Click this link to read a post I like on the clusterheadaches.com message board...

Oct 15^th, 2024 at 8:21pm

	Welcome, Guest. Please Login or Register
	Search box updated Dec 3, 2011... Search ch.com with Google!

New CH.com Forum › Cluster Headache Help and Support › Medications, Treatments, Therapies › Sphenopalatine Ganglion Ablation

(Moderators: Mrs Deej, DJ)

‹ Previous Topic | Next Topic ›

Pages: 1

Sphenopalatine Ganglion Ablation (Read 1037 times)

Clusterbluster

CH.com Newbie

Offline

I Love CH.com!

Posts: 7
Pittbsburgh
Gender: male

Sphenopalatine Ganglion Ablation
Mar 31^st, 2009 at 11:40pm

Or in other words: deep brain stimulation via radiofrequency.

I spoke with a friend of mine (who happens to be the head neurologist for an NFL team and internationally respected) and he suggested--as a last resort--this procedure. Though he is not my neuro (in fact, because I am still trying to obtain medical insurance to grab some O2, I have no neuro, or GP for that matter), I thought that it may be of interest to some of us.

I've neither heard of the procedure nor have any real idea what the possible benefits/costs of the procedure are. I was hoping to bring the idea to the group and perhaps someone has heard of it or has undergone it (or, presumably if you've done it, both). If neither, then perhaps it may be something worth looking into.

Here is the closest thing I have found that puts the procedure in layman's terms:

Multimedia File Viewing and Clickable Links are available for Registered Members only!! You need to

After three weeks of hell, I've been PF (save some shadows and close calls; thanks redbull Cheesy

!) for six days. Though I'm extremely blessed, I am still keeping an eye out for effective treatments and, of course, the beast.

Thanks guys,
Patrick

IP Logged

ClusterChuck

CH.com Alumnus

Offline

The BEAST rises again,
and again, and again,
and .

Posts: 5394
Greenville, North Carolina
Gender: male

Re: Sphenopalatine Ganglion Ablation
Reply #1 - Apr 1^st, 2009 at 1:15am

The DBS procedure may be a route to go, but after MANY other routes have been taken, first. The DBS procedure has not had the best of results, yet. It may be good, in the future, but not yet. There have even been a couple deaths, due to the procedure. It is very dangerous and extremely invasive!

I don't think anyone, who is episodic should take the chance or pay the exorbitant cost.

As far as surgical procedures go, the ONS (Occipital Nerve Stimulation) procedure is MUCH less invasive! It only goes just under the skin for the placement of the probes (instead of deep in the brain), leads, and generator (controller, brains of the unit). Even the ONS procedure is very costly, and still in its infancy for cluster headache applications.

But, remember, ANY surgical procedure is invasive and carries a certain amount of risk. Extreme investigation, and thought, is required before electing to go the surgical route for ANYTHING!

On another matter:

Can you get your friend, the neurologist, to write a prescription for you to get oxygen? For many of us, it is a life saver! Even if you have to pay for the oxygen out of pocket, it is very inexpensive, and worth its weight in gold, for how well it works, and how safe it is. Let us know if you have any questions about how to use the oxygen.

I am SO glad to hear that the red bull is giving you some pain free time! We always love to hear when one of us finds something that works well for them! WOOHOO!

Chuck

CAUTION: Do NOT smoke when using or around oxygen. Oxygen can permeate your clothing or bedding. Wait, before lighting cigarette or flame.

Keep fire extinguisher available, and charged.

IP Logged

nani

CH.com Alumnus

Offline

Clusterbusters

Posts: 8356
Los Lunas NM USA
Gender: female

Re: Sphenopalatine Ganglion Ablation
Reply #2 - Apr 1^st, 2009 at 8:04pm

I have Sphenopalatine Ganglion (Sluders) neuralgia (which is pretty painful on it's own) in addition to clusters. I can tell you that when the neuralgia flares up, my clusters switch sides (to the same side as the neuralgia) and it triggers the CH. Those have been some of my worst cycles.

The ablation will focus on the Sphenopalatine Ganglion, which may help CH if it's a trigger ... I doubt it would work strictly for clusters. It may help a bit, but I wouldn't try it, given that I don't think it would help enough. In my case anyway.
pf wishes, nani

Here I sit between my brother the mountain and my sister the sea. We three are one in loneliness, and the love that binds us together is deep and strong and strange.~Kahlil Gibran

IP Logged

Pages: 1

‹ Previous Topic | Next Topic ›

« Home

‹ Board

Top of this page

©1998-2013 Web Vision Enterprises LLC All rights reserved. All information on this site is protected by international
copyright laws. You may not re-distribute any information from this site without written permission from
Web Vision Enterprises LLC and the webmaster of this site. Violators will be prosecuted.
You may view our privacy policy and financial disclosure statement here

DISCLAIMER: All information contained on this web site is for informational purposes only. It is in no way intended to be used as a replacement for professional medical treatment. clusterheadaches.com makes no claims as to the scientific/clinical validity of the information on this site OR to that of the information linked to from this site. All information taken from the internet should be discussed with a medical professional!