Sara,



I'm so sorry to hear about your problem with this. To answer your question,
I have heard several patients complain about discomfort at or near the
craniotomy incision. I, too, have discomfort there. At times worse than
others, but something I just have become accustomed to, unfortunately. I
believe (8 years out now) that it has gradually decreased over time,
however, even as I type this I can sense that tight and tense sensation over
the area of the incision.



What is RSD? I suppose I should know this, but it's not coming to me.



Not sure any of this is helpful... good luck with your neuro appt and please
let us know how things turn out.



Trisha







_____

From: BrainSurgery@yahoogroups.com [mailto:BrainSurgery@yahoogroups.com] On
Behalf Of Sara Stowell
Sent: Friday, August 17, 2007 8:29 AM
To: BrainSurgery@yahoogroups.com
Subject: [BrainSurgery@Yahoo] Post Craniotomy Pain



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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