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        Cluster Headache Help and Support >> Cluster Headache Specific >> CH Surgery?????
        
(Message started by: lastchance77 on Jan 20^th, 2008, 4:09pm)

Title: CH Surgery?????
Post by lastchance77 on Jan 20^th, 2008, 4:09pm

I have been searching this website and only found one
person that i think has had surgery for there headaches
with all the money spent on drugs can surgery be a good way out of the daily pain?

Also does anyoe know what is the span for surgery and who will perform this?

thanks-David

Title: Re: CH Surgery?????
Post by Ray on Jan 20^th, 2008, 5:40pm

Just my personal opinion...

The statistics for success with surgical treatments for CH are dismal. I would consider surgery only as a last resort prior to suicide.

As to your other question re: "span" I don't understand the question.

Ray

Title: Re: CH Surgery?????
Post by Bob_Johnson on Jan 21^st, 2008, 9:22am

The abstracts I've seen on various surgical approaches have not been very encouraging re. outcomes. I believe this area is just too young to have much to offer.

Meds treatments have the longest track record and the most choices. I believe it would be best to exhaust your options before trying what would be a costly and unproven approach.

Have you explored these sources of info?

http://www.headachedrugs.com/pdf/ha2006.pdf Dr. Robbins site. Then explore the entire site by deleting everything following. com/ and then hit enter.
=========================================================================
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)

http://www.plainboard.com/ch/chtherapy.pdf

Title: Re: CH Surgery?????
Post by lastchance77 on Jan 21^st, 2008, 1:35pm

Ray, I was talking about the outcomes and how they turn out from the operations in the future (if it was worth it). thanks

Title: Re: CH Surgery?????
Post by lastchance77 on Jan 21^st, 2008, 6:22pm

on 01/21/08 at 17:42:27, JEG_43MD wrote:

I have reviewed more techniques for relieving headaches and surgey has generally been a bad decision. Especially any kind of Sympathectomy.

Here is a link for a doctor that could help:
http://drjho.com/novel_occipital_neuralgia_surgery.htm

Other than that, I remeber one guy who had the nerve cut that was causing his cluster migraine. After 3 months, the nerve re-connected and headaches resumed and were 10 times worse!! I don't want my headaches to be worse. I can't imagine that kind of pain...ao my input is NO SURGERY unless you have a identified structural abnormality or pathology going on that is causing headaches. If it is just Cluster headaches, surgery is not a good option.

Peace.

No, there is no way i could stand for them to get any worse!

I stopped at Walgreens and picked up a bottle of Melotonin and will see if this helps any.

and thinks for the doctor referal

Title: Re: CH Surgery?????
Post by Guiseppi on Jan 21^st, 2008, 7:22pm

Howdy, I've been off the board for a week and just saw your post. There was a speaker at Richcon that gave some stats on the different surgery attempts. The success rate was almost single digit and the side effects for some was death!!! :o A substantial "side effect!" ;;D

That being said, after 30 years of dancing with the beast, I've got my life back using a 2 pronged approach to treatment. (I specify treatment and not cure!!!)

1: a good preventative medication. That's a medication you take all the time if you're chronic, and when you're on cycle if you're episodic. The goal is to reduce the frequency and the intensity of the hits. I use lithium, other popular preventatives are verapamil and topomax, and some have combined lithium and verapamil. There are many to read about in the link Bob gave you.

2: a good abortive, a headache starts, now what? Your first line abortive should be oxygen, at a high flow rate using either a "non re breather" mask or a "cluster" mask. Nasal canulas and re breather masks are worthless. The key is getting ONLY PURE 02 into your lungs at the first sign of a hit. I cam abort in as little as 6 minutes using this technique. Other great abortives are imitrex injectables or nasal sprays, pills generally take too long to be effective.

If you haven't been to a doctor yet, try chugging energy drinks or strong coffee at the first sign of a hit, many can abort a hit that way.

Good luck to you, please exhaust all the methods on the board before you consider surgery. Lots of people here to help you! ;;D

Guiseppi

Title: Re: CH Surgery?????
Post by BarbaraD on Jan 22^nd, 2008, 7:53am

As one who HAS HAD surgery -- NO NO NO!!!! When I had the surgery - my neuro thought it was a last resort (we had tried everything on the market at the time and I was about dead!). I went to the BEST neuro surgeron in the country (Wayne Hurt in Houston) and he agreed that I had an 80/20 chance that the surgery would work.

I took the gamble - I lost! It did not work. The headaches did not get worse - they just came back (after a month of blessed relief). But they did come back.

About nine months later (of hell) Both my neuro and I heard of an experimental drug (being tried for CH) and tried it - and it worked for me (topamax). It's been my miracle drug ever since.

I'm doing well today (have high cycles where nothing works too good, but I get thru them), but I live with some side effects of the surgery - a paralyzed jaw, a messed up optic nerve and no feeling in the left side of my face.

I don't spend a lot of time on regrets (what good would that do?), but don't recommend surgery for anyone else. I know of only one person this has actually worked on and I haven't talked to her in several years.

Hugs BD

Title: Re: CH Surgery?????
Post by chewy on Jan 22^nd, 2008, 8:25am

Put surgery on your to do list right under dancing on Mars naked.

Title: Re: CH Surgery?????
Post by lastchance77 on Jan 22^nd, 2008, 11:09am

Thanks alot for the responses, if it is that dangerous with very little good to outcome from it I will stay away from it.

I tried the molotonin last night and didn't have much luck with it 5MG at bedtime still woke 2hrs later with the beast.

And i have tried the energy drink deal, it did abort the headache but when it wore off it was like a hangover twice as bad. I know I cant drink them all the time so i give up on drinking caffiene.

I am a smoker 1-2packs a day, and maybe I have reached the bottom and need to try harder to kick it.

The imiterx doesn't work (pills) and i have tried the nasal imiterx and it burns my nose. I am very skeptical now about taking the injectable because I dont want any heart conditions from smoking and the chemicals in the imiterx.

I just feel like it is about to kill me some days. that was the reason for asking about surgery. I am still waiting for an appointment with the Nuero so i can talk to him about o2.

At 30yrs old is this what i have to look forward to the rest of my life?? pain and scared to leave the house in fear of what is coming?

Thanks again you guys for giving me feedback andSUPPORT- David [smiley=huh.gif]

Title: Re: CH Surgery?????
Post by brewcrew on Jan 22^nd, 2008, 12:27pm

I can't believe you have been seriously considering surgery, yet you just got around to trying melatonin, which is one of the first-line defenses around here.

You've got some reading to do. Go to the left side of the screen and start clicking. "Medical info" and "Oxygen info" would be two good places to start.

Title: Re: CH Surgery?????
Post by BarbaraD on Jan 23^rd, 2008, 9:15am

You don't just try melatonin one night and give up on it -- it takes a while to get in your system. NOTHING works immediately!!!! Give it a couple of weeks and take it in 12-15mg doses.

O2 should be used at least at 15 liters flow rate with a non-rebreater mask for about 15 minutes.

Caffeine is a vaso constrictor (energy drinks are loaded with it as well as taurine).

Imitrex pills don't work on many people. The spray works better on most and the injections work best. There's also Cafergot (ergotomine) pills or suppositories (be sure they're the Cafergot PB supposotories or you'll be throwing up your guts).

NOTHING is instant!!! Sounds like you need a good prevent, but don't expect it to take effect immediately -- give it time. You've had the headaches for a while - they're not gonna be cured up overnight (or probably in the near future). And even if you get them under control, you're still gonna have break-thurs.

You've got to give the meds a chance and give them time to work.

Hugs BD