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Title: Surgery, 100% Stoped my CH Post by David on Feb 23rd, 2002, 12:18pm 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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Title: Re: Surgery, 100% Stoped my CH Post by don on Feb 23rd, 2002, 12:28pm come back a year from now and tell me your still curedwith no ngative affects fromt he surgery |
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Title: Congratulations.... Post by Ueli on Feb 23rd, 2002, 1:33pm ... 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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Title: Re: Surgery, 100% Stoped my CH Post by DavidGoldberg on Feb 23rd, 2002, 2:04pm 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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Title: Re: Surgery, 100% Stoped my CH Post by nancyc on Feb 23rd, 2002, 3:59pm 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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Title: Re: Surgery, 100% Stoped my CH Post by Margi on Feb 23rd, 2002, 4:33pm 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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Title: Re: Surgery, 100% Stoped my CH Post by DavidGoldberg on Feb 23rd, 2002, 5:24pm 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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Title: I did take notice, Post by Ueli on Feb 23rd, 2002, 8:18pm 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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Title: Re: Surgery, 100% Stoped my CH Post by MarcJ on Feb 23rd, 2002, 9:23pm 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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Title: Re: Surgery, 100% Stoped my CH Post by DavidGoldberg on Feb 23rd, 2002, 9:47pm 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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Title: Re: Surgery, 100% Stoped my CH Post by bdenkew on Feb 23rd, 2002, 10:33pm 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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Title: Re: Surgery, 100% Stoped my CH Post by Charlie on Feb 24th, 2002, 12:13am 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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Title: Re: Surgery, 100% Stoped my CH Post by DavidGoldberg on Feb 24th, 2002, 10:15am 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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Title: Re: Surgery, 100% Stoped my CH Post by DavidGoldberg on Feb 24th, 2002, 10:21am 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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Title: Re: Surgery, 100% Stoped my CH Post by DavidGoldberg on Feb 24th, 2002, 5:10pm 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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Title: Re: Surgery, 100% Stoped my CH Post by Margi on Feb 24th, 2002, 6:07pm 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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Title: Re: Surgery, 100% Stoped my CH Post by DavidGoldberg on Feb 24th, 2002, 7:15pm Ted, I give up on you. Have a nice day. |
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Title: Re: Surgery, 100% Stoped my CH Post by KingOfPain on Feb 24th, 2002, 7:31pm :o 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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Title: ???? Post by BobG on Feb 24th, 2002, 10:33pm 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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Title: Re: Surgery, 100% Stoped my CH Post by DavidGoldberg on Feb 25th, 2002, 8:50pm 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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Title: Re: Surgery, 100% Stoped my CH Post by DavidGoldberg on Feb 25th, 2002, 8:58pm 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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Title: Re: Surgery, 100% Stoped my CH Post by KingOfPain on Feb 26th, 2002, 11:58pm 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. http://D:\downloads#2/_SMILE~1.JPG |
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Title: Re: Surgery, 100% Stoped my CH Post by dannyboy on Feb 27th, 2002, 2:05am 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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Title: Just a quote that counts more for me Post by Ueli on Feb 27th, 2002, 8:43am than the babble of a medical layman: On the web site of the Swiss Headache Society (http://www.headache.ch/htm/medizin/therapie/chirurgie.htm) 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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Title: Re: Surgery, 100% Stoped my CH Post by susan on Feb 28th, 2002, 12:43am 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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Title: Re: Surgery, 100% Stoped my CH Post by Jodi on Feb 28th, 2002, 7:22pm THATS F------ WONDERFUL ONLY TWO PATIENTS YOUR SURGEON HAS DEALT WITH THATS A WINNER |
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Title: Re: Surgery, 100% Stoped my CH Post by DavidGoldberg on Feb 28th, 2002, 9:42pm Reply to Danny Boy, Cutting the Corrugator Suercilii Muscle is the main procedure. I had my deviated septum repaired and the branches of the trigeminal cut as an extra. Cuuting this muscle is the point I should have stressed more. David |
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Title: Re: Surgery, 100% Stoped my CH Post by DavidGoldberg on Feb 28th, 2002, 9:52pm Reply to Susan and Jodi, I know you are both skeptical and that is fine. I just could not live with my self for not sharing this information. I will leave you with one thought. The surgery is not done unless Botox puts the CH in remission for a couple of months. It takes 30 days or so to become effect and lasts for another 3-4 months. Botox is widly used for migrain patients. Why don't you try that and see what happens. Also I don't want to promote Dr Guyuron too much because people thin I am already puffing but Dr. Guyuron is a world class plastic surgon, the most well known in Cleveland. |
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Title: Re: Surgery, 100% Stoped my CH Post by DavidGoldberg on Feb 28th, 2002, 10:05pm Reply to Ueli, I have refered to the main article in the journal of Plasti and Reconstructive Surgery by Drs Guyuron and Michelow. This article has also been reviewd by Dr. D. Hal Unwin on April 25,2000, Dr David M. Knize on May 9, 2000. May I suggest that you read all three articles and get the facts. There have also been many articles published as news reports but these medical articles, although a bit complicated, are very convincing. I agree only few CH patients have been treated. I am just glad I was one of them. David |
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Title: Re: Surgery, 100% Stoped my CH Post by dannyboy on Mar 1st, 2002, 5:06am Hey David, Thanks for the reply. Three more questions that I have... What function does the Corrugator Suercilii perform? Where was the suture line for that particular part of the op? and where were the other suture lines? many thanks for sharing the info, hoping you'll remain pain free Daniel |
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Title: Re: Surgery, 100% Stoped my CH Post by DavidGoldberg on Mar 1st, 2002, 9:54pm Hi Daniel, The Corrugator Suercilii doesn't do much. When people have a forehead lift these are the muscle cut. What you do is loose the wrinkels in your forehead. My wife is jelaous. It is harder to frown, but that is about it. They cut the muscles using an endescope throuch the eye lids. The incesion was so small you could barely see it. The stiches disolved. The other incesion were on the side of the head in the hair. This was also done with an endoscope. Two holes were made on both sides of the head but I belive only one branch of the trigeminal nerve was cut. There is no loss of feeling, just some numbness in the forehead which is slowly disapating. This could take a year. No big deal . Please read the following article. David http://www.migraines.org/about_media/wbmd0900.htm |
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Title: I'm still not convinced Post by Ueli on Mar 3rd, 2002, 8:39pm I'm still not convinced, and here are my reasons: David stresses over and over again that Dr. Guyuron is one of the foremost plastic surgeons. But for me that is of no importance. The specialist for CH is a neurologist. Even if they are top notch in their field, I'll get no help for CH from a plastic surgeon, nor a specialist in oncology or heart diseases, nor a gynaecologist nor a proctologist (maybe the later we could use since Dannyboy is such a PITA :(). Sure, the discovery came from plastic surgery that smoothing of the wrinkles on the forehead, either by surgically stretching the skin or by Botox injections, can have a beneficial effect on migraines. But the statement migraine headaches and CH are both vascular in nature can only come from someone not current on the latest theories as presented by Peter Goadsby, Arne May et al. The vascular component is only a short common stretch in the dynamic of CH and migraine. And because of this the Triptans and ergot compounds are helpful for both, but on the other hand oxygen acting on the vascular component for CH is almost useless for migraines. The big difference is: CH starts with a (wrong) signal from the hypothalamus, whereas migraine starts in the brain stem. For both, the vascular component (that causes the pain) is only secondary, and therefore both diseases are in modern terminology no longer called "vascular headaches" but "neuro-vascular headaches". I have no doubt on the claim that Dr. Guyuron has helped many migraine sufferers, and that he deserves all the positive reviews he received. But I very much doubt (and I would like to see a confirmation of an independent expert) that a very tiny branch of the trigeminal nerve that runs through the corrugator supercilii muscle can exert the devastating effect on the trunk trigeminal nerve we experience. And how and why can this small branch trigger an attack that goes from zero to full blast in less than 5 minutes? Why did David get a relieve (of at least for half a year) from this sort of surgery? First, it could be pure coincidence. I sure hope that my chronic CH will break one day, and I probably will correlate that with any event that happened at the same time. Second, could it be that David never suffered from classic CH? After all, he mentioned here (http://www.clusterheadaches.com/wwwboard/messages/9745.html) and here (http://www.clusterheadaches.com/wwwboard/messages/11292.html) and here (http://www.clusterheadaches.com/wwwboard/messages/11333.html) that his 'clusters' had a tendency towards migraines. David also had a deviated septum corrected. We don't know how severe this was, but when I had a look at my MRI scan, the only thing that struck me was a rather wavy septum, but the doctor said "oh, that's nothing special, almost everybody got it". An extremely deviated septum might impair breathing, but in my believe: calling it a cause of CH is a plain and simple a money maker. What I am very curious about: why did David undergo this very experimental surgery, after all he had so much success with Maxalt that in 1999 he recommended it in more than 20 post, plugging it so often the one could almost believe got $5 for every pill sold :(. He even went as far as calling everybody an idiot (http://www.clusterheadaches.com/wwwboard/messages/9461.html) that was satisfied with the 5 minutes relieve from a Imitrex shot or oxygen and didn't want to try the 15 minutes relieve from Maxalt. In conclusion: I can not recommend to anybody a surgery that showed some success in a doubtful case and that was tried a few times more (without reports on outcome). My opinion is still: PFDAN, Ueli |
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Title: Second, could it be Re: Surgery, 100% Stoped my CH Post by David on Mar 3rd, 2002, 9:59pm Hi Ueli, Although Dr. Guyuron is a Plastic Surgeon he has just opened a headache clinic with two nurologists. So if you think they know all of the answers give them a call. You state that perhaps I did not suffer from CH's. I was treated for 7 years by the Cleveland Clinic Headache Department. I had every classic symptom of the disease. You are so convienced that sugery did not work for me that you now think that perhaps I did not even have CH's. I don't know your symptoms but I will match the acctacks I had with anyone when the first started for me. It would be like telling you that your headaches are your imagination, which I would never do, because it is so hurtfull to one that has suffered from them. You also state that that it could be a coincidence that my CH have stopped on their own. That is of course possible. I am 58 and during the early 60's they often stop. Also I believe that CH are closer to migraines than you think. I can match you expert for expert. Although my CH were of less intensity during my chronic stage, I still got a pain in my temple that gave me a 5 minute warning and they still manifested their greatest intensity behind my left eye. They were still a 5 on the kip scale and had all of the symptoms of my earlier CH. Also you took offense because I promote Maxalt. I took Imitrix shots and pills ( even before they were available in the US, I went to Mexico to get it.) I belive Maxalt MLT is much better, at least for me, and wanted to be sure others hear about it. As you know Maxaly is only indicated for migraines, not CH. Imitrex did not work for me. Even though Maxalt made my life managable I wanted to get off all medications due to their potential for long term damage. This is especially for true for prednisone. That is one of the reasons I had surgery. I have always kept my mind open to new treatments. My internest told me oxygen would't work. I tried it any ways. He was wrong. I have been very proactive in my treatment of my CH's. I am not saying what worked for me will work for others, I just want to share my results. You should be a little more open. Is it possible that you are wrong? David |
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Title: Some Unemotional Comments Post by Cranpain on Mar 4th, 2002, 7:53am First, my neuro is a published headache expert, recognized by his peers. When I asked about surgery, he frowned and said, "It is not successful, and leaves many side effects. Don't do it!" I hate to go against that advice. Secondly, I hope your headaches never come back, but listen carefully. Four year ago I had heart surgery, having two angioplasties (balloons) and a stent installed. At the completion of these procedures, my CH's went away for several months. I told my wife one day that I thought I was done with CH's. But they returned. I don't know why the break in the cycle after surgery, but I was "clean" for a long time. Before any of you have surgery, at least consult more than one doc. It is a serious move. Good luck, David. Thank you for trying to help us. |
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Title: Re: Surgery, 100% Stoped my CH Post by David on Mar 4th, 2002, 5:10pm Reply to Crainpain, I never asked my nurologist at the Cleveland Clinic for his opinion about surgery. I assumed he would not advise that I have it. Itold him after the operation and his opinion was he had not heard that it helped anyone. My guess is that the sugery that he was thinking about, as well as your Doctors recomendation, was based on a more radical procedure. You should also know that I would never have had the procedure by just an average surgeon. Dr. Guyuron is world class and had done this procedure I guess 100's of times. David |
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Title: Re: Surgery, 100% Stoped my CH Post by Ted on Mar 5th, 2002, 12:12am If he is such a good doctor you might mention his name once or twice. Oh that's right. You mention his name in every post with the moniker of "world-class surgeon." Just taking a wild guess here but you're his fucking shill on a percentage of it, aren't you? he's a fucking plastic surgeon doing basic surgery (albeit, a wrinkless type from what you say, but still basic for a plastic surgeon) and yet only the divine Dr Goobies is the world-class type. For what it's worth, I had my deviated septum operated in '81. My CHs started, coincidently enough, 3 years, 4 months and 17 days later. Oddly enough, the car accident I was in was 4 years, 17 months and 3 days before my first attack. Not only that but my brother is about to be a father and he was thinking of naming his kid 17-years-three-months-four-days. We might call him Joe for short. Although his Christian name... well, being Jewish he won't have one. Anyway, what I was saying was you make as much sense as this. |
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Title: Re: Surgery, 100% Stoped my CH Post by dannyboy on Mar 5th, 2002, 2:32am I agree with Ueli on that one - We see the most horrific results of irresponsible surgery here too - its definately to be treated with maximum caution. However, two things 1) To say SURGERY should never be used, is like saying DRUGS should never be used. Some surgeries like gamma knife, brain shunts etc have high morbidity - other surgeries have almost zero morbidity making them infinitely less harmful then the medications you constantly ingest. 2) Neurologists have got as much business treating headaches as dentists have got treating prostates. The current neuorological literature on headache is about as accurate as their success rates indicate. I've never heard of a neuorlogist curing a headache, ever, they just give you drugs. And once you get into the literature you see that there are many different opinions on exactly how the drugs work - "Oh this one didn't work, so sorry, lets try another one....." and so it goes adinfinitum. Infact - That neorologists seem to OWN the malady called headache is the very reason that they can cure niether tension headaches nor migraines - they know almost nothing about either. Small surprise they've had so much success with clusters. Neuro-vascular eh Ueli? ... thats the latest is it? ... and which vascular would that be - intra or extra cranial my knowlegdeable friend? Ask your neurologist ... he'll give you the wrong answer, and another cocktail to keep away the pain God bless 'im. |
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Title: Re: Surgery, 100% Stoped my CH Post by Ted on Mar 5th, 2002, 3:11am I can now spit out the lava, thanks to Danny's complete ignorance coming up quickly. "1) To say SURGERY should never be used, is like saying DRUGS should never be used. " No. Drugs like Imitrex, Verapamil, Lithium, have been roven to work. Surgery has only proven to get quacks' children to keep coming back here and prove nothing. 2) Some surgeries like gamma knife, brain shunts etc have high morbidity - other surgeries have almost zero morbidity making them infinitely less harmful then the medications you constantly ingest. And all the surgeries, morbidity rate or not, have no known benefit for a CHer. I guess if I was to get surgery it would be one with less of a morbidity rate. I was thinking of having my left pinky extended a centimeter, as that would be a safer surgery but ALSO have nothing to do with my CHs. 2) Neurologists have got as much business treating headaches as dentists have got treating prostates... It being neurovascular, well, in your case you may be right. 3) The current neuorological literature on headache is about as accurate as their success rates indicate. I've never heard of a neuorlogist curing a headache, ever, they just give you drugs. Me neither. As there is no cure, I have never seen anyone cure it. I have seen some huxters claim to have cured it. But look who I'm talking to. The "man" who came to this board claiming to have a cure for us and all we had to do was pay your daddy lots of money for worthless surgery that to this day is still not published in any credible medical journal. Why is that, by the way? We've seen your con-man ass here for years now and you still can't produce an article from a legitimate article for us. 4)Infact - That neorologists seem to OWN the malady called headache is the very reason that they can cure niether tension headaches nor migraines - they know almost nothing about either. Psst. We have Clusters. 5) Neuro-vascular eh Ueli? ... thats the latest is it? ... and which vascular would that be - intra or extra cranial my knowlegdeable friend? that's been the latest for years. Why claim a "cure" and not even know this much? Intracranial. Obviously our CHs aren't extracranial. they really are within our heads and not without them. Or, are you suggesting that not only will surgery work but they are the result of some outside force? Get fucking real, danny. The lava is spit at you. Oh, for your next victim? the vascular system is intracranial too. |
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Title: Re: Surgery, 100% Stoped my CH Post by dannyboy on Mar 5th, 2002, 5:00am Intra-cranial means inside the cranium (skull) - i.e. your brain et al - intra cranial is what neuro's deal with. The following arteries et al, are outside the brain but inside the head, making them Extra-Cranial... Extranal Carotid Internal Maxillary Temporal Occipital Middle meningeal (SP?) etc Just an aside, if they do brain surgery, they only have to anesthetise your skalp and your skull, once thats done they can cut into your brain matter and you wont feel a thing. Nope ... not a thing ... I could stab you in the brain and you wouldn't feel it! Suprising? ... not if you're me. The guy who does your 'cluster resources' quotes Ekbom from time to time. Ekbom also studies the involvement of extra-cranial arteries in clusters - I sent his article to boob and he said he'd publish it in the OUCH library, not sure if he did ... I'll send it to you instead of the NALI... peace? |
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Title: Re: Surgery, 100% Stoped my CH Post by DJ on Mar 5th, 2002, 6:34am ..... what about those of us who now have arteries that are both extra cranial AND inter cranial? ;) Anyone curious as to if I've had any cycles since my surgery for a completely un-related condition? I normally wouldn't jump into a thread like this, but with all the neurovascular talk, I couldn't resist! LOL |
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Title: Re: Surgery, 100% Stoped my CH Post by tenfiftypi on Mar 5th, 2002, 9:07am Hi, I'm new to this, so please bear with me. My cluster headaches began about twenty years ago (when I turned 29). I kept thinking they were sinus related. I had the nasal scope, MRI, CATScan, even thought about having my teeth pulled. The pain is always over my right eye; it goes down my neck, all of my teeth on my right side (top and bottom) ache; and the pain goes down into my shoulder. I have tried everything from diets to accu-pressure; meds included Stadhal (forgive the spelling) to Imitrex (which I currently use in the nasal spray form). The regiment now is Imitrex spray, hot tub to relax and ice pack for my right temple. This cluster period has lasted 3 months now. Two nights ago, I had another attack. Unfortunately, I ran out of Imitrex. I did everything else, though. I tried to relax (but we all know how hard that is). My legs straighten out stiff, my feet move uncontrollably, and I can't seem to relax. My wife started to massage my feet and legs; I started to use "deep breathing" exercises. Within 10 minutes (according to my wife), I did start to relax and the pain started to subside. Now that I have a chance to look back, when I first started getting these things, I would panic. I would ask myself, "how long is this going to last", "when will the next one start". This just intensified the pain and duration. I started getting one about thirty minutes ago. I still don't have any Imitrex. But I laid down, crossed my arms over my chest, and practiced the deep breathing. It must be a quiet place so that you can "concentrate". While inhaling, think about the top of your head, and while exhaling (slowly), think about the feeling of relaxation starting at the top of your head. Continue this until the pain stops. Concentrating on the pain only increases it. I know I must sound like an idiot. Even while writing this, I can't believe it worked. But as I said, I've tried everything, even Oxygen Therapy. So there might be something to this. When you are trying to relax and breathe deeply, you are getting more oxygen to the brain and the blood vessels. PLEASE, I would appreciate your comments if you have tried this. Or is it just a placebo and I'm just fooling myself. Thanks |
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Title: DJ.................. Post by Cranpain on Mar 5th, 2002, 11:29am What about your cycles? Of course we're interested. Did they stop temporarily? Still stopped? Resume immediately? We've had all kinds of experiences with surgery and CH posted here. Looking for yours! |
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Title: Re: Surgery, 100% Stoped my CH Post by Ueli on Mar 5th, 2002, 5:08pm Motto: "Don't wrestle a pig, you get dirty and the pig enjoys it" But despite better knowledge, I try to teach a pig to sing. An attempt to clear up the Dannyboy's muddle Dannyboy has proven once more that his knowledge in medical matters is not even sufficient to be an assistant in a butcher's shop. Being a Manager of Business Development he feels fit to throw around Latin words, even if he completely misinterprets them. As anybody, but Dannyboy, knows the cranium is that bony shell of our head, just below the scalp, also known as the skull. Therefore, intra cranial means inside this bony shell. But on this inside is not only the brain, bot lots of other stuff, by example the bulk of the trigeminal nerve and the main arteries feeding the head. There is not such a thing as an extra cranial artery, except some very minor extensions that feed the muscles that wrinkle the skin (those some scam artists want to cut to 'cure' CH) and feed the scalp (and the very tiny muscles that raise our hair when we read the absurdisms that Danny utters). Look at this picture from the OUCH site (http://www.clusterheadaches.org/library/general/trigeminal_pic.htm) and you see the intra cranial site where the main artery and the trigeminal nerve come close together. When the artery starts to expand the pressure on the trigeminal nerve closes the feedback loop of the pain causing circuit. This is the one and only point common to both CH and migraine. And since the Triptans act here to constrict the arteries, they are helpful for both diseases. However, and that's the cardinal point, the signal that starts the whole chain reaction comes from the hypothalamus in the case of a cluster attack, and from the brain stem for a migraine. People with a bit more reading skill than Danny can start about the neuro-vascular nature of these two headaches with this article (http://www.clusterheadaches.org/library/general/trigeminal.htm) from the OUCH library. An example for the dim witted like Dannyboy: Assume one guy is travelling by car from Chicago to Miami, and an other guy from New York to Houston. Necessarily, the two routes will cross at one point, they may even use the same road for a few miles. But calling the two itineraries similar to each other, just because of the one crossing point, is as absurd as trying to construe a lots of similarities between cluster headaches and migraines just because of this one common spot (that happens to be the one that responds to Triptans). About 'cures': There are curable diseases: As an example, today, chances are good to recover from pneumonia, and those that do are afterwards as good as new. But a foot bitten off by a shark can not be cured. The best one can hope for is a prosthesis (for Danny: a wooden leg) that comes as close as possible in functionality to the lost foot. The same for diabetes: The body's loss of producing its own Insulin can not be cured, but with an external supply the effects of this disease can be greatly relieved. And all we can hope for CH is to suppress its devastating effects. Looking for a 'cure' is as vain as the alchemists century long quest to make gold; but of course, quacks and scam artist claim to have found the solution. Dannyboy writes Neurologists have got as much business treating headaches as dentists have got treating prostates. The current neuorological literature on headache is about as accurate as their success rates indicate. Well, I don't know if, when Danny's car develops an engine hiccup, he calls at the carpenter's. But I know for certain: It's a sure-fire sign of a scam artist when we hear: "we the [insert name here] know the solution, the medical profession has not the hint of a clue." One more time, Dannyboy, stop messing up this board with your half asses medical knowledge, the health column of any weekly magazine does score better than you. For your continuous attempts to confuse the people seeking help on this board you will fry in hell for eternity.This board is for clusterheads and their supporters, but your continuos disinfestation is not helpful at all and only causes harm.You have nothing lost on this board, so fuck off ! And please, stop calling me 'your friend' |
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Title: Re: Surgery, 100% Stoped my CH Post by Flex on Mar 5th, 2002, 5:58pm ;D ;D ;D ;D ;D ;D ;D ;D ;D ;D ;D ;D ;D ;D ;D |
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Title: Re: Surgery, 100% Stoped my CH Post by chjohn on Mar 5th, 2002, 6:51pm How would you know if you were cured anyway? Episodes can come 10 years or more apart. Besides treating the symptoms, not the cause is no cure for anything. John |
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Title: DJ............. Post by GlendaB on Mar 5th, 2002, 7:51pm I would be very interested in knowing how your cycles are now since your surgery. :) |
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Title: Re: Surgery, 100% Stoped my CH Post by Ted on Mar 6th, 2002, 9:35am on 03/05/02 at 05:00:16, dannyboy wrote:
No shit. Point being? on 03/05/02 at 05:00:16, dannyboy wrote:
Shit no. Point being |
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Title: Re: Surgery, 100% Stoped my CH Post by Jodi on Mar 6th, 2002, 6:44pm :DFlex , Bravo this is entertainment |
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Title: Re: Surgery, 100% Stoped my CH Post by bandhsdad on Mar 6th, 2002, 10:31pm Personally, I thought I was going to read something thought provoking, but instead it's a bunch of people pointing fingers and acting like kids! If the guy says it worked, so be it! If you don't believe him, keep your comments to yourself! It sure appears that the guy has done his homework. You can go round and round all you wish, but none of you appears to be budging, so when will someone come out the winner, huh?? |
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Title: Re: Surgery, 100% Stoped my CH Post by Ted on Mar 6th, 2002, 11:49pm on 03/06/02 at 22:34:52, bandhsdad wrote:
You're new aren't you? first of all, nothing worked for Danny because he's not a clusterhead. His father owns a headache clinic and he's been apointed the local pusher. Check out the archives of the old board to find out more about him and his "knowledge." If you're talking about David, well, you're new, aren't you? Many people come here and sell surgery to us and we DEMAND logical proof of it having a potential to work before we just allow bullshit statements to come here which very well may cause harm if the desperate try it. Because when we are desperate we WILL try anything if someone says it works, regardless of if it will make things worse for us. We won't know that if it's not questioned. So, instead of criticizing those of us who question huxters, maybe you can try out every new "cure" that comes to the board and tell us objectively which ones helped and which ones crippled your face and made the pain last longer? |
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Title: Re: Surgery, 100% Stoped my CH Post by Ueli on Mar 7th, 2002, 8:46am bandhsdad, bandhsdad, please be careful, you sure sound like someone that is prone to fall victim to snake oil vendors. :-[ on 03/06/02 at 22:31:55, bandhsdad wrote:
Who is this guy, the infallible pope? When I hear of a claim for a 'cure', I ask: Does it sound plausible, Do the foundations stand on solid feet, How is it supposed to work, Is it in accordance to current knowledge, How often has it been used and at what success rate, Is the performer a recognized specialist, What have peers to say about it ?? ... David's claims failed about every of these questions. That this procedure has been done hundreds of times (but for migraines), by a top notch plastic surgeon, simply does not impress me as long as I don't get satisfactory answers to the questions above. As for Dannyboy, a description of him could serve any dictionary for the definition of "scam artist". on 03/06/02 at 22:31:55, bandhsdad wrote:
Oh bandhsdad, it seems that something you haven't grasped yet is, that this board is about to help people with clusterheadaches. But that does include that any claim is critically assessed and any scam is debunked mercilessly. To 'believe or not believe' I leave to religious questions; here sound reasoning and proofs are asked for. If you call this "acting like kids" - be it so (but I see no reason to repeat it 5 times). |
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Title: Re: Surgery, 100% Stoped my CH Post by Jodi on Mar 8th, 2002, 9:01pm David, I could almost cry at what you can say.First let me tell you that the anlyl reason I am alive is because of my 6 year old son. When i am at my worst i have to watch hime sleep just to keep from killing myself.( sorry about the spelling not feeling well). I remember the first time my parents saw me with CH they thought i was dying-or the first time my old man saw me get one i had collapsed in the shower not only with pain but THE FUCKING FEAR that they were back. The fear of going to sleep coming home or waking up FEAR!!!!! I have tried everything and have become addicted to some meds back and forth. I have been my neuros little freak side show experiment and you want me to beleive the word of a doctor who has curred only 2 patients and has had only two CH patients. Tell me when he has curred 100 of them for at least 5 years. My son lost his father exactlly 1 year ago March 1st Surgery is not an option my son lost one parent he will not loose another to plastic surgery Jodi |
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Title: Re: Surgery, 100% Stoped my CH Post by lcpipeman on Mar 9th, 2002, 3:09pm Hi David, thanks for you post. Could you tell us the cost associated with this procedure and the number of visits to your Dr.s office? Also did your insurance co. pick up any of the tab? Thanks, Lee. |
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Title: Re: Surgery, 100% Stoped my CH Post by chjohn on Mar 9th, 2002, 8:55pm A word of wisdom....Proof of ANY CURE for CH would be No more CH attacks for years, not just absence of pain for a short period. I'll live with it, and wait ten years to see the side effects, the success rates, the mortality rate, ect. No knives for me thanks. John |
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Title: Re: Surgery, 100% Stoped my CH Post by David on Mar 10th, 2002, 10:24pm Reply to Glenda B, I had a few for the first 2 months after the surgery. For the last 3 months none. David |
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Title: Re: Surgery, 100% Stoped my CH Post by David on Mar 10th, 2002, 10:36pm Reply to Lee, Hi David, thanks for you post. Could you tell us the cost associated with this procedure and the number of visits to your Dr.s office? Also did your insurance co. pick up any of the tab? Thanks, Lee. I had Botox injections twice which I think cost $600 each. The surgery was expensive but was coverd almost entirely by my insurance but I had to argue my case. I also had 3 seperate procedures which increased the cost. I think the doctors cost was $8,000 and the out patient clinic charged $12,000. I had four visits before the operation, two for botox injections and two more to be sure the CH stopped. After the operation I had about 6 visits to check on my progress. |
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