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Topic: CH Free for 1 year after surgery (Read 1755 times) |
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David G
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I informed this message board of my surgery for CH over one year ago. I have been C free ever since. At the time I posted this information I was attacked by all of the anti-surgery experts. I sufferd CH for over 10 years first as acute and then chronic which for which I was treated with Maxalt. I had my surgery by Dr. Guyuron 440-461-7999 in Cleveland , Ohio. He is now in clinical trials. He has performed this surgery over 60 times as part of the trial. I should mention that most are migrain patients. You first have Botox injections to see if you are a candidate for surgery. Search Dr. Guyuron on the web for more info.
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| « Last Edit: Nov 20th, 2002, 9:13pm by DavidGoldberg » |
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Ueli
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Re: CH Free for 1 year after surgery
« Reply #1 on: Nov 20th, 2002, 9:51pm » |
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I searched using Google, AllTheWeb and Lycos for:
Guyuron AND (clusterheadache OR "cluster headache"
Number of hits: zero
Addendum:
On the website www.zeebasurgery.com, where belongs to the staff none of the words clusterheadache, clusterheadaches, cluster headache or cluster headaches is known.
On www.plasticsurgery.org all the specialities of Dr. Guyuron are listed, but this website too does not contain clusterheadache, clusterheadaches, cluster headache or cluster headaches.
 
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| « Last Edit: Nov 20th, 2002, 10:08pm by Ueli » |
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Ueli
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Re: CH Free for 1 year after surgery
« Reply #3 on: Nov 22nd, 2002, 10:44pm » |
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David, thank you for the links.
I learnt a few points from them.- Dr Guyuron is convinced his surgical approach can cure migraines
- Some of his peers, among them the famous headache specialist Dr Seymour Diamond, are not yet convinced
- Some skeptics, like Ueli, cannot accept as proof that Nurse D'Angelo was without migraines for two weeks after surgery
- Dr Guyuron postulates: "Maybe migraines begin with muscular triggers, which inflame nerve endings, which cause a release of chemicals and hormones within the brain." That would mean, the nerves that normally report touch, heat, pain, cold etc. would be grossly mis-wired at the other end, and their message triggers false chemical and hormone production
 Such an argumentation is worth of quacks like Ali and Dannyboy
So I stick with my opinion, as long as the surgery is not recommended by independent experts (like Seymour Diamond) only dedicated Guinea pigs should choose this way to treat their migraines.
But he most important point is, something almost everybody on this MB agrees on:
Chluster Headaches and Migraines are two different beasts
So, even if Dr Guyuron's treatment should turn out to be one of the best, there is no reason why clusterheads should go for it. And this is supported by the fact that up to now, neither Dr Guyuron nor anybody else (apart from David's testimonial) gives the slightest hint that this surgery could be indicated for CH too.
PFNADs
Ueli
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MikeS
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Re: CH Free for 1 year after surgery
« Reply #4 on: Nov 23rd, 2002, 4:44am » |
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Great Job!!!! Just ignore the comments from those that call you guinea pig or as long as Dr Seymor Diamond doesn't recommend it.
After my first 10 years (6 yrs chronic with 3-5 attacks daily each lasting three hours and always peaking 9-10 on kip). For those of us who have gotten that bad , surgery, addiction, and any other problems seem minor compared to 9-15 hours of pain each day with little resue techniques availible. Not being able to work at all and constantly being stranded on the floor or bouncing around runny nose, sweating at 32 degrees and all that embarrasing stuff.
I spent 4 weeks in-patient in Chicago with Dr Seymor Diamond. I respect him a great deal. After seeing me get my attacks each day along with the fact that I also suffer migraines, He said that if I could get 50% improvment that may be the best I could hope for . He explained that his patients who had Chronic CH along with migraines, treatment was extremly difficult. After my 4 week stay I went home and got about a 40% reduction in the number of attacksfor 3 months then only about 30% after that. At the hospital I would get methadone (dolifin) injections which helped a great deal. Of course after I left I was told that I only could use methadone during my hospital stay.
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manicmechanic
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MikeS
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Re: CH Free for 1 year after surgery
« Reply #5 on: Nov 23rd, 2002, 5:01am » |
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Great Job!!!! Just ignore the comments from those that call you guinea pig or as long as Dr Seymor Diamond doesn't recommend it.
After my first 10 years (6 yrs chronic with 3-5 attacks daily each lasting three hours and always peaking 9-10 on kip). For those of us who have gotten that bad , surgery, addiction, and any other problems seem minor compared to 9-15 hours of pain each day with little resue techniques availible. Not being able to work at all and constantly being stranded on the floor or bouncing around runny nose, sweating at 32 degrees and all that embarrasing stuff.
I spent 4 weeks in-patient in Chicago with Dr Seymor Diamond. I respect him a great deal. After seeing me get my attacks each day along with the fact that I also suffer migraines, He said that if I could get 50% improvment that may be the best I could hope for . He explained that his patients who had Chronic CH along with migraines, treatment was extremly difficult. After my 4 week stay I went home and got about a 40% reduction in the number of attacksfor 3 months then only about 30% after that. At the hospital I would get methadone (dolifin) injections which helped a great deal. Of course after I left I was told that I only could use methadone during my hospital stay.
My Neuro at home saw how well narcotics helped my clusters he suggested a pain clinic for possible surgery or methadone treatment. I went in for the surgery and got a CH attack on top of a migraine while being wheeled to the O.R. Because I couldn't keep still He wouldn't consider surgery that day. So he started treating me with daily methadone and I saw some improvment. He asked me to try for 6 months slowly titrating the dose along with fentynal suckers for breakthrough. After 6 months I was starting to work some. With a few combinations and a few years I can work 30-45 hours each week. Am I addicted ? I don't know I have no craving for the meds and often forget some doses each month. Since the dosage is right supply is never an issue. What I thought in the past might be "drug seeking" for me was really a natural desire for something that actually helped the pain. My Dr. calls it "pain relief seeking" sort of the same thing that makes us bang our heads orsuch things.
Thanks for your patience with my rambling. MikeL
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manicmechanic
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David G
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Re: CH Free for 1 year after surgery
« Reply #6 on: Nov 23rd, 2002, 8:53pm » |
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Mike L, I like your agresive approach. Try things until they work.
Have you tried Botox? Dr. Guyuron will only prerform the surgery if Botox stops the pain. My suggestion, give him a call.
David
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