?

Log in

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.
Post A Comment | 7 Comments | Share | Link






Savaaha d'Loren
User: stripedpony
Date: 2008-12-03 15:16 (UTC)
Subject: (no subject)
He said Im not a candidate for MVD since none of the scans show a blood vessel on the nerve. Said there were a couple of different kinds of TN and I had a rarer type that is of an unknown cause.

can ya point me to this TN support list? Id love to hear more opinions from a larger group.
Reply | Parent | Thread | Link



imafarmgirl
User: imafarmgirl
Date: 2008-12-04 13:07 (UTC)
Subject: (no subject)
We didn't even do all the scans before my MVD and a blood vessel was still found. I'd get a second opinion. My MVD did work for a year and a half. Many people show nothing on the scan and still have a compression.

Please if you have time join the TN e-mail support list. It's not very busy and you will get loads of information. When you reply to people it goes to them instead of the group unless you fix that which is irritating, but other than that it's a great list. Here is the info to join.

Send a message to:
LISTSERV@LISTSERV.UARK.EDU
and, in the text of your message (not
the subject line), write: SUBSCRIBE TN-L

Reply | Parent | Thread | Link



Savaaha d'Loren
User: stripedpony
Date: 2008-12-06 02:09 (UTC)
Subject: (no subject)
thanks Sarah I finally got that Email sent. I think at this point Im seriously considering a consult to get the Gamma.
Reply | Parent | Thread | Link



imafarmgirl
User: imafarmgirl
Date: 2008-12-06 02:32 (UTC)
Subject: (no subject)
Where do you live? Is there somewhere good you can go?
Reply | Parent | Thread | Link



Savaaha d'Loren
User: stripedpony
Date: 2008-12-06 06:36 (UTC)
Subject: (no subject)
Im in Mississippi.I can go to the university hospital in Jackson.
Reply | Parent | Thread | Link



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.

Reply | Parent | Thread | Link



browse
my journal
March 2011