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        Cluster Headache Help and Support >> Medications, Treatments, Therapies >> Your opinion re this surgery....?
        
(Message started by: EstieSA on Mar 31^st, 2008, 11:48am)

Title: Your opinion re this surgery....?
Post by EstieSA on Mar 31^st, 2008, 11:48am

Hi

The long wait is over. Drove the 200 miles today to see a new neuro(surgeon).

Nothing new except that I wasn't aware of the "surgeon" part ::)!

He is in agreement with the CH diagnosis , but thinks he can resolve it...

The procedure is called : Trigeminus scarring with balloon.

What is worrying is that he seems to do this procedure all the time, according to him! CH is NOT a dime a dozen , so for what else does he perform this procedure ?

Anyone familiar with this? Success rate, if any?

Title: Re: Your opinion re this surgery....?
Post by MJ on Mar 31^st, 2008, 12:52pm

Estie.

By no means am I a neurology expert. I have heard of this and researched it just a little in regards to a family member who had some nerve damage.

I may be wrong but as I understand the procedure it is an isolation of the nerve with the ability to restore at a later date.
Or in the case of a damaged nerve casing a way to isolate or encapsulate the nerve untill restoration regrowth happens.

It appears somewhat common in the elderly where disease or age has worn away the nerve casings.

From reading, some success has been had with trigeminal neuralgia hard and fast hits of short duration(ice pic headaches,) where trigeminal nerve damage has been found.

I think the doc is confusing the neurology with cluster headaches and also assuming the nerve is actually damaged.
With cluster the nerve activation is a response vs a cause in my opinion.

Thats all I know for whatever its worth.

Further reading;
http://www.egms.de/en/journals/cto/2005-4/cto000018.shtml

Title: Re: Your opinion re this surgery....?
Post by Bob_Johnson on Mar 31^st, 2008, 12:53pm

I've never heard of this one! If this has not appeared in our medical literature (U.S.)--even as a passing mention of a possibly new procedure--I should be highly cautious.

None of the surgeries offered for CH have a good track record for success and I would never consider any of them until ALL the drug therapies have been tried and failed.

Title: Re: Your opinion re this surgery....?
Post by Ray on Mar 31^st, 2008, 1:28pm

Scarring the trigeminal nerve sounds destructive, similar to the methods described in the OUCH newsletter (Thank you ~~Dennis~~ Gator).

At one time, I looked into these and spoke to a neurosurgeon. The odds of these procedures helping you are, at best 50:50. Losing sensation in the eye on the affected side means that you could scratch your cornea and not notice it, losing vision in that eye. You could lose sensation on the side of the face and your jaw could misalign due to this.

You could have phantom pains on that side, and the beast could switch sides.

After exhausting all, or virtually all, pharmacutical treatments for CH, I STILL WON'T go for a destructive neurosurgical procedure. I will only consider this prior to suicide. I'm not suicidal (Thank God), so that's my stand.

Please don't decide to go forward lightly, ask the doctor for documentation on success rates and follow up success rates. Also ask for a listing of negative side effects on this procedure and how many of these He/She has performed, and how many His/Her hospital has performed. Please share that information with us.

Your Milage May Vary (YMMV), however, know that I'd never advise a destructive procedure for CH.

With best wishes,

Ray

Edited to give credit where credit is due

Title: Re: Your opinion re this surgery....?
Post by DennisM1045 on Mar 31^st, 2008, 1:35pm

Hi Estie,

Listen to Bob and Ray and go into this with your eyes wide open.

Surgeons operate. It's how they solve problems. I suppose it's only natural for him to look for a surgical solution.

If I were you (which I'm not!) I'd find a Neurologist and talk to them about what is best for your treatment.

Ray, Mike (a.k.a. Gator) wrote that article. Not me. But thanks...

-Dennis-

Title: Re: Your opinion re this surgery....?
Post by EstieSA on Mar 31^st, 2008, 3:23pm

You have confirmed my suspicions.

I previously had 3 ops with no benefit & lots of side-effects >:(!

I'll look up GP to devise a plan to get rid of the opiods,etc currently used to provide relief.

I will also address my diet & cut out whatever triggers I am still consuming (Link to an updated list,please?)

Then hopefully onto Isoptin & magnesium. My last taper had no effect so I'm somewhat scared at this stage :( !

Title: Re: Your opinion re this surgery....?
Post by DennisM1045 on Mar 31^st, 2008, 7:27pm

I'm on Isoptin (Verapamil) and it is really helping. Tried the sustained release last year and it didn't work so well. This year I'm using the immediate release formulation with much better results.

In my experience triggers are a very individual thing. What is a trigger for one of us isn't for another.

-Dennis-

Title: Re: Your opinion re this surgery....?
Post by kevmd on Mar 31^st, 2008, 8:34pm

I wouldn't consider this surgery because too many people here have had CH that switched sides. So you could be left with paralysis on one side and pain on the other. Believe me, if I were chronic and could be guaranteed that th CH would not switch side, then I would CONSIDER doing it.

Title: Re: Your opinion re this surgery....?
Post by Karla on Mar 31^st, 2008, 9:12pm

I would run as far away from that neurosurgeon as possible. Find a neruologist that specializes in ha and has treated ch patients and is open to suggestions.

Title: Re: Your opinion re this surgery....?
Post by superhawk2300 on Apr 1^st, 2008, 1:00am

Please be careful. I've had many surgeries and my opinion is that anytime the body is cut into it should be as a last resort.

Title: Re: Your opinion re this surgery....?
Post by gore2424 on Apr 1^st, 2008, 8:17am

Hello I had the trigeminal nerve cut in May 2002 after being chronic since Nov 1999 and had tried many meds in many combos for over 6 years. I only got a little over 4 months relief and the clusters came back in full force plus the right side of my face is numb forever and twice got an eye infection so bad they had to stitch my eye lid shut to finnally heal. At that time the DR in the Mayo clinic in Rochester Minn. had done 7 with 4 no headaches in over 3 years & 1 like me & 1 helped for over 1 year and 1 it never helped at all. So do as much research as you can before doing anything that cannot be reversed. Terry
P.S. currently doing ok with the meds I am on now

Title: Re: Your opinion re this surgery....?
Post by Bob_Johnson on Apr 1^st, 2008, 9:32am

Much duplication in these two articles but they do reflect the current standards of care for the medical treatment of CH.

HERE ARE TWO MAJOR DOCUMENTS WITH RECOMMENDED TREATMENTS FOR CLUSTER HEADACHE, ONE FROM A U.S. PHYSICIAN, THE SECOND FROM EUROPE.
_________________________________________
http://www.plainboard.com/ch/chtherapy.pdf
Here is a link to read and print and take to your doctor. It describes preventive, transitional, abortive and surgical treatments for CH. Written by one of the better headache docs in the U.S. (2002. Rozen)
================
Treatment guidelines from Europe

------
A. May, M. Leone, J. Áfra, M. Linde, P. S. Sándor, S. Evers, P. J. Goadsby:
EFNS guidelines on the treatment of cluster headache and other
trigeminalautonomic cephalalgias.
European Journal of Neurology. 2006; 13: 1066–1077.

Download free full text:
http://www.efns.org/files/guideline_49.pdf
(Thanks to "cluster" for link.)