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Topic: This will change your life (Read 1028 times) |
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harleydogg27
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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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rick
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Re: This will change your life
« Reply #1 on: Jun 4th, 2002, 2:14am » |
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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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| « Last Edit: Jun 4th, 2002, 2:15am by rick » |
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dannyboy
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Re: This will change your life
« Reply #2 on: Jun 4th, 2002, 2:24am » |
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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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Bedside manner is no substitute for a correct diagnosis - Bill Gates
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harleydogg27
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Re: This will change your life
« Reply #3 on: Jun 4th, 2002, 11:31am » |
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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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harleydogg27
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Re: This will change your life
« Reply #4 on: Jun 4th, 2002, 11:35am » |
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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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harleydogg27
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Re: This will change your life
« Reply #5 on: Jun 4th, 2002, 12:02pm » |
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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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rick
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Re: This will change your life
« Reply #6 on: Jun 4th, 2002, 12:16pm » |
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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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harleydogg27
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Re: This will change your life
« Reply #7 on: Jun 4th, 2002, 12:51pm » |
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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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rick
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Re: This will change your life
« Reply #8 on: Jun 4th, 2002, 2:22pm » |
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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  . It's great to hear of your success, for yourself, and your family.
Peace,
Rick
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harleydogg27
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Re: This will change your life
« Reply #9 on: Jun 4th, 2002, 2:43pm » |
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ric they usaully last any where from 2 to 3 months 4to7 a day .
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harleydogg27
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Re: This will change your life
« Reply #10 on: Jun 4th, 2002, 2:44pm » |
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sorry and yes it was during my cycle when I had the procedure but it doesn't have to be.
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rick
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Re: This will change your life
« Reply #11 on: Jun 4th, 2002, 3:42pm » |
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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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rick
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Re: This will change your life
« Reply #12 on: Jun 4th, 2002, 3:43pm » |
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Sorry, it's also fantastic that you got 2 years of remission.
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HarleyDoggsWife
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Re: This will change your life
« Reply #13 on: Jun 4th, 2002, 6:25pm » |
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He was about two months into his cycle , and thanks ric its wonderful that the headaches are gone.
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oringkid
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Re: This will change your life
« Reply #14 on: Jun 5th, 2002, 8:26am » |
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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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HarleyDoggsWife
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Re: This will change your life
« Reply #15 on: Jun 5th, 2002, 11:25am » |
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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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lazerboots
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Re: This will change your life
« Reply #16 on: Jun 5th, 2002, 1:29pm » |
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 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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HarleyDoggsWife
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Re: This will change your life
« Reply #17 on: Jun 5th, 2002, 1:39pm » |
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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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erik
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Re: This will change your life
« Reply #18 on: Jun 5th, 2002, 6:30pm » |
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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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HarleyDoggsWife
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Re: This will change your life
« Reply #19 on: Jun 5th, 2002, 7:20pm » |
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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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HarleyDoggsWife
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Re: This will change your life
« Reply #20 on: Jun 5th, 2002, 7:25pm » |
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Hey sorry but how do you find ouch and then how do you get involved?
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BobG
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Re: This will change your life
« Reply #21 on: Jun 5th, 2002, 7:59pm » |
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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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HarleyDoggsWife
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Re: This will change your life
« Reply #23 on: Jun 5th, 2002, 10:17pm » |
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Thanks Bob and ric!!!!!!! you guys are so nice!!!!!! ;D 
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HarleyDoggsWife
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Re: This will change your life
« Reply #24 on: Jun 24th, 2002, 3:32am » |
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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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