialized Neurologist, they immediately
recommended a Neurosurgeon: Dr. Jeff Brown (an adult functional neurosurgeon in
NY)..I have agreed to go see him for a simple 411 appt, but; I already have a
neurosurgeon, more importantly; one who is pediatric (I'm only just turning 16)
and who has done every other surgery Ive ever had;
obviously if he can do the same thing I'll choose to get it done from him (Rick
Abbott, Children's Hospital @ Montefiore, NY)...
My question is this-I was wondering if any of you have any experience
regarding the following in regard to POST CRANIOTOMY PAIN; a neuroma, entrapped
nerve is within or under the
skull (I have 3 titanium clips holding my skull piece in place), neurolysis or
relocation of a neuroma, or an implanted peripheral nerve stimulator.

I'd greatly appreciate any replies; thanks a lot for reading...Keep on keeping
on & take care all.

Sincerely,
~Sara Stowell
16 y/o F, d/x 12/10/04. resection for Pilocytic Astrocytoma 4/18/05. 2nd
Operation for adjustment to "hardware" 6/30/05.



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