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cussy CH.com Newbie Offline I Love CH.com! Posts: 2	sugery Jun 29^th, 2010 at 3:08am has anyone considered surgery? my doc talked to me about it.don"t like the odds. anyone else care to comment?
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E-Double CH.com Alumnus Offline Are we ourselves? Posts: 6948 Commack,New_York Gender:	Re: sugery Reply #1 - Jun 29^th, 2010 at 3:32am Ive had these for yrs. Ive been chronic for 6 Not once has it crossed my mind
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Batch CH.com Alumnus Offline Control The Beast With O2 & D3 You Must Posts: 3708 Bremerton, WA Gender:	Re: sugery Reply #2 - Jun 29^th, 2010 at 5:40am Cussy, Has your doc prescribed oxygen therapy? If not, and he's talking surgery, I'd be looking for a new doc. Take care, V/R, Batch
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Guiseppi

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Re: sugery
Reply #3 - Jun 29^th, 2010 at 9:28am

The surgical option should definitely be your last try...when all else has failed. The success rate has been dismally low, the potential side effects are severe.

Check out the standard options first. For prevents, verapamil, lithium, topomax. For abortives, OXYGEN, Imitrex injectables or nasal spray, zomig. All readily available through your doc.

Should all of the above fail you, go to clusterbusters.com there you will find a number of alternative treatments worth trying.

You need to either educate your doc with material from this board, or find a doc who is willing to listen to you. This condition does not lend itself to sitting in front of a doc and saying fix me. Most doctors, specially GP's, will never see a CH in their career. The 15 minutes of headache training they received in med school just doesn't cover us! Wink

Joe

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"Somebody had to say it" is usually a piss poor excuse to be mean.

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George CH.com Moderator CH.com Alumnus Offline Black-Billed Magpie Posts: 8126 Boise, Idaho USA Gender:	Re: sugery Reply #4 - Jun 29^th, 2010 at 9:38am Is your doctor by chance a surgeon? When you have a hammer, every problem looks like a nail. Just saying. Best, George
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Bob Johnson

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Re: sugery
Reply #5 - Jun 29^th, 2010 at 9:40am

I'm with Joe all the way!

I follow the medical literature regularly on this question and the results are pretty consistent: very mixed outcomes; low rates of long term/consistent success; continuing efforts/need to refine the technical aspects of the various tecniques.

I would only consider this approach after all the conventional treatments (with their known track/safety records) have failed you.

Since we are looking for treatments which we may have to use for many years, any surgical approach will not only have to resolve the technical problems but then develop a track record of success--all takes time.

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Bob Johnson

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Lee_Ann

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Texas
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Re: sugery
Reply #6 - Jun 29^th, 2010 at 11:52am

My husband has had 3 surgeries. None of them worked. He's chronic.

The first was cervical fusion. He was convinced at the time that this would fix his headaches and probably would not have had it done if he had been convinced he had cluster headaches. A surgeon talked him into it.

The same surgeon severed both occipital nerves a year later.

This April he tried the Occipital Nerve Stimulator trial (ONS).

He has also tried all traditional medicine.

You can read about what he is trying now if you search my posts on this board or go to clusterbusters.com message board and read about it there.

Good luck.

Lee Ann

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George

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Re: sugery
Reply #7 - Jun 29^th, 2010 at 12:02pm

Here's the latest update I could find on Ryan Stockdale, a local man who is one of the few in the US who has received DBS surgery in order to treat intractable chronic CH.

He's had DBS twice--the first was removed due to an infection. The latest update on his second surgery is from March of this year. I'm not in contact with him, so I have nothing that is more recent. From what I'm reading, the results have been mixed. Perhaps he's doing better now, but I don't know.

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Best,

George

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"Whoever loveth me, loveth my hound." (Thomas More, author of "Utopia", and Chancellor of England. 1477-1535)

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seaworthy CH.com Hall of Famer Offline Posts: 706	Re: sugery Reply #8 - Jun 29^th, 2010 at 8:23pm 38 years of CH and surgery was has not nor will it ever be on my options list.
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Callico CH.com Hall of Famer Offline Author of "Stranded at Romson's Lodge Posts: 4916 Aurora IL Gender:	Re: sugery Reply #9 - Jun 30^th, 2010 at 2:16pm Absolutely the last resort. Once it is cut you can't uncut it if it doesn't work, and for most it doesn't. Jerry
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