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Topic: Surgery, 100% Stoped my CH (Read 2180 times) |
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David
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I suffered for 10 years from CH. I started having sever attacks several times a year and progressed to chronic CH every other days but too sever. I lived on Maxalt and oxygen. I had surgery in August to cut the corrugator muscle, some branches of the trigeminal nerve and had a deviated septum repaired. The surgery has 100% curred my CH. The surgery was done in Cleveland by Dr. Guyuron. He is one of the leading plastic surgeons in Cleveland Ohio.
I am writting this message because I have been curred and know the pain that others have suffered.
http://www.migraines.org/media/wbmd0900.htm
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don
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Re: Surgery, 100% Stoped my CH
« Reply #1 on: Feb 23rd, 2002, 12:28pm » |
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come back a year from now and tell me your still curedwith no ngative affects fromt he surgery
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Ueli
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... that you've got rid of your meegraines.
But sorry, I don't believe that you had CH. We know nothing about you but your name. You didn't give your email, your age or where you come from, and your gender we only can guess. But most important, we don't know anything about your headaches, other that you "had CH for 10 years". We really would like a description of the headaches you had, so we can judge for ourselves whether it was CH or not. And, BTW, there are lots of clusterheads around who didn't have an attack in the last half year, but they would not claim that they are 'cured'.
The link you gave deals entirely with migraines, the word cluster is not even mentioned. But you are talking to people who know:
CH and migraines have nothing in common except both are in the head
The surgery you recommend may help for migraines, but there is not the slightest indication that it is indicated for CH too.
Since I'm in a good mood today, I only say: IMHO, you have been misdiagnosed with CH.
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DavidGoldberg
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Re: Surgery, 100% Stoped my CH
« Reply #3 on: Feb 23rd, 2002, 2:04pm » |
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Hello Ueli,
first my e-mail address is dgoldberg@adelphia.net
I was treated by the Cleveland Clinic for my CH and trust me I know what I had. Your response is like others I have seen at this site. People would rather suffer then get help. People kept on telling me Maxalt didn't help. You don't believe that surgery got rid of my CH. Why don't you take the time to read the medical reports and studies. Why do you think I posted this message just to give people false hope?
Also there is not a medical report I have not read. Cluster's are very similar to Migrains in their cause. Maxal is not a perscribed treatment for CH but it worked for me. Also only 2 patients have been treated for CH by my surgon and we were both succesful. Most of his cases were migrain. He has had abot 95% success for either a total cure or major improvement.
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| « Last Edit: Feb 23rd, 2002, 2:12pm by DavidGoldberg » |
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nancyc
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Re: Surgery, 100% Stoped my CH
« Reply #4 on: Feb 23rd, 2002, 3:59pm » |
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I pray your surgery last for you too...but let me ask you something? why would you say there are people at this site that dont want to be cured? That they would rather suffer....I think that was a very harsh statement to say to people..some of us have spent over 20 years paying out the nose to Docs and having other surgeries to find the cure, only to face disappointment and pain again....so ofcourse we are skeptical...I hope you rethink your statement...because I think it was very ignorant on your part to say it...smiles,nancyc PS i have a guy emailing me right now telling me to have the same surgery I had 12 years ago which was not successful....and he says I just dont wanna get better...how pompous.
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Margi
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Re: Surgery, 100% Stoped my CH
« Reply #5 on: Feb 23rd, 2002, 4:33pm » |
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Hi David,
We ARE glad that you've found relief from your pain. This kind of surgery has been discussed here quite a bit, in fact (mostly on the old message board, however). The problem that I, personally, have is two-fold...
a) you are experiencing pain freedom now, and the surgery may very well have caused your headaches to go into remission. But...to me, the test of time will be the only deciding factor if the remission is permanent, right?
b) I am assuming you only had surgery on one side of your face, correct? So, what happens when your headaches switch sides, David? That's a very real possibility for cluster headache sufferers. My husband seems to alternate, cycle to cycle -- it will be on the left one cycle, then on the right in the next one. In fact, in this particularily vicious cycle, he has had individual attacks that have started on one side and migrated to the other. Cutting the nerves on one side, therefore, would only be a 50% cure at best.
I truly hope you're one of the lucky ones who has found permanent pain freedom. I'm just explaining some of the reasons for the hesitation most of us have in declaring this the magic bullet for which we all search endlessly.
Please do let us know, when you are due for your next cycle, if you feel you truly have been cured?
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DavidGoldberg
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Re: Surgery, 100% Stoped my CH
« Reply #6 on: Feb 23rd, 2002, 5:24pm » |
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This type of surgery is only 2 years old. You are given Botox if this stops the CH you are a candidate for surgery. It took me two series of injections to stop the CH. MY CH were only on one side. The surgery was on both sides. There is no question in my mind that this surgery is effective for migrains. They have done about 100 of these procedures already. He has only done a couple of CH patients and both were curred. I am only saying I suffered from CH for two years and am now in total remission. People should take notice.
Dr. Guyuron, probably one of the finest plastic surgons in Cleveland is now opening a clinic just for this procedure. I suggest calling his office and talking to his research assitant.
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Ueli
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that in your first post you suffered for ten years from CH, in your last post only for two, and in your fist post you were cured whereas in the last one you are in total remission (what is the meaning of total in this context?). Ahem....
The credentials of Dr. Guyuron as a plastic surgeon are of no concern here; if a clusterhead wants his Horner's syndrome fixed: any old plastic surgeon can do that. However, I did a web search on Dr. Guyuron, and from what I found I do agree with you that his surgery is effective for migraines. But this is of no concern here neither, because
CH and migraines are two different diseases.
Neither on the link you gave nor on any of the sites about Dr. Guyuron's method did I find any reference to cluster headaches. So this doctor does not pretend that he can help clusterheads, quite in contrary to our resident high pressure salesman from South Africa who presented a 'cured' clusterhead, but alas, this turned out to be a case of TMJ helped by a bite plate.
To all contemplating surgery:
Please have a close looks at BobG's http://www.clusterheadaches.com/wwwboard/messages2/133926.html on the good old message board, and at the links and followups.
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| « Last Edit: Feb 23rd, 2002, 8:33pm by Ueli » |
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MarcJ
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Re: Surgery, 100% Stoped my CH
« Reply #8 on: Feb 23rd, 2002, 9:23pm » |
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Interesting set of links to others' stories. The more I read about surgery, the more it really scares me. I wish we all had the magic bullet to kill these things, however surgery just doesn't sound like the thing for me. I'd rather live with not being able to find a knowledgable doctor, fight with ignorant insurance companies, not to mention the h/a themselves and the disruption caused. The 'shrooms sound interesting, however I work in an industry that drug tests you when they hire you and then after every slip and fall at work. Can't afford that these days as I do like getting a paycheck.
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DavidGoldberg
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Re: Surgery, 100% Stoped my CH
« Reply #9 on: Feb 23rd, 2002, 9:47pm » |
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First I said I suffered from CH for 10 years but that this type of surgery has only been around for 2 years.
I don't see the big difference of being in remission or being curred. I went from a CH almost every 2 days like clock work to not having any for the last few months. After the surgery I was told I may have a few for 2-3 months, which iI did, but they were very mild. I also suffered from tension headaches for several months which were also expected. The surgery was not simple since I had to have several procedures and my scalp was numb for several months, also as expected. I needed about a week to recover from the operation.
Migraine headaches are related to CH. They are both vascular. Guyuron believes that CH is due to triger points. In my case there was intervention at 7 locations.
Of course this surgery is experimental and only a couple of CH patients have been treated.
Most of the articles on the internet are just press reports. You need to read Plastic and Reconstructive Surgery, August 2000, Vol. 106, No.2
My own experience is that most Drs. know very little about CH or their treatment. You need to be agresive to find what works. This is such a terrible disease I feel an obligation to let others know what has worked for me, and hopefully them. The vast majority of CH patients do not get any treatment and most don't even know what they have. Oxygen, Maxalt, and this surgery worked for me. I am only trying to open peoples eyes to a possible effective treatment. I tried Maxalt when it first came out. It was only supposed to be for migraines and people on this web site kept on telling me it didn't work for them. That may be and possible the surgery will also not work for them but my guess both are effective treatments.
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bdenkew
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Re: Surgery, 100% Stoped my CH
« Reply #10 on: Feb 23rd, 2002, 10:33pm » |
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David,
It's great you found a cure. You mentioned tension headaches and numbness for awhile. Are you having any side effects or other problems that you feel are a result of the surgery?
Thanks,
bdenkew
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Charlie
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Re: Surgery, 100% Stoped my CH
« Reply #11 on: Feb 24th, 2002, 12:13am » |
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I'm very glad whatever headaches you had are gone. Surgery is very iffy for cluster headaches. If this has worked for you, you are just about unique. While none of us want to see your pain return, you have to consider the effect something like surgery has on our system. Our system goes into overdrive. Surgery is a shock. This may be why so many people give credit to surgery until the next attack. I hope it's gone but our experience is otherwise. Custers are a different animal.
Charlie
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DavidGoldberg
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Re: Surgery, 100% Stoped my CH
« Reply #12 on: Feb 24th, 2002, 10:15am » |
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Reply to bdenkew,
I have had no other side effects to the operation. I was told by Dr. Guyuron before the surgery that I would have a few CH after the operation, which I did over the first 3 months. I had about 6, but they were very mild. I also had tension headaches during this time but they were no big deal and responded to Tylenol etc. Your scalp is numb for several months but slowly goes away. The Dr. told me it could last up to one year. Dr. Guyron had to give me several injections of Botox to locate my triger points. My surgery was more agresive than most other patients. He also discovered that I had a deviated septum which he repaired.
I know surgery scares most people but you need to know that Dr. Guyuron is world class and one of the finest, if not the best plastic surgon, in Cleveland which is one of the top medical communities in the world. I never would have gone to an average surgon. He is being swamped by inquires but I still suggest that you call his office and ask for Janine 440-461-7999. He has just set up a seperate clinic just for this procedure.
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DavidGoldberg
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Re: Surgery, 100% Stoped my CH
« Reply #13 on: Feb 24th, 2002, 10:21am » |
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Reply to Charlie,
I think some of the confusion to my posting is that the type of surgery I had is different than what use to be done. In the old days surgery was only done in the most difficult cases and a branch of the trigeminal nerve was cut which caused a loss of feeling in parts of the head. There is no permenant loss of feeling with this operation.
David
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DavidGoldberg
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Re: Surgery, 100% Stoped my CH
« Reply #14 on: Feb 24th, 2002, 5:10pm » |
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Hi Ted,
When I first started to use Maxalt for my CH, and had great success, I posted this information on this web site and got lots of responses that it didn't work for them. By now I guess people realize it works. Now I took the chance and had experimental surgery for CH, which was only being promoted for migraines and again it worked. I have not had a CH for several months. Perhaps a coincident but I don't think so. I don't even know how to respond to your comment that I am a "salesman" but I know what it is like to suffer from CH and will excuse your bad maners.
I can't find in my e-mails were I said in one e-mail that I had CH for 2 years. Perhaps it was a typo but the facts are I suffered for 10 years. They started as acute CH that lasted for 2 week cycles about every 2-3 months. They were sever and I lived on oxygen before I discoverd prednisalone and Maxal. The CH then became chronic and occured every other day. Not as sever as when they first started and could be stopped cold with Maxalt.
I am not sure what your questions are about what the procedure is now and what was before. There are many branches of the trigeminal nerve. I had two branches on the sides of the head cut under the hair line. I also had a deviated septum repaired, which a branch of this nerve was affected by, and also had the coragator muscle cut which has a branch of the trigeminal nerve passing through. I have had no loss of feeling, can breath easier, and loss some wrinkels in my forehead. I should mention the operation is done on an out-patient basis. If I had not had to have a deviated septum repaired it was very minor surgery.
All surgery is with risk and I am sure a lot a bad things can happen. Perhaps I was lucky. The surgery is expensive, not without some discomfort and of course with risk. Every person that has it done must make their own decision. I just want other CH patients to know I took the chance and so far so good. It does not seem that you are looking for the positives but only the negatives. I believe in taking control of my own health. Even though I was under care of a Headache Department at the Cleveland Clinic I didn't even tell them I was going to have the operation because it was so new and I guessed they would not recomend it. After the operation I told them about it and my doctor said "Great". I posted Dr Guyuron's phone number on a previous message. Why don't you call his assistant and have her send you the medical journal articles. They will not do the operation unless the Botox works. I had no benifit the first month. Only when he invected the Botox in a wider area did the CH stop.
Good luck,
David
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Margi
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Re: Surgery, 100% Stoped my CH
« Reply #15 on: Feb 24th, 2002, 6:07pm » |
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nice post Ted. and nice whatever-you-call-it. I call it a logo. But it's nice, either way. So's your signoff.
Peace be to all souls.
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DavidGoldberg
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Re: Surgery, 100% Stoped my CH
« Reply #16 on: Feb 24th, 2002, 7:15pm » |
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Ted, I give up on you.
Have a nice day.
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KingOfPain
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Re: Surgery, 100% Stoped my CH
« Reply #17 on: Feb 24th, 2002, 7:31pm » |
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 I can't stand it, gotta put my 2 cents worth in here. I will quote you throughout my post David.
>>Let me say that I hope this surgery works for you, I do not wish pain on anyone. We as CHers have heard,seen,lived,& suffered through so many claims & treatments that it makes us all leary of any "cure" claim or statement. I don't mean (as I hope the others feel this way) any thing personal by questioning your statements/comments so don't take it that way. We just like validation & truth as we hope for any thing that will take our beast away. We can't take or deal with false hope.<<
David G.,* 1st & foremost there is no known definite cause or cure for clusterheadaches, period.
You said "Cluster's are very similar to Migrains in their cause".
*2nd,you said " After the surgery I was told I may have a few for 2-3 months, which I did, but they were very mild". How good of a "cure" could this surgery be if CH's continued?
*3rd, you said " People would rather suffer then get help". You are being met with much sceptisism with a comment like that. A true clusterheadache sufferer would never think or say a thing like that. We have been guinea pigs (hope I spelled that right) for the medical profession for so many years that really has no clue how to treat every CH person as nothing works for everyone (meds,treatments,etc...). I would rather break an arm or leg than go through another CH attack.
*4th, you said " I don't see the big difference of being in remission or being curred". The difference is being in remission does not mean you are cured. If you don't believe us CHers, ask a cancer sufferer the difference.
Like don said, come back a year from now & tell us you are cured. Or maybe in two years, or five...we will see. For your sake, I hope it works.
Finally, if I have spoken out of turn or if any of my statements are incorrect I am always open to constructive critisism & not above being corrected.
Again David G., I mean nothing personal in my post. KOP.
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BobG
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« Reply #18 on: Feb 24th, 2002, 10:33pm » |
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Everybody knows how I feel on the subject of surgery so I won't go there.
Actually I'm just trying to run up my numbers so it'll look like I'm contributing here. This is a Me Me Me post.
Mr Goldburg said "Your scalp is numb for several months but slowly goes away."
My ??? is- if the scalp is numb there is no feeling there, right? If there is nothing there how does it go away?
Won't it be better to say "Your scalp is numb for several months but slowly goes RETURNS."
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DavidGoldberg
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Re: Surgery, 100% Stoped my CH
« Reply #19 on: Feb 25th, 2002, 8:50pm » |
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Dear KingOfPain,
I suffered from CH for 10 years. The first two were beyond belief untill I discovers oxygen, later prednisalone, then Maxalt. I could then deal with CH as a nusiance and not have to run arond my house in pain, so I have "been there and done that". I took the chance and had this experimental surgery and now have gone into total remission for several months. When can I call it a cure, after 1 year, 2years, 3 years? It's only semantics. In the last few years I became a chronic CH suffer and had attacks every other day, so to go for 3 months seems like a cure to me. So of course they can come back but right now I am pretty happy.
So I decide to go on this message board and share my information. Instead of getting thoughtful questions I am attacted as being a shill for my doctor, I guess some people think I want to drum up business for him. The reaction I got from my posting are really bizar. The only reason I contine to respond to some of the rational questions is because I want people to hear what I say and then draw their own conclusion.
In response to some of your points.
1 First you say"1st & foremost there is no known definite cause or cure for clusterheadaches, period"
ans. I answer "so what, I agree, lot's of theories, but their are lot's of medication that are very effective and at age 65 + or - they usually go away for some unknown reason.
2. 2nd,you said " After the surgery I was told I may have a few for 2-3 months, which I did, but they were very mild". How good of a "cure" could this surgery be if CH's continued?
ans. I was told by my surgon that the CH would continue for some time at a reduced frequency and intesity. I had maybe 10 over a 3 month period but very mild. For the last 2 months none.
3.3rd, you said " People would rather suffer then get help". You are being met with much sceptisism with a comment like that. A true clusterheadache sufferer would never think or say a thing like that. We have been guinea pigs (hope I spelled that right) for the medical profession for so many years that really has no clue how to treat every CH person as nothing works for everyone (meds,treatments,etc...). I would rather break an arm or leg than go through another CH attack.
ans. My comment was because people whould rather attack me than ask questions. I find this strange. I spent my time reading every medical report I could get my hands on, tried every medicine, even if not approved for CH. Many of the posting I read here are very sad and I want to scream GET HELP!!!
4.4th, you said " I don't see the big difference of being in remission or being curred". The difference is being in remission does not mean you are cured. If you don't believe us CHers, ask a cancer sufferer the difference.
ans. I responed to this statement previously. Your spliting hairs with words. I believe there have been only a few CH patients that have had my type of surgery. All responded favorably. The surgery for migraine patients does not relieve migrain headaches. By March of 2000 31 of 39 patients were either improved or had their migraines eliminate. I like the odds. Even if the operation reduces the severity or frequency great. Because I can not say everyone that has had the surgery is free of CH for the rest of their live or your standared of curred mean that I should not tell everyone about it and let them make their own judgement. Would I be better off saying nothing?
I only keep responding to these messages beacuse I have "been there". I don't need to prove anything. Anyone with an open mind should just listen. Read the medical journals, talk to Dr. Guyuron's assistant. Don't spend all of your time just attacking me.
David
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DavidGoldberg
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Re: Surgery, 100% Stoped my CH
« Reply #20 on: Feb 25th, 2002, 8:58pm » |
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Reply to Bob G.,
I am not sure I understand your question. The surgery is done with endoscope which irritates the nerves under the scalp. This causes a numb feeling in the front part of the scalp which slowly goes away. After 5 months I only have a little numbness in the forehead. I was told before the operation this would be the case. Dr. Guyuron said this could last 1 year. This is the same side effect you would get with a cosmetic forehead lift. It is not a big deal.
David
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KingOfPain
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Re: Surgery, 100% Stoped my CH
« Reply #21 on: Feb 26th, 2002, 11:58pm » |
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Re: David G., I did not attack you or infer you were drumming up business for a Dr. of any kind. I did ask questions that I believe were very straight forward, thoughtful, & not at all bizarre. I guess you managed to overlook or misunderstand the beginning comments/ statements of my first post where I explained why I was asking the questions & that I meant nothing personal. Oh well, I tried. Hope everything works out for you. Keep us all updated on your progress.
KOP
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dannyboy
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Re: Surgery, 100% Stoped my CH
« Reply #22 on: Feb 27th, 2002, 2:05am » |
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Hi David,
You are certainly not unique in your surgerical cure - its just the S word gets people jumping because some of the surgeries for clusters have a pretty high morbidity.
The most interesting part of your post for me is the musclular surgery.
Thanks for the post in the name of science
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Ueli
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Just a quote that counts more for me
« Reply #23 on: Feb 27th, 2002, 8:43am » |
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than the babble of a medical layman:
On the web site of the Swiss Headache Society you can read:
For migraines and tension headaches surgical intervention should be avoided by all means, as long as there is no verification of its effectiveness (independent of the performing surgeon). For cluster headaches surgery could be indicated only in the rarest of special cases, refractory to any other treatment.
Where are the independent recommendations for the procedures Drs Shevel and Guyron? And who are the experts (if any) sharing their opinion that what's good for migraines is also good for clusters?
Just something to think about, folks.
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susan
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Re: Surgery, 100% Stoped my CH
« Reply #24 on: Feb 28th, 2002, 12:43am » |
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DavidG: I don't think anyone here wants to "attack" you. We're sincerely glad that you have found relief, however long or short lived it is....that being said, we're a deperate bunch that have also read journals, internet sites, watched the discovery health channel and listened to each other, we've been to umteen doctor's, who've given us umteen diagnoses (including, it's just stress...lie down and take an aspirin), so our nerves, and emotions are rubbed raw...so for you to pop up on the scene and with a sudden "Cure" or even a "Remission" what else can we do but step back and say "whaaaaat the......." So don't take it personally, we're just skeptical and weary of all the snake oils, and "oh it's just a headache, geeze...." You've been through it. Cut us some slack, and let us absorb the whole thing, we need time to research, just like you needed time to research. Thanks for listening. Good luck Brother, I hope you remain Pain free. Susan
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