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Title: This will change your life Post by harleydogg27 on Jun 4th, 2002, 1:10am My name is todd and I have suffered with clusters for about 7 yrs now I'm 27 and 2 yrs ago I met a dr by the name of richard leth he is an MD in pain management from europe. and now lives in Des Moines Iowa my headaches got so bad I turned to him because a neurologist could do nothing except provide drugs. Dr leth sat me down and told me about a new procedure called Sphenopalatine Ganglionnotomy, Radiofrequency. An active electode is placed in the desired location once the position is determined heat is generated as the current flows from the rf generator. the temp is monitored and adjusted to a target temp. for 30 to 60 sec. the temp and time creates the desired lesion. the lesion is extremely small accurate and effective. its done outpatient and insurance will cover. their is a rapid recover time and no loss of work . believe me this has changed my life no more headaches . its the most awesome feeling knowing I can go to bed at night and not have to worry about waking up with any pain. he is the only Dr in the us that performs this surgery if you would like more info please email me for number and addy and any other questions!my email is Harleydogg27@cs.com. god bless |
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Title: Re: This will change your life Post by rick on Jun 4th, 2002, 2:14am Exactly where is the electrode placed? How long ago did you have this procedure? Are you chronic are episodic? If you are eposodic, how long do your cycles normally last and how often do you have them? Were there any short or long term side effects as a result of the procedure? You need to provide more detail in your post so that we can have a more complete understanding of what you are trying to explain. |
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Title: Re: This will change your life Post by dannyboy on Jun 4th, 2002, 2:24am Hi Todd, Amazing stuff - there's been a journal article published about this previously. Do you have ... A) absolutley no side effects B) some minor side effects which are nothing compared with clusters C) Some pretty bad side effects but you can live with em D) Horrendous side effects but better than cluster at least Thanks Dannyboy |
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Title: Re: This will change your life Post by harleydogg27 on Jun 4th, 2002, 11:31am I just had my second surgery yesterday at 11 the normal side effects for me is a stuffed up nose which went away after about 2 months this will most likely be my last surgery , when you reach a certain age your nerve stops growing back which is what mine did and the side effects are minimal all I can handle compared to the headaches.I will post the whole entire procedure on the site.the nerve they cut is located under the roof of the mouth they stuck a needle in between the two jaws, they move it upand place above roof of mouth then they send the radiowaves to the nerve and then they cut that nerve in pieces.the procedure takes about 20 min recovery about an hr then no more headaches. |
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Title: Re: This will change your life Post by harleydogg27 on Jun 4th, 2002, 11:35am sorry my headaches were episodic they tend to go about every 4 months I can have as many a 4 to 6 a day I was on everything from imitrex to steroids, percuset you name it i've tried it this is the only thing that works for me. you will be able to live a normal life without fear of the dreaded headaches. |
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Title: Re: This will change your life Post by harleydogg27 on Jun 4th, 2002, 12:02pm It is called radio denervation. Simply radiofrequency denervation is a procedure that involves the use of heat directed from a generator to a carefully placed electrode to destroy very select tissues thus interupting pain pathways radio frequency is state of the art extremely safe and treats a number of conditions which we were previously unable to treat. this is very individualized and depends on several factors such as age and healing factors the pain may reoccur like mine did after 2 yrs if it does return the procedure can be repeated till the time the nerve stops growing back.Radio frequency techniques can be used to treat chronic headaches such as clusters.for more information on the Dr or the procedure email me and I will copy all that I have to much to put on post thank you. |
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Title: Re: This will change your life Post by rick on Jun 4th, 2002, 12:16pm HD- I'm still a little confused. You get hit for 4 months at a time every year? Every 6 months? Every 2 years? Did the procedure actually cut short a cycle for you? Or did you have it out of cycle, and the beast didn't show up when it was supposed to? What exactly are the side effects you experienced? And how old are you? Thanks- Rick |
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Title: Re: This will change your life Post by harleydogg27 on Jun 4th, 2002, 12:51pm Okay ric i'm 27 yrs old my cycles go about every 4 months or so . I had the procedure done the first time 2 yrs ago . it stopped all headaches till about 2 months ago then they started again.when you go in for the procedure you do not have to have one of the headaches or have to be in a cycle . one of the things that happens during the procedure is they bring on the headache so they know exactly what nerve they are to cut . then they cut it . hopefully this will be the last one I have to have my age has alot to do with it late 30 's they say is when the nerve stops growing back. all I can really tell you is the clusters stopped me from working spending time with my wife and kids I felt like an invalid until I met this Dr who changed my life for 2 yrs I had no pain and now since I had the procedure again I know I will have a better life. ric if you would like me to mail you the whole procedure i can and I can give you the name and number to the Dr so you can get all the info you need thank you. |
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Title: Re: This will change your life Post by rick on Jun 4th, 2002, 2:22pm Thanks man. I'm actually doing fine with shrooms right now, but this is good information to have. I also wanted to propose some questions that others reading this might be thinking of. Sorry, again, I have to ask: Your ch's show up every 4 months and then last for how long? Did you have the procedure done while in cycle? Thanks for all the info 8). It's great to hear of your success, for yourself, and your family. Peace, Rick |
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Title: Re: This will change your life Post by harleydogg27 on Jun 4th, 2002, 2:43pm ric they usaully last any where from 2 to 3 months 4to7 a day . |
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Title: Re: This will change your life Post by harleydogg27 on Jun 4th, 2002, 2:44pm sorry and yes it was during my cycle when I had the procedure but it doesn't have to be. |
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Title: Re: This will change your life Post by rick on Jun 4th, 2002, 3:42pm Dogg, That's where it sounds most promising, if it "broke" your cycle. How far into your cycle were you at the time? -R |
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Title: Re: This will change your life Post by rick on Jun 4th, 2002, 3:43pm Sorry, it's also fantastic that you got 2 years of remission. |
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Title: Re: This will change your life Post by HarleyDoggsWife on Jun 4th, 2002, 6:25pm He was about two months into his cycle , and thanks ric its wonderful that the headaches are gone. |
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Title: Re: This will change your life Post by oringkid on Jun 5th, 2002, 8:26am Please don't take this wrong, and I am very happy that the pain has ceased for you, but, when I was younger, in my 20s I used to get my cycle twice a year. Now I get it once every 2 years...so, the beast does change it's habits. My question for you on this procedure is, do you now have facial numbness? If this cuts up the nerve I would think you would have numbness. Also, do you have to use eyedrops now to keep your eye lubricated? Hope your pain NEVER comes back! Thanks for sharing! Sherry |
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Title: Re: This will change your life Post by HarleyDoggsWife on Jun 5th, 2002, 11:25am No he has no facial numbness, and no problems with his eyes at all. the only side effect he has ever gotten was a stuffed up nose for about 2 months. and he was swollen around the needle point for about 3 days. thanks I am glad he is pain free right now also anything to him is better then the beast!! |
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Title: Re: This will change your life Post by lazerboots on Jun 5th, 2002, 1:29pm :)hi thanks for the posting, very interesting.glad at least one person is free from the beast... as welive in the uk i dont suppose that our nuro's have heard of the procedure..but we will be metioning it to them as we go to see the nuro on tuesday.....our nuro is taking in the lines of surgery to kill the ganglion nerve, but we have to talk seriously about this as we have no stats as to its success rate , but as i said thank you again for replying to my posting, this site is our lifeline, good luck for the future and i hope the beast is gone for good xx |
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Title: Re: This will change your life Post by HarleyDoggsWife on Jun 5th, 2002, 1:39pm Thanks lazer me too I am glad my hubby is without the beast I hate to sit and watch him suffer knowing there is nothing I can do, I am here for him that is all! if you want all the info email me and i'll give it all to you then you can know exactly what to ask, the Dr that performed the the procedure learned it in sweden. good luck!!!! |
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Title: Re: This will change your life Post by erik on Jun 5th, 2002, 6:30pm posted a question last month about having the tri nerve cut the responces i got on this board as well as thru private e mail sure sound like the same procedure as a lot of people described. happy to hear that it is working so well for you. all responces i got were not good at all some of them talked about the ecxact same procedure but had major complications. including facial pains blindeness paralises to the side where the electrical stimulation or so called cartarasation was done. I have been on a fentanyl patch since may 23 and have had no headache since istarted with it life is just wonderfull rite now it changed my life. just keep on reading these postings and you will find that there is always someone who has not had success with treatment that might be working for you.we all might be suffering from the same but so far no cure has been found for us. hope you will join Ouch and help us find a real cure and spread the word about this terrible condition. PFDAN to all people in pain. ERIK |
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Title: Re: This will change your life Post by HarleyDoggsWife on Jun 5th, 2002, 7:20pm Eric you are so right !!!! I just thought it would be nice for hubby to post the procedure . It has worked for him, and i do wish it would work for everyone. I know when the beast comes here I feel so dang helpless he sits in misery pounding his head in the dark ,smoking one right after the other, his eye swells shut he cries, and then when its finally over he looks like he was rolled over by steam engine. I wish this pain on noone . I wish I could find a cure . I love my hubby very much and would do anything for him and if I could take them away forever I would. Thank gawd for this procedure because for us he is pain free now. And no, i'm sure it does not work for everyone , it was just a suggestion to ask about it, that was all. kate |
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Title: Re: This will change your life Post by HarleyDoggsWife on Jun 5th, 2002, 7:25pm Hey sorry but how do you find ouch and then how do you get involved? |
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Title: Re: This will change your life Post by BobG on Jun 5th, 2002, 7:59pm Glad to hear your hubby is pain free. On the left side of the screen you'll see a list of radio buttons. Click the one that says OUCH website. |
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Title: Re: This will change your life Post by rick on Jun 5th, 2002, 9:28pm Mrs. HarleyDogg, http://www.clusterheadaches.org/ ;D, Rick |
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Title: Re: This will change your life Post by HarleyDoggsWife on Jun 5th, 2002, 10:17pm Thanks Bob and ric!!!!!!! you guys are so nice!!!!!! ;D ::) |
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Title: Re: This will change your life Post by HarleyDoggsWife on Jun 24th, 2002, 3:32am Well I really hate putting this post in here because we had crossed our fingers, prayed ,did it all but oringkid I think you were right!!!!!! They came back and worse this time the sugery did not help. I am sorry if I got anyones hopes up! pisses me off! I don't know so much if the surgery didn't help I mean it did for two yrs so we thought but like oringkid said it could have been his remission!!!! Butthen again we will never know, it might help some but this time it did not work!!! :( I am sorry!!!!! we are thinking of trying it again will inform if anything changes!!!!! Kate :'( |
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Title: Re: This will change your life Post by simpson1974 on Jun 24th, 2002, 7:48am So sorry to hear it didn't work out. Keep trying to find aid, though... I'll pray for your family. |
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Title: Re: This will change your life Post by rick on Jun 24th, 2002, 6:26pm Mr. & Mrs. Dogg, I'm really sorry to hear this, it is disappointing. Life can get your hopes up sometimes, only to turn around and throw you a curveball. But no matter what, remember that you are now part of this family. -Rick |
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Title: Re: This will change your life Post by kristi on Jun 24th, 2002, 8:12pm I can only imagine the disappointment you are feeling and am truly sorry things did not work out better. Keep researching other options here on the board. Hopefully you will find something else that will get you painfree. Sending painfree blessings. K |
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Title: Re: This will change your life Post by HarleyDoggsWife on Jun 25th, 2002, 1:48am You guys are so wonderful I am so glad we have found a place that we can call home, someone who understands the hell hubby goes thru and a place where I can find relief as well . Simpson,Rick, and Kristi thank you, you are very kind and you have touched our hearts deply!!!! :D |
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Title: Re: This will change your life Post by mwt on Jun 29th, 2002, 2:36am Mr. & Mrs. Dogg I read you post and my heart is broken. I am so sorry the surgery did not work. I'm on 14 years of CH and any remission helps. My wife and I will be praying for you. Mark |
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Title: Re: This will change your life Post by kim on Jun 29th, 2002, 11:21am Hey Mr. and Mrs. HarleyDogg, you are both in my thoughts and prayers. That is a tough break and my heart goes out to you both. hang in and back to the drawing board. Things will get better. Might look gloomy now, keep the faith!!!!! Warmest regards to you both! Kim |
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Title: Re: This will change your life Post by HarleyDoggsWife on Jul 1st, 2002, 5:15pm :D Thanks Again Guys!!!!! :-* Kate |
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