moto252o Posted November 14, 2013 Share Posted November 14, 2013 I wanted to know if anyone is aware or heard of this doctor. If not please research. He claims to have a cure for migraine and cluster headaches and I am speaking with him personally. He claims he can help, and help permanately with safe and non invasive surgery. Against my doctors advice( who never helped or took time to care anyway) I will be having this surgery. I will be traveling to South Africa and taking a leap of faith. There are YouTube videos of cluster patients he has cured with only 1 known fail to date. Link to comment Share on other sites More sharing options...
Ricardo Posted November 14, 2013 Share Posted November 14, 2013 This was brought up not too long ago... https://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1366151756/11#11 Link to comment Share on other sites More sharing options...
BostonHeadacheDoc Posted November 15, 2013 Share Posted November 15, 2013 Don't do it. I meant to comment on the other thread but never got around to it. There are a number of surgeons offering a surgical 'cure' of migraine and occasionally cluster headache as well. It appears this man ligates arteries, branches of the external carotid, and in addition can remove certain small facial muscles. Unfortunately this is all nonsense to me. These are brain disorders, and such procedures could never produce a 'cure' and it is very hard to find a biological rationale for improvement either. I have seen victims of migraine surgery but not cluster surgery like this...as yet. This man likely knows very very little about headache medicine- he is a surgeon with NO training in headache medicine and does NOT manage headache patients. I am open to odd treatments if there is some biological rationale but it is nonsense here. Happy to discuss further if needed. 'noninvasive surgery'- is n't that an oxymoron? It is easy to think that such procedures should only be last resort- but that is wrong- they should not be done at all. Sorry if I am stern here, but I do not like vulnerable people being taken advantage off by, at best, misguided physicians. Peace. BostonHeadacheDoc :-/ 2 Link to comment Share on other sites More sharing options...
spiny Posted November 16, 2013 Share Posted November 16, 2013 heilette had this done with adverse results as I recall. If I remember correctly, she had no pain relief but could not open her jaw but a small amount for a long time after this operation. She lives in South Africa! Link to comment Share on other sites More sharing options...
Ricardo Posted November 16, 2013 Share Posted November 16, 2013 Doc, thank you so much for that. Hit the nail right on the head. We are all desperate for some sort of help and people like this take advantage of that. It's so easy to say "but maybe! Maybe this might actually work!" My thought is maybe it does, and maybe in ten years when you have had that long of reduced blood flow to your brain you won't end up with serious cognitive problems. Truthfully you could come up with a billlion possible side effects that could happen because know one knows what this will really do. Elliot Shevell sure as hell doesn't. Ligating arteries and branches of the Carotid? As in lets do an experimental procedure to get less blood to your brain and see what happens in 20 years? Like the Doc said it's "NON-INVASIVE" (oooh....gamma rays are even less "invasive" maybe we should try that next )Not my kinda experiment. And cutting facial muscles? Sounds similar to an awesome therapy where you inject botox into facial muscles to get rid of migraines or clusters...unfortunately the makers of this therapy did not anticipate that when you paralyze facial muscles you end up getting a decrease in the strength of emotional experiences. The difference is that botox actually wears off... http://www.livescience.com/8325-botox-limits-ability-feel-emotions.html Bottom line to me--these people have half assed ideas on the origins of cluster headache that have not been proven in any way shape or form and they want us to be the guinea pigs so they can get a paper published. Don't let the pain and desperation of our disorder make you reach out for unproven therapies with unknown consequences. Patience is a very hard thing for people who have our disorder, but that is what I encourage. Patience and a buttload of hallucinogens. We are entering a whole new era of technology. We have improved the technology that we use to make technology to such a degree that our rate of innovation has skyrocketed. Remember the Jetson's? What was the one thing that is in the present that the Jetson's did not predict? The internet. The friggin internet. It changed everything everywhere real quick. It made it so that every type of technology and information sharing got a millionfold boost in productivity. And it was something that we did not predict at all. We are going to see some crazy shit in our lives (assuming we don't give up our lives to name seeking researchers in the name of science) and it is crazy shit that we can even begin to predict. Innovation is getting crazier and crazier and faster and faster. I predict we will have some real therapies and real answers if we can just hold out and not let this disease bring us down. (hard, I know) Elliot Shevel and his methods are dinosaurs. Patience and a buttload of hallucinogens and we will get through this. -Ricardo http://www.forbes.com/sites/singularity/2012/06/25/most-innovative-decade-in-history/  Thanks again, Doc. You might have just saved somebody from experimental surgery. Link to comment Share on other sites More sharing options...
Bejeeber Posted November 16, 2013 Share Posted November 16, 2013 Patience and a buttload of hallucinogens I believe Ricardo may have crafted a bonafide slogan! [smiley=vrolijk_1.gif] 8-) Link to comment Share on other sites More sharing options...
Hipshot Posted November 18, 2013 Share Posted November 18, 2013 Yes, thanks Doctor, I really had considered this surgery until Helitte told me her story. And good remarks Ricardo, you DO have a way with words that I enjoy reading Link to comment Share on other sites More sharing options...
Platypus Posted November 19, 2013 Share Posted November 19, 2013 BHD - Any comments on nerve decompression surgery? This seems to be in fashion for migraine, w/ some good reports from patients online, but I'm not sure what to think. -Platy Link to comment Share on other sites More sharing options...
ThatHurtsMyHead Posted November 19, 2013 Share Posted November 19, 2013 Patience and a buttload of hallucinogens and we will get through this. -Ricardo I love it!! I'm going to meet Ricardo one of these days... Maybe I should add "Meet Ricardo" to my bucket list along with Hang Gliding... PFW 1 Link to comment Share on other sites More sharing options...
Pcguy Posted April 3, 2014 Share Posted April 3, 2014 Hi I had surgery with Dr Shevel last August for Chronic daily headaches. It was a complete failure and left me with damaged nerves on the left side of my head, more pain than before the surgery and absolutely no improvement. I found the Headache Clinic unprofessional, and the "complete diagnosis" was just a joke. I am $20,000 dollars poorer but a lot wiser. I was desperate for a "cure" and in hindsight should have been far more cautious. The responses to my post surgery queries to Dr Shevel were dismissive and at one stage laughable when he recommended I try a biofeedback headband from a website in the U.S. If it seems too easy to be true...it usually is. I am happy to answer any questions related to the above. Link to comment Share on other sites More sharing options...
DrTy2 Posted April 3, 2014 Share Posted April 3, 2014 Thanks for sharing. I am personally savagely disgusted by those people who use their medical knowledge for profit and theft, instead of helping their patients. This is clearly a scam, and the worst type also, because it preys on weak people, as we all of us CHs are. Link to comment Share on other sites More sharing options...
ThatHurtsMyHead Posted April 3, 2014 Share Posted April 3, 2014 pcguy, Sorry to hear you had to deal with a quack for a doctor. Biofeedback has been tried over and over, over the years and has consistently proven useless for CH. Any DR... that works with CH should know that. He might as well have told you to take two aspirin. Once you 'bust' with the substances discussed on this board, you'll never go back to the script garbage, or surgeons just wanting to cut on peoples brains for money... J Link to comment Share on other sites More sharing options...
Bejeeber Posted April 3, 2014 Share Posted April 3, 2014 surgeons just wanting to cut on peoples brains for money Ugh that seems like it sums the situation up pretty bluntly but accurately. :'( At this point, drawing from memorable Ricardo and Jeff quotes, this topic could be retitled "Patience and a buttload of hallucinogens vs surgeons just wanting to cut on peoples brains for money" Link to comment Share on other sites More sharing options...
spiny Posted April 4, 2014 Share Posted April 4, 2014 DrTy2, because it preys on weak people, as we all of us CHs are Perhaps it is just my point of view, but I do not find Cher's to be weak people!!!!!! Cher's are some of the strongest people in the world. If we were ''weak' in any sense of the word, there would be a lot fewer of us. Desperate would be a better word I think. all the best, spiny Link to comment Share on other sites More sharing options...
DrTy2 Posted April 4, 2014 Share Posted April 4, 2014 Desperate would be a better word I think. Agreed. :-/ Link to comment Share on other sites More sharing options...
dannyboy Posted May 29, 2014 Share Posted May 29, 2014 Dear pcguy, I am so sorry to hear this. I'm Dr Shevels son and I know there is NOTHING he and we will not do to make this right. He is not a quack. But he is not God either. So he DOES FAIL sometimes! When he fails he lies awake at night, he gets angry and irritable, he suffers, not like you do, but he suffers. Sleepless nights, not like yours, but sleepless nights. Please would you give him the opportunity to make this right with you. Its not about the money, we make money from healing people not from their suffering. And we have to, we receive no finance or subsidy or grant. We are financed by our patients and we're now the biggest migraine research centre by patient flow in the world. And still we DO FAIL sometimes In the meantime please meet Deb Zale, Chonic cluster from New York and Lawrence Adonan, chronic cluster from Australia. Deb took 52 days to get right... The Doctor from South Africa was another failure of ours. There will be more failures and more successes. And the the more we go on the more we learn and the less failures there will be. Bostonheadachedoc... <<edited by FunGuy, comments were incorrect and could be considered demeaning>> Link to comment Share on other sites More sharing options...
dannyboy Posted May 29, 2014 Share Posted May 29, 2014 In their own words... Laurence Adenan - Deborah Zale - Link to comment Share on other sites More sharing options...
Ricardo Posted May 29, 2014 Share Posted May 29, 2014 So he DOES FAIL sometimes And that's the problem with this type of therapy. When a brain surgery "fails" the implications can be devastating. When the hallucinogens don't work we shrug our shoulders and try something else. If you want Clusterbusters to get on the side of your father I think he would have to start researching options that do not have the unfortunate side effects that brain surgery has. We've found non-hallucinogenic drugs that can stop clusters for months at a time--this is no small thing. Anyone that is still looking to slice a brain open to solve clusters is operating in yesterday and ignoring one of the most important discoveries in headache medicine. Sorry if that seems harsh, but peoples lives are at stake here. We can go into the myriad of reasons as to why brain surgery is an archaic, barbaric travesty of an option but I'm betting you just want to drop this. I do not understand how anyone could ever think it is a good idea to do this when the possible outcomes range from possible cluster relief to "It was a complete failure and left me with damaged nerves on the left side of my head, more pain than before the surgery and absolutely no improvement." or even death. For a start you could try and get your dad to pay back the $20,000 he got from PCguy's botched brain surgery. That's about as insulting as it gets. -Ricardo Link to comment Share on other sites More sharing options...
Ricardo Posted May 29, 2014 Share Posted May 29, 2014 We are financed by our patients and we're now the biggest migraine research centre by patient flow in the world. That scares the hell out of me. we make money from healing people not from their suffering. Until you give PCguy his $20,000 back you are most definitely making money from people's suffering. There will be more failures and more successes. Your cavalier attitude towards brain surgery failures may be the biggest problem of all. A failure for us means unbelievable pain, $20,000 less in your pocket, untold amounts of missed work and a shattered illusion that we are getting help. (unless of course we just die on the operating table) A failure for you guys means "oh, we've had some failures...but look here's TWO people that we didn't fail with!" Seems like we are just another number, a statistic. Lives are ruined. We are not just statistics. -Ricardo Link to comment Share on other sites More sharing options...
ThatHurtsMyHead Posted May 29, 2014 Share Posted May 29, 2014 dannyboy, Attacking one of the FEW doctors that listen to, and has helped many of us on this board, is not a smart move if you want anyone here to listen to you. BostonHeadacheDoc is one of the most respected and knowledgeable headache doctors when it comes to Cluster Headache.. PERIOD... To say CH is not his field is showing your knowledge very clearly. I'm sure there are treatments that help many people in different ways. Brain slicing would be my absolute least preferred. Of all the reports over the years I've read about, people having their brains cut on by surgeons: Few have been successful and MOST have a string of fallout issues related to their surgery, after care or new issues that result from the surgery. I would never advocate for someone to allow a doctor to take a knife to their brain... NEVER. I watched the Deborah Zale video end to end. Interesting that when the video was taken, she was 7 days pain free. There are a plethora of treatments and drugs that can give 7 or more days of pain free time. I wouldn't declare 7 days a "Cure" just to get people lined up for their brain slicing....... I remember when I took Verapamil for the first time. It was definitely a cure to me at the moment. I was on cloud 9, that the pain was gone... But like so many other cures, it didn't last... I'd be more interested to chat with her on her use of the hallucinogens she referenced in the video. Really interested if she followed the most current substance and procedures. (ie, wait 5 days between doses etc). It's commonly known there are lots of drugs that block busting as well as taking it too close together (w/o 5 days) can cause the bust to be ineffective. J Link to comment Share on other sites More sharing options...
ThatHurtsMyHead Posted May 29, 2014 Share Posted May 29, 2014 I tracked down Deb and sent her an email. Curious about her busting experience. I'll ping back after I chat with her. J Link to comment Share on other sites More sharing options...
ClusterHeadSurvivor Posted May 30, 2014 Share Posted May 30, 2014 Having 4 brain surgeries under my belt. Id like to think my advice/opinion is warranted. First let me tell you "There is NO CURE", no such thing. There is band aids..like LSD/Shrooms/DBS/ and so on.... It comes down to personal choice. People should make there own decisions, own educated decisions not based on what he / she said... facts Any type of surgery is life altering. Prior to my 1st surgery I was adament to have somethin done as I had tried traditional medicine. I am forever changed because of surgery and its really and open ended answer that can go on for days...but I wont bore you. My recommendation is research research research...and then research more. Ask, ask ask and then ask more. Think of it this way.... When I got told I was sick...that was it. No dr. told me how to live sick. He just said your sick It was up to me to live and learn how to live sick and cope Id find every single patient...and talk to them...people who have had the surgery...and go from there. thats my 2 cents Link to comment Share on other sites More sharing options...
dannyboy Posted May 30, 2014 Share Posted May 30, 2014 I didn't come here asking people to listen. There was a post made about us which was brought to my attention and I offered a response which I believe is fair Two things we haven't done on anyone Riccardo 1) Brain surgery. We have never performed brain surgery on anyone ever. We don't recommend any kind of brain surgery for CH. The surgery we perform is on the terminal branches of the external carotid artery. Here's a picture of some of these tiny vessels located just under the skin. The internal maxillary artery which runs close to the sphenopalatine ganglion and is the subject of the case reports we published in the American journal of maxillo facial surgeons is one of these tiny vessels (not visible in the pic) and is no where near the brain http://media.wix.com/ugd/80912a_aa7a1359350196c11f3732512db3ff2a.pdf 2) We don't use the word "cure" because its scientifically complicated. We can't stop patients using it when they believe it though I would certainly consider refunding pcguy Riccardo. I couldn't refund the entire amount as we can't pay for the opportunity to try and heal people when we fail, but we can make sure we don't make a profit. We've been through our records and can't identify who PCguy is. Obviously I'm not suggesting he post his personal details but if he would contact us privately and afford us the opportunity to try and make this right by him we would be deeply grateful Regarding Dr R... <<edited by FunGuy comments were inappropriate & incorrect.>> Link to comment Share on other sites More sharing options...
dannyboy Posted May 30, 2014 Share Posted May 30, 2014 If PCguy would contact us privately and engage with us about the negative consequences of the surgery he experienced we will write these consequences up and publish them in a medical journal as a case report. On my honour I have gone into dodgy parts of JHB to buy shrooms for patients in the past. I also tried to get the South African Medicine Controls Council to allow a study but they refused. We all do what we can Link to comment Share on other sites More sharing options...
dannyboy Posted May 30, 2014 Share Posted May 30, 2014 And in case you hadn't met Ryan or Paul yet... they'd be glad to be contacted if you wish to talk to them In their own words Ryan Paul Link to comment Share on other sites More sharing options...
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