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        Cluster Headache Help and Support >> Cluster Headache Specific >> Gamma Knife or Deep Brain stimulation
        
(Message started by: sailpappy on Apr 18^th, 2007, 8:52pm)

Title: Gamma Knife or Deep Brain stimulation
Post by sailpappy on Apr 18^th, 2007, 8:52pm

:-/ Well I saw the head of Neurology today at the Augusta VA Hospital. We talked for quiet a while then he tells me that he has reviewed my records and that there just isn't anything except surgery left for me.
Gave me 2 options, the Gamma Knife, to which I promptly told him "Not in this life time" because of all the bad results I have heard and read about, and given the fact that nerve blocks never had any positive affect it seems another exercise in futility.
Next is the newest "Deep Brain Stimulation" which I have also read very mixed reviews concerning the outcome and effectiveness?
What’s a Cluster head to do???? I told him I would have to think about it, but he needs to see if the VA will even pay for such a new procedure, my guess is they won't.
Any feed back from the Family would be greatly appreciated! Pappy

Title: Re: Gamma Knife or Deep Brain stimulation
Post by ClusterChuck on Apr 18^th, 2007, 9:07pm

Myself, I could be talked into the deep brain stimulation ... But that is just me ... NEVER the gamma knife !!!

Good luck, whatever you decide, my friend!

Chuck

Title: Re: Gamma Knife or Deep Brain stimulation
Post by UN solved on Apr 18^th, 2007, 10:45pm

I hope you'll find out as much about it as you can about it ...and other options before making any decisions ... but ultimately, it's a person decision that only you can make. I do believe that in some cases of chronic clusters it does possibly warrant this surgery. But I would exhaust all other non-invasive options first !!

I spoke w/ Dr. Black from the Mayo clinic just awhile back and he said they had done the DBS surgery twice here in the US and both had failed. He also said they had a very strict criteria for patients to meet before they would even be considered.

Goodluck Pappy !

Unsolved

Title: ... or Occipital nerve stimulation ?
Post by cluster on Apr 19^th, 2007, 3:49am

Hello Sailpappy,

perhaps Occipital nerve stimulation is an option to be considered, please check the following links:

http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=pubmed&dopt=Abstract&list_uids=17398309

http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=pubmed&dopt=Abstract&list_uids=17362835

A "third opinion" is restricted content in the Lancet Neurol. 2007 Apr;6(4) issue, perhaps your doc has it or can get it together with the full text of the abstracts linked above: http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=pubmed&dopt=Abstract&list_uids=17362827

Sorry to read that all??? other options fail for you.

Take care and best wishes,
Friedrich

Title: Re: Gamma Knife or Deep Brain stimulation
Post by Bob_Johnson on Apr 19^th, 2007, 10:59am

Sorry I don't have more to offer.

Neurology. 2006 Jul 11;67(1):150-2. Related Articles, Links

Hypothalamic stimulation for intractable cluster headache: long-term experience.

Leone M, Franzini A, Broggi G, Bussone G.

Istituto Nazionale Neurologico Carlo Besta, Milano, Italy. leone@istituto-besta.it

The authors report long-term results of continuous hypothalamic stimulation in 16 chronic drug-refractory patients with cluster headache (CH). At a mean follow-up of 23 months, 13 patients are persistently pain-free or almost pain-free, and the other 3 are improved. There are no persistent side effects. Hypothalamic stimulation is an effective, safe, and well-tolerated alternative to surgery for chronic patients with drug-refractory CH.

Publication Types:
Clinical Trial
Comparative Study

PMID: 16832097 [PubMed - indexed for MEDLINE]

Title: Re: Gamma Knife or Deep Brain stimulation
Post by sailpappy on Apr 19^th, 2007, 1:05pm

:o ;;D ;;D Thanks everyone for the advise and research, all points I will bring up with the Doctor on the next visit, I doubt the VA will fund any of these procedures, but, with them under the gun the way they have been lately, anything could happen!
Mucho Thanks Pappy

Title: Re: Gamma Knife or Deep Brain stimulation
Post by UN solved on Apr 19^th, 2007, 4:15pm

I would think that before a doc recommended DBS to a patient ... he would want them to try an ONSI procedure first. It is much, much safer, easier, and less expensive.

Might be worth asking your doc about.

I was the first person in the US to have a bi-lateral ONSI in March of 04'. I had it done @ MHNI by Dr. Rogers. It didn't help me though. It felt like the electrical current just wasn't penetrating the skull. It was worth a try though. I had it done as an outpatient and was back home in no time. Had to wear a soft collar for a week. No side effects at all.

I'm just throwing out ideas .... [smiley=huh.gif]
UNsolved

Title: Re: Gamma Knife or Deep Brain stimulation
Post by pieface_49 on Apr 19^th, 2007, 9:43pm

Deep brain stimulation has had some effect.
2003-04: http://www.neurologyreviews.com/apr05/DBSClusterHeadache.html

Study is still in progress:
http://www.regence.com/trgmedpol/surgery/sur84.html

And, still more:
http://www.pslgroup.com/dg/25a456.htm

And probably most interesting to most :) :
http://www.jneurosci.org/cgi/content/abstract/26/13/3589

http://www.ingentaconnect.com/content/bsc/cha/2004/00000024/00000011/art00004

Donnie

Title: Re: Gamma Knife or Deep Brain stimulation
Post by UN solved on Apr 19^th, 2007, 11:45pm

on 04/19/07 at 21:43:35, pieface_49 wrote:

All of your links (except for one) involve Dr. Leone, Who has done this several times and claims decent success. I think most of these surgeries were done in Italy.

I had not heard about the doctor in California that had 'followed 4 patients'.

When I talked to Dr. Black, I thought he was the only doctor in the US trying it at the time. Again, his results were not promising. :-/

I believe that Dr. Black & Dr. Todd Rozen both know Dr. Leone. I heard that doctors from the Cleveland Clinic actually taught the Italians how to do this. ( Said it was still not approved to do in the US at that time ) . Could be BS though ... but I doubt it.

UNsolved

edited to add: thanks for providing the links

Title: Re: Gamma Knife or Deep Brain stimulation
Post by Kirk on Apr 20^th, 2007, 12:15am

John:
There were 8 people in a trial at the Mayo clinic in Scottsdale AZ, where they used the same method for CH as they did for epilepsy (sic) patients. Using some sort of eltro stimulation of the appropriate part of the brain. With a success of 7 out of 8. This was a few years ago. But your doc should be able to find the trials.
I wish I felt good enough right now to to do the research for ya. Maybe I just imagined it. I don't squat anymore.

[smiley=smokin.gif]

Title: Re: Gamma Knife or Deep Brain stimulation
Post by pieface_49 on Apr 20^th, 2007, 9:53pm

Hahaha, I came back to reply to UN Solved. Know I have read more and needed to address it. No one can deny some of the most recent innovations/possible solutions to CH. Scroll down to "Potential treatments".
http://www.mayoclinic.com/health/cluster-headache/DS00487/DSECTION=7

lPlease read fully:
http://www.nlm.nih.gov/medlineplus/news/fullstory_46330.html

On the side, this could be an option for some. http://www.mayoclinic.org/cluster-headaches/clintrials.htm

Title: Re: Gamma Knife or Deep Brain stimulation
Post by Kirk on Apr 21^st, 2007, 2:04am

Pieface:
http://www.mayoclinic.org/cluster-headaches/clintrials.htm doesn't get you to anything about CH. Using their search engine for all three clinics with "Cluster Headaches" gets you 0 results. Could you have the URL wrong?

[smiley=smokin.gif]

Title: Re: Gamma Knife or Deep Brain stimulation
Post by pieface_49 on Apr 22^nd, 2007, 2:29pm

Oops, sorry, missed the "l" in "html".
http://www.mayoclinic.org/cluster-headaches/clintrials.html

Title: Re: Gamma Knife or Deep Brain stimulation
Post by George_J on Apr 22^nd, 2007, 11:47pm

Pappy, you'll know best what's right for you. I know that you have, and will continue to consider all alternatives carefully.

My very best wishes and hopes to you. I have nothing but admiration for your strength and persistence in battling a beast for so very long that's far, far harsher than my own. You're a hero to many of us.

My hat's off to you.

George

Title: Deep Brain stimulation
Post by cluster on May 6^th, 2007, 6:24am

Here is a link with some information about DBS for CH in the Mayo Clinic:

All American Patriots: Small Study Suggests Promising Role for Deep Brain Stimulation Surgery to Treat Intractable Cluster Headache (http://www.allamericanpatriots.com/48722485_mayo_clinic_small_study_suggests_promising_role_deep_brain_stimulation_surgery_treat_intrac )

Here is a link to an article about CH and Bob:

Washington Post: When the law can be painful (http://washingtontimes.com/technology/20070504-103153-8610r.htm )

pf wishes
Friedrich

Title: Re: Gamma Knife or Deep Brain stimulation
Post by DannyV on May 9^th, 2007, 1:36am

Pappy Sir,
I am going through the same shit right now. I am just gathering and putting together all the info and testimonials that I can find about these surgeries. I am going to tell my doc I'm really not interested and want to keep trying other prevents. He is SOO sick of me. He says that I am as bad as it gets and I have no other option. I have not tried Mushrooms or LSD yet. I just dont know where to find it. I volunteered for the study that a Dr sewell is doing on it close to me. Im a little scared of that too. I cant go on much longer like this though. I dont know. ---Wow. That could not have been very helpful. Sorry.

Title: Re: Gamma Knife or Deep Brain stimulation
Post by Katherinecm on May 9^th, 2007, 1:59am

I've been struggling with something similar myself.

My main concern with surgeries are that while there is improvement in levels of pain, most of these people are still on heavy narcotics and toxic preventatives after surgery- often to the point that they still can't work for a living. While this arguably improves quality of life, I wonder how much of this is temporary- due to the trauma of the surgery. What if it returns in 5 years? When I add in the unknown long-term risks due to my age, it doesn't make sense for me right now.

My neuro suggested pain management for 5 years or as long as I can stand it until the surgeries are more advanced. She seemed to think that they have recently discovered so much that it won't be long for much more effective surgeries are available. I hope she's right.

Granted, pain management doesn't seem to actually touch the pain much. But it does drug me into an oblivion that makes it not matter so much anymore. At least then I can get some sleep. I do try to limit this to *only* when I need a psychological break and not for everyday. I am *terrified* of developing a tolerance to the point they wouldn't work anymore. Then what would I do?

Obviously all of this is individual. I wish you the best of luck in finding the right option for you.

Title: Re: Gamma Knife or Deep Brain stimulation
Post by DannyV on May 9^th, 2007, 2:36am

Katherine,
Looks like we are both up late tonight. Your posts are great to read. I'll bet you are a real fast typist.
Anyway,.. Yes. Be careful. I started with pain mgmnt. in 2000, and ,well, let's just say I don't think a horse tranquilizer could take me down these days. Tollerant indeed. Can't really blame my doc for wanting me to try surgery. He has given me a deadline actually.