--- In BrainSurgery@yahoogroups.com, Sara Stowell <sstowell4240@...>
wrote:
>
> 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.
>
>
Dear Sara,

I too had 2 brain (shunt) surgeries 22 years ago in 1985. My doctor
(neurologist) considers me to be one of the "lucky" ones (and I
suppose I am) for being able to return to what most consider a normal
life within a very short span (7 weeks); I was back to work and
living on my own again.

BUT!

The truth be told things were far from what most experience and I was
to still have through several phases till I was back to a point of
not wondering when it would all reach a point of normalcy.
Circumstances being what they were there were few I could honestly
share my problems with without causing more concern than I thought
necessary. (Let me further add my doctor often lets me know (I still
see him if only every 5 months or so) that he would have had me on a
much shorter leach had he known then what he knows now. It has taken
the internet and the experiences of others for meto fully appreciate
what he means.)

My surgeries were one of 2 critical medical experiences (not counting
having my tonsils out) in my life. The other was going on one of
those "once in a lifetime" diet in which I lost 60 lbs over 6 months
or so (5 years prior to having the seizure that led to the discovery
of my cyst...). Lessons learn from my dieting experience provided the
basis for my ability to recover and shake off those "side effects"
that continue long after the sugergies not the least of which is a
headache which continues to this day. From time to time in mentioning
it to the neurologist he has started to suggest this medication or
that, but the truth is I get by with the lessons learned from the
dieting experience.

Fruits and vegetables (anti oxidents) have played as importantant a
role for me as anything else. May I suggest you eat (munch) a plate
of fresh vegetables (celery sticks, carrot sticks, tomatoes,
cauliflower buds, cumcumber, peppers, etc) before dinner or as a
substiitue to a salad by adding a little dip on the side. Have more
fruit - at least 4-5 servings a day. Juice (4 oz of juice constute a
serving of fruit), a banana, strawberries (in season), grapefruits,
etc. And start taking, if you do not already, a vitamin E (1000 IE)
pill at least every other day.

Do not go into this with the expectation to lose weight as much as
with the expectation to feel better.

Something else that can make a headache worse (if that is part of
your problem) is, believe or nor, if you use a thick roll on
(underarm) deoderant. It can block off a critical spot the your body
uses to absob oxygen.

These are just suggestions. You night want to talk to your doctor, or
if you have access, to a nutritionist. My personal feeling is that
the doctors who preform and care for others who have had brain
surgery have absolutely no idea of what can affect a better recovery.
Much is taken for granted believing that you, the patient, know this
that or the other.

I wish you luck and hope all turns out for the best.

Bill

For me the