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Percutaneous Glycerol Rhizotomy?? - mairondil

Savaaha d'Loren posting in mairondil
User: tn_support (posted by stripedpony)
Date: 2008-12-03 01:10
Subject: Percutaneous Glycerol Rhizotomy??
Security: Public
has anyone had any experience with this? The neuro consult today went in that direction instead of the Gamma knife... I really am not sure about this. I don't exactly like the thought if some of that glycerol ends up in my brain stem. And while the doc said he had performed over 100 with out complications he admitted its been so long since he did one that he didn't even know if he could get the right needles or the right glycerol.
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User: litlefawn3
Date: 2009-01-13 17:37 (UTC)
Subject: OTHER OPTIONS ARE AVAILABLE
HI MY NAME IS CTAHY AND IM NEW TO THE SITE, HOWEVER, I'VE HAD A RARE CASE OF TN ALSO...I WAS SIX WHEN I HAD MY FIRST ATTACK. I WENT IN AND OUT OF REMISSION WITHOUT A DIAGNOSIS. THAT CAME AT A LATER TIME (MUCH LATER).

IM NOT A CADIDATE FOR THE CRAINIOTOMY EITHER. I DID HAVE GAMMA KNIFE THOUGH. I WAS PAIN FREE FOR A MONTH AND WHEN THE PAIN RETURNED IT DID WITH A VENGENCE. BUT HERE IS WHY. I WOULD HAVE DONE ANYTHING @ THE TIME BECAUSE MY PAIN WAS CONSTANT! AGAINST THE NEURO'S ADVICE I INSISTED THAT I HAVE THE GAMMA KNIFE NOT ONCE BUT THREE TIME ALREADY. I ACTED ON EMOTIONS AND RAW PAIN! I DIDN'T THINK ABOUT THE AFTER EFFECTS, BECAUSE I KNEW NOTHING COULD EVER COME CLOSE TO THIS TYPE OF PAIN I SO DESPERATELY WANTED TO END!
ANYWAY, LOOKING BACK I WISH I WOULD OF LISTENED. BECAUSE OF THAT DECISSION IM TOLD I CANNOT HAVE THE MVD. THREE OTHER NEURALGIANS WERE THERE WITH ME AND OUT OF THE THRE TWO WOMEN AND A MAN, BOTH OF THEM TO DATE HAVE NO MORE PAIN. I WAS THE ONE THE GKRS COULD NOT EVEN TAKE THE EDGE OFF THE PAIN.
IM CONTINUING TO INVESTIGATE THIS FURTHER, I FEEL MORE CAN BE DONE,AND SHOULD BE DONE.

REMEMBER, WE ARE AL DIFFERENT AND RESPOND DIFFERENTLY TO PROCEDURES.ALL HAVE ADVANTAGES AND DISADVANTAGES TOO! I WISH MY VERY BEST FOR YOU AS YOU AND YOUR DR'S HELP DECIDE THE BEST TREATMENT PLAN FOR YOU.

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