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Topic: Nerve radiosurgery--evaluation (1 of 2) (Read 1226 times) |
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Bob_Johnson
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Nerve radiosurgery--evaluation (1 of 2)
« on: Feb 7th, 2007, 10:21am » |
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Neurosurgery. 2006 Dec;59(6):1252-7; discussion 1257.
Trigeminal nerve radiosurgical treatment in intractable chronic cluster headache: unexpected high toxicity.
Donnet A, Tamura M, Valade D, Regis J.
Department of Neurosurgery, Hopital la Timone, Marseille, France. adonnet@AP-HM.fr
OBJECTIVE: We have previously reported short-term results of a prospective open trial designed to evaluate trigeminal nerve radiosurgical treatment in intractable chronic cluster headache (CCH). Medium- and long-term results have not yet been reported. METHODS: Ten patients presenting with a severe and drug-resistant CCH were enrolled (nine men, one woman). The radiosurgical treatment was performed according to the technique usually used for trigeminal neuralgia in our department. A single 4-mm shot was positioned at the level of the cisternal portion of the trigeminal nerve. The median distance between the center of the shot and the emergence of the nerve was 9.35 mm (range, 7.5-13.3 mm). The median of this maximum dose to the brainstem was 8.0 Gy (range, 4.0-11.1 Gy). Mean age was 49.8 years (range, 32-77 yr). Mean duration of the CCH was 9 years (range, 2-33 yr). The mean follow-up period was 36.3 months (range, 24-48 mo). RESULTS: Two patients had complete relief of CCH. One patient had a good result with evolution in an episodic form. Seven patients had no improvement. Nine patients developed a new trigeminal nerve disturbance: three developed paresthesia with no hypoesthesia and six developed hypoesthesia, including two patients with deafferentation pain. Only one patient had neither paresthesia nor hypoesthesia. CONCLUSION: We confirmed, with medium- and long-term evaluation, the high rate of toxicity and failure of the technique. The high toxicity, despite a methodology identical to the one used in trigeminal neuralgia, leads us to suspect an underlying specificity of the nerve in CCH. We do not recommend radiosurgery for treatment of intractable CCH.
PMID: 17277687
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clusterwife
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Re: Nerve radiosurgery--evaluation (1 of 2)
« Reply #1 on: Feb 20th, 2007, 3:29pm » |
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Blah-Blah-Blah! If you are at your whits end, try it! My hubby did, and he broke through the odds and it worked. TN surgery by Dr. Wayne Hurt saved his life. He was chronic for 6 years, he is 37 now and his face on the left side is numb, but not paralyzed. There's no droop, you probably couldn't be able to tell by looking at him. Try everything you can, and when all else fails, there are more options, even surgery! Good luck and God bless, Leah.
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| « Last Edit: Feb 20th, 2007, 3:31pm by clusterwife » |
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AlienSpaceGuy
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Re: Nerve radiosurgery--evaluation (1 of 2)
« Reply #2 on: Feb 22nd, 2007, 8:26am » |
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Blah-Blah-Blah!
It is well known that surgery for TN (Trigeminal Neuralgia) has a very high success rate, over 90%. But Trigeminal Neuralgia is an entirely different beast than Cluster Headaches.
To plug all the time TN surgery on a Cluster Headache site is not very helpful, to say the least 
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clusterwife
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Re: Nerve radiosurgery--evaluation (1 of 2)
« Reply #3 on: Mar 1st, 2007, 2:43pm » |
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By giving hope to the ones in dire pain and misery, I hope to instill in them the courage to keep living. I agree, TN surgery isn't THE answer, but it is a viable one. No harm in trying.....Leah.
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BB
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Re: Nerve radiosurgery--evaluation (1 of 2)
« Reply #4 on: Mar 1st, 2007, 6:20pm » |
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on Mar 1st, 2007, 2:43pm, clusterwife wrote:| I agree, TN surgery isn't THE answer, but it is a viable one. No harm in trying.....Leah. |
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No harm in trying ?
Please correct me if I am wrong, because I am getting a bit confused by your contradicting posts. So your husband had CH on the left side , had surgery and now the whole side is numb and he is still getting hit on the left side and is still having pain there. He is now back on medication to try to control the hits, again. Still you reckoned the surgery was successful and you would recommend to others ?
No harm ? I would rethink more than twice that its a good option.
JMHO.
Annette
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clusterwife
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Re: Nerve radiosurgery--evaluation (1 of 2)
« Reply #5 on: Mar 8th, 2007, 2:50pm » |
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In no way were we mislead in to thinking the surgery was going to be a sure-fire method. There are/were risks to contend with. He thought/prayed about it for over a year, and most of the people around him were opposed. He had his family come and "kiss" his left side before getting it numb, just so he could "remember" what it fells/felt like. We went to the beach, so he could feel the waves splashing on his face, one more time. But, in the worst of it all, he purchased a gun and was ready to use it on himself. So, don't think he made this decision without weighing the consequences. His pain is about a third as bad or frequent. Eventhough his nerves were killed on his left side, he still experiences pain there, just not as accute as before. Before surgery, when he'd get hit, he'd be in the floor screaming. Now, he might take a shower, or put ice on his eye, or go outside. His life is more manageable, that's all I know. Hope this clears things up for ya! Leah.
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Gator
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Re: Nerve radiosurgery--evaluation (1 of 2)
« Reply #6 on: Mar 8th, 2007, 5:50pm » |
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So let me see if I have this right:
on Oct 3rd, 2006, 10:53am, clusterwife wrote:| Hi, I'm clusterwife, and as in my name, I'm married to a chronic clusterhead. He had TN surgery on his left side, worked well for a couple of years. Now he is getting hits on the right side. Surgery again is out of the question, he has to suffer for his life. He is depressed, and feeling lost. I need all the help and support from you all on the board to help him the best I can. I tried to tell him he needs to get back on the meds to "prevent" them from coming, but he is reluctant. Thanks for listening. |
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* Had CH on left side.
* Had TN surgery on left side
* Life was good for a while
* CH returned on right side
* Will suffer the rest of his life rather than have surgery again
on Feb 20th, 2007, 3:29pm, clusterwife wrote:| Blah-Blah-Blah! If you are at your whits end, try it! My hubby did, and he broke through the odds and it worked. TN surgery by Dr. Wayne Hurt saved his life. He was chronic for 6 years, he is 37 now and his face on the left side is numb, but not paralyzed. There's no droop, you probably couldn't be able to tell by looking at him. Try everything you can, and when all else fails, there are more options, even surgery! Good luck and God bless, Leah. |
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* Left side of face is numb, but life is good
* Surgery is a good thing
on Mar 8th, 2007, 2:50pm, clusterwife wrote:| In no way were we mislead in to thinking the surgery was going to be a sure-fire method. There are/were risks to contend with. He thought/prayed about it for over a year, and most of the people around him were opposed. He had his family come and "kiss" his left side before getting it numb, just so he could "remember" what it fells/felt like. We went to the beach, so he could feel the waves splashing on his face, one more time. But, in the worst of it all, he purchased a gun and was ready to use it on himself. So, don't think he made this decision without weighing the consequences. His pain is about a third as bad or frequent. Eventhough his nerves were killed on his left side, he still experiences pain there, just not as accute as before. Before surgery, when he'd get hit, he'd be in the floor screaming. Now, he might take a shower, or put ice on his eye, or go outside. His life is more manageable, that's all I know. Hope this clears things up for ya! Leah. |
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* Still having pain on left side
----- edited to add -----
on Mar 1st, 2007, 2:56pm, clusterwife wrote:| We thought the headaches on the right side were cluster, ended up being a bunch of bad teeth. |
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* Ah, I see. The pain on the right side was "a bunch of bad teeth"
on Mar 8th, 2007, 2:28pm, clusterwife wrote:| Kevin switches from his numb side to the other too. |
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* But on March 1, 2007 you said it was just bad teeth
----- edit concluded -----
Several people have confronted you about Kevin still having pain on his left side even after surgery. You state he is still having pain, but not as much, but in your first post you said the left side was numb, but fine - it's the right side the attacks returned to. Surgery was so great that you would recommend it for others, but Kevin would rather suffer for the rest of his life than have the surgery again.
The problem with telling lies is that you have to remember what you said to who and when. The fact that you went back on March 1, 2007 and changed your post to remove references to the right sided pain just proves that it has all just been a sick game.
on Oct 3rd, 2006, 10:53am, clusterwife wrote:Hi, I'm clusterwife, and as in my name, I'm married to a chronic clusterhead. He had TN surgery on his left side, worked well. He is depressed. I need all the help and support from you all on the board to help him the best I can. I tried to tell him he needs to get back on the meds, but he is reluctant. Thanks for listening.
« Last Edit: 03/01/07 at 14:04:39 by clusterwife »
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The gig's up. When you came here the first time, you promoted surgery and would not hear that it was a last ditch thing that frequently fails. When you returned with your post about "your husband's" pain, you were accepted and consoled by people with too much compassion to doubt a cry for help. Unfortunately (or maybe fortunately for us), like a dog with a bone, you couldn't let go of the surgery thing and just feel good about the love and acceptance you tricked people into giving you.
I can't comprehend the sad mentality that would invest so much time and effort into promoting a lie just to gain sympathy from a group of people you have never met and probably never will. I would suggest you find a good psychiatrist and try to work out whatever underlying problems you have so that you don't feel the need to prey on others' emotions.
As sad as I am for you, I am sadder still for the people you duped. People who felt your alleged pain on a personal level and took you, or rather who they thought you were, into their hearts.
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| « Last Edit: Mar 9th, 2007, 5:44am by Gator » |
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AlienSpaceGuy
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Re: Nerve radiosurgery--evaluation (1 of 2)
« Reply #7 on: Mar 8th, 2007, 9:10pm » |
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Plugging TN (Trigeminal Neuralgia) surgery for clusterheadaches all the time is worse than if the Sinusbusters would recommend Ali's meegraine surgery for CH.
Just MHO, ASG 
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Sean_C
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Re: Nerve radiosurgery--evaluation (1 of 2)
« Reply #8 on: Mar 8th, 2007, 9:53pm » |
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on Mar 8th, 2007, 5:50pm, Gator wrote:| I can't comprehend the sad mentality that would invest so much time and effort into promoting a lie just to gain sympathy from a group of people you have never met and probably never will. I would suggest you find a good psychiatrist and try to work out whatever underlying problems you have so that you don't feel the need to prey on others' emotions. |
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I'm with Mike.
http://www.munchausen.com/
Sean...................................
edit: Nice to see you Uieli, and I hope all is well my brother 
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| « Last Edit: Mar 8th, 2007, 9:54pm by Sean_C » |
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Lizzie2
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Re: Nerve radiosurgery--evaluation (1 of 2)
« Reply #9 on: Mar 8th, 2007, 10:26pm » |
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When I went to a neurosurgeon about the posibility of an occipital nerve stimulator, one of the things he said to me was that never let anyone cut the nerves of my face or do anything that might leave me with paralysis or numbness on half my face. He was saying a lot about my age and also what this would do to my face. But the ultimate point (because I'd give up cosmetics if it meant being pain free for real) is that it doesn't work well enough or enough of the time to be worth doing that to yourself.
If clusterwife's husband did indeed have this surgery, then maybe the animosity comes from the fact that nobody likes to hear that the surgery they chose to have was a bad idea, in retrospect. Then you're living with the guilt till the end of time. And as it sounds like at this point, he is in a lot of pain on the right or possibly still having pain on the left, they are probably already questioning "was it worth it" to lose what he lost. Just a theory....
I wouldn't do it, but I guess everyone has to decide for themselves. There are many times that I would like to slice into my face and rip out the nerve - but I still hear too many bad things about this to even think about doing it.
Carrie
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Gator
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Re: Nerve radiosurgery--evaluation (1 of 2)
« Reply #10 on: Mar 9th, 2007, 4:23am » |
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Carrie, I understand what you are saying and I agree that if a person made a choice that didn't turn out for the best, they may be bitter/upset/disappointed/whatever about how things turned out. But to try to push this thing that did not work for them onto someone else, even though personal experience and years of research show it is not consistently successful enough to be a recommended procedure, is just sick.
As Kevinpix, he crashed and burned here. He tried to defend his position by posting as his mother, but people were dubious. He went away and came back as his wife and was accepted and consoled and given the love this family can give. Things were going great until this series of studies were posted. Then he snapped. He could not stop himself from posting that, regardless of what the research revealed, this surgery was a good thing. People became suspicious and started looking at old posts and started asking questions. Things that were posted in October of last year did not match things being posted now. Then in an attempt to fix the contradictions, he went back and changed his original post. There were two problems with this: 1. by now people had quoted the original post and 2. the message board time and date stamps changes. Now both the original post and the changed version are on display for all to see along with all the stuff in between.
What's sad is that as "clusterwife" he had gained a sympathetic ear and was accepted by the people on this board. He even contributed with some supportive posts to others. Were it not for some sick compulsion to push this surgery, he probably could have remained here as the dedicated and loving supporter indefinitely.
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Lizzie2
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Re: Nerve radiosurgery--evaluation (1 of 2)
« Reply #11 on: Mar 9th, 2007, 6:03am » |
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on Mar 9th, 2007, 4:23am, Gator wrote: But to try to push this thing that did not work for them onto someone else, even though personal experience and years of research show it is not consistently successful enough to be a recommended procedure, is just sick.
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I agree, totally. I haven't been around consistently enough to see that whole KevinPix thing develop - but I see what you're saying on that, too. I guess that small part of me tries to give people the benefit of the doubt, but I also hadn't seen the whole story. Thanks. 
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LeLimey
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Re: Nerve radiosurgery--evaluation (1 of 2)
« Reply #12 on: Mar 9th, 2007, 6:23am » |
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I worry terribly about the people who read these boards and never join or post.
Seeing some of the appalling advice I HAVE seen here from time to time contradicted and exposed by the regular posters gives me a lot of comfort.
We all have to remain vigilant to such blatant contradictions as posted above whilst remaining open minded - no easy task but on this thread it shows how well it can be done.
Thanks guys, hopefully no one will be taken in by the absolute drivel exposed here.
Helen
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nani
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Re: Nerve radiosurgery--evaluation (1 of 2)
« Reply #13 on: Mar 9th, 2007, 8:08am » |
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on Mar 9th, 2007, 4:23am, Gator wrote:As Kevinpix, he crashed and burned here. He tried to defend his position by posting as his mother, but people were dubious. He went away and came back as his wife and was accepted and consoled and given the love this family can give.
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That's total bullshit. As already stated by myself and another long time member...
they are not one and the same. I spoke to him and she spoke to his mother. I've been in contact with Leah since she joined. Kevin hasn't been back (and I sure as hell don't blame him). He didn't crash and burn, he was tied to the stake and y'all had the matches ready.
Y'all make me sick sometimes. If you wanna start picking apart people's posts... there are a whole lot more than Leah's... and in many ways more dangerous. You can't get surgery without a doctor agreeing. You can get some pretty bad advice from a doctor, too. 
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Gator
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Re: Nerve radiosurgery--evaluation (1 of 2)
« Reply #14 on: Mar 9th, 2007, 8:53am » |
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Nani, if they are not one and the same, then it is an even sicker and sadder tale the the one proposed above.
No one said the surgery would never work for anyone. The posted research studies said it was not consistently successful enough to be a recommended treatment. Nothing more, nothing less. It wasn't a personal attack on either her or her husband or anyone else who may have had the surgery.
She lashed out at the posting of the studies and contradicted her initial post. No one put words in her mouth or took anything out of context. The quoted posts are hers. She could not remember what she said from one post to another or from one board to the next. Why else would she go back and alter her original "please help me" post so that it matched her current posts?
You have a good heart and you go out of your way to help people and give them the benefit of the doubt. This is not a bad thing. There needs to be people around to balance out the ones who are way too quick to attack.
I'm sorry if you don't want to see it or believe it, but it is all there and all posted by her. All anyone else did was recognize inconsistencies and quote them side by side for everyone to see. If you are getting sick, maybe it is because you don't want to admit you got duped right along with the rest of us.
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clusterwife
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Re: Nerve radiosurgery--evaluation (1 of 2)
« Reply #15 on: Mar 13th, 2007, 9:57am » |
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Gator, most of my information is through my conversations with Kevin. He doesn't talk much. I take it as him having a good day. Then, to my surprise, he says that he was quiet BECAUSE he was having some pain. I try to help others with hope. I appreciate talking here, esp. with Nani and BarbaraD. I"ve spoken on the phone, Nani called Kevin at work to see if he was real, His mother and him are not the same. He doesn't use the computer, maybe yahoo radio once a month or so. I'm sure the info has morphed over time. At first, the first two years, he felt he was cured. That's when he posted as kevinpix. Then, out of nowhere, he started to get hits on his right side. So, yes, the determination that the surgery was a success changed from cure to extreme treatment. Then, after a year of rightsided hits, the sucess became less again. Now, he seems more depressed. So, in my oppinion, and others, I'm real, kevin is real along with his pain, his mother is real, and I hope this clears things up. If not, I'll try. Painfree wishes! Leah.
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Gator
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Re: Nerve radiosurgery--evaluation (1 of 2)
« Reply #16 on: Mar 13th, 2007, 4:14pm » |
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on Mar 13th, 2007, 9:57am, clusterwife wrote:| Gator, most of my information is through my conversations with Kevin. He doesn't talk much. I take it as him having a good day. Then, to my surprise, he says that he was quiet BECAUSE he was having some pain. I try to help others with hope. I appreciate talking here, esp. with Nani and BarbaraD. I"ve spoken on the phone, Nani called Kevin at work to see if he was real, His mother and him are not the same. He doesn't use the computer, maybe yahoo radio once a month or so. I'm sure the info has morphed over time. At first, the first two years, he felt he was cured. That's when he posted as kevinpix. Then, out of nowhere, he started to get hits on his right side. So, yes, the determination that the surgery was a success changed from cure to extreme treatment. Then, after a year of rightsided hits, the sucess became less again. Now, he seems more depressed. So, in my oppinion, and others, I'm real, kevin is real along with his pain, his mother is real, and I hope this clears things up. If not, I'll try. Painfree wishes! Leah. |
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Leah, is it? Look, it's all well and fine for a person to "spread the good news" when the news is good. Hope is good. False hope is destructive. Playing games with people in pain is just sick.
Kevin came here in July of 2006 - 8 months ago - saying:
on Jul 23rd, 2006, 5:56pm, kevinpix wrote:| i'M A CHRONIC CLUSTERHEAD of 4 years. I'm a male, 36 yrs old. Last year I had trigenial noralsia surgery, excuse my spelling. |
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A few days later Joyce, his mother, came on saying:
on Aug 2nd, 2006, 10:48am, JoycenSA wrote:I'm a new poster, and I am KevinPix's mom.
I have been a "reader" of the website for approximately a year--in an effort to educate myself and to understand cluster headaches. |
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So far we have that Kevin had surgery in 2005, based on information his mother found on this website. Not a totally unbelievable scenario.
You came here just over two months later saying
Quote:on 10/03/06 at 09:53:24, clusterwife wrote:
He had TN surgery on his left side, worked well for a couple of years. |
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This puts the surgery in 2004, unless you factor in your post above that said the right sided pain came back a year ago. The two years of "success" plus one year of right-sided remission puts the surgery back in 2003.
When questioned on the right sided pain, initially you said it wasn't ch, but rather a bunch of bad teeth
But wait it couldn't have been a bunch of bad teeth because he had most of them pulled before he was diagnosed with ch:
on Aug 1st, 2006, 3:37pm, kevinpix wrote:| Yea, my doctor first said it was my teeth, I was dumb and had most taken out, only to wear a mouth piece that sucks. I'm 36 with dentures, how about that for sucking? Then they thought I was having migranes, My Mom finally went to this site and diagnosed me with chronic clusters, took the CH test, took the results to him, and the rest is history!! |
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In his initial post, Kevin stated in that he was chronic for 4 years before surgery, yet in your post on 2/20/07, you say Kevin was Chronic for 6 years.
Unless you and Kevin live in some sort of timewarp, it is impossible for his mom to find the site a year before posting, get Kevin diagnosed (AFTER she found the site) and for his to have had the surgery for 2 years and then suffer from right side hits for a year.
I was not one of those who taunted and persecuted Kevin when he first posted. In fact, here is my response to his thread:
on Jul 29th, 2006, 10:28am, Gator wrote:| ...As to the original purpose of this thread, cutting/killing the nerves is not an option I would consider right now, but that is a personal choice. If Kevin is pain free and happy with his decision, then more power to him. Yes, a large number of people who have this surgery have their CH come back after several years, but not all. I hope you're one of the lucky ones, Kevin. |
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It was your post of 2/20/07 that made people suspicious and prompted them to go back and examine the prior postings of both Kevin and you. Your inability to keep the story straight from one post to the next and ultimately changing your initial plea for help really sealed the deal. The inconsistencies quoted here and in previous posts are overwhelming.
On the odd chance that you really are Kevin's wife and not Kevin himself, then you are a terrible wife and supporter who knows nothing of her husband or his condition and doesn't know if he's in pain or where or when.
From what I can see, info didn't morph over time, it changed outright to answer the questions as they came. This whole thing has sickened me and I really see no sense in playing this game any further.
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clusterwife
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Re: Nerve radiosurgery--evaluation (1 of 2)
« Reply #17 on: Apr 12th, 2007, 2:34pm » |
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Gator, apparently Kevin and I weren't together when the headaches started. From the time that he was properly diagnosed to the time heactually started having them is different by many years. You'd have to ask him personally. I'll try to explain the best I know:
2001- started to get weird headaches
2002-started to go to dentist
2003-got diagnosed
2004-had surgery in june
2006-had right sided hit
2007-has hits on both sides
I'm sorry to confuse anyone, all of this hype about dates blows me away. He got the surgery, some days are better than others. He's quiet and grumpy too. He is real, I'm real, and his mother is real. I wish we had the knowledge back then to make an even wiser decision, but kevin was at his wits end and crashing out of control. I wish you could talk to him Gator, he really is a nice guy. Nani and BarbaraD have talked to him, took me forever to get him off Barbara, only to talk to her myself for a long time. I don't have a college degree, I'm still computer challenged. I try to post honestly. Yes, I changed my post a time or two, only to update the info that has changed. I don't want to make you mad, just to explain, in my words, the compassion that I have. I hope you have a painfree day! Leah.
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clusterwife
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Re: Nerve radiosurgery--evaluation (1 of 2)
« Reply #18 on: Apr 12th, 2007, 2:41pm » |
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By the way, his mother started to read the posts in2005, he had surgery in 2004. So, that means she waited one year after surgery to begin reading. The difference between suffering and being properly diagnosed was about two years. As picky as you seem to be, are you an inspector by trade?
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clusterwife
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Re: Nerve radiosurgery--evaluation (1 of 2)
« Reply #19 on: Apr 12th, 2007, 2:46pm » |
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Gator, why did you have the "block" that was uterly useless to yourself anyway? Didn't you do your homework? That's up there with peppermint oil rubs! Best laugh for me all day! Thanks....Leah.
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Gator
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Re: Nerve radiosurgery--evaluation (1 of 2)
« Reply #20 on: Apr 12th, 2007, 5:02pm » |
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on Apr 12th, 2007, 2:34pm, clusterwife wrote:Gator, apparently Kevin and I weren't together when the headaches started. From the time that he was properly diagnosed to the time heactually started having them is different by many years. You'd have to ask him personally. I'll try to explain the best I know:
2001- started to get weird headaches
2002-started to go to dentist
2003-got diagnosed
2004-had surgery in june
2006-had right sided hit
2007-has hits on both sides
I'm sorry to confuse anyone, all of this hype about dates blows me away. He got the surgery, some days are better than others. He's quiet and grumpy too. He is real, I'm real, and his mother is real. I wish we had the knowledge back then to make an even wiser decision, but kevin was at his wits end and crashing out of control. I wish you could talk to him Gator, he really is a nice guy. Nani and BarbaraD have talked to him, took me forever to get him off Barbara, only to talk to her myself for a long time. I don't have a college degree, I'm still computer challenged. I try to post honestly. Yes, I changed my post a time or two, only to update the info that has changed. I don't want to make you mad, just to explain, in my words, the compassion that I have. I hope you have a painfree day! Leah. |
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on Jul 23rd, 2006, 5:56pm, kevinpix wrote:| i'M A CHRONIC CLUSTERHEAD of 4 years. I'm a male, 36 yrs old. Last year I had trigenial noralsia surgery, excuse my spelling. |
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Damn those pesky dates. Living in your alternative reality, I'm sure you don't understand the importance of using dates to mark important and unforgettable events, like having surgery on your head, but here in this world when a person posts in July of 2006 that he had surgery last year, normal people know that the surgery occurred in 2005.
When a person posts in August of 2006 that they have been reading for approximately a year, we pretty much know they logged in in 2005.
on Aug 2nd, 2006, 10:48am, JoycenSA wrote:I'm a new poster, and I am KevinPix's mom.
I have been a "reader" of the website for approximately a year--in an effort to educate myself and to understand cluster headaches. |
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When a person posts that his mother logged in and read about cluster headaches and then she used that information to diagnose him, people know that that person wasn't diagnosed until after mom logged in.
on Aug 1st, 2006, 3:37pm, kevinpix wrote:| Yea, my doctor first said it was my teeth, I was dumb and had most taken out, only to wear a mouth piece that sucks. I'm 36 with dentures, how about that for sucking? Then they thought I was having migranes, My Mom finally went to this site and diagnosed me with chronic clusters, took the CH test, took the results to him, and the rest is history!! |
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People also have been known to think that when a person has most of his teeth pulled BEFORE surgery, that the right sided pain they feel after surgery probably isn't from a bunch of bad teeth.
on Mar 1st, 2007, 2:56pm, clusterwife wrote:| We thought the headaches on the right side were cluster, ended up being a bunch of bad teeth. |
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Quote:| I'm sorry to confuse anyone, |
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When comparing the posts of Kevin and his mother with what you have posted, it would appear that if anyone is confused, it is you.
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Gator
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Re: Nerve radiosurgery--evaluation (1 of 2)
« Reply #21 on: Apr 12th, 2007, 5:08pm » |
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on Apr 12th, 2007, 2:41pm, clusterwife wrote:| By the way, his mother started to read the posts in2005, he had surgery in 2004. So, that means she waited one year after surgery to begin reading. The difference between suffering and being properly diagnosed was about two years. As picky as you seem to be, are you an inspector by trade? |
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on Aug 2nd, 2006, 10:48am, JoycenSA wrote:I'm a new poster, and I am KevinPix's mom.
I have been a "reader" of the website for approximately a year--in an effort to educate myself and to understand cluster headaches. |
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on Aug 1st, 2006, 3:37pm, kevinpix wrote:| Yea, my doctor first said it was my teeth, I was dumb and had most taken out, only to wear a mouth piece that sucks. I'm 36 with dentures, how about that for sucking? Then they thought I was having migranes, My Mom finally went to this site and diagnosed me with chronic clusters, took the CH test, took the results to him, and the rest is history!! |
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Why would a person have surgery for something that hasn't been diagnosed with?
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Gator
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Re: Nerve radiosurgery--evaluation (1 of 2)
« Reply #22 on: Apr 12th, 2007, 5:13pm » |
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on Apr 12th, 2007, 2:46pm, clusterwife wrote:| Gator, why did you have the "block" that was uterly useless to yourself anyway? Didn't you do your homework? That's up there with peppermint oil rubs! Best laugh for me all day! Thanks....Leah. |
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Am I the only one confused by this one? 
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Kevin_M
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withered branches grow green again.
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Re: Nerve radiosurgery--evaluation (1 of 2)
« Reply #23 on: Apr 12th, 2007, 6:43pm » |
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on Apr 12th, 2007, 2:34pm, clusterwife wrote:| I try to post honestly. Yes, I changed my post a time or two, only to update the info that has changed. |
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But you quickly deleted the information where you contradicted yourself, in an effort to give us only the good view of TN surgery, to dismiss the original post by Bob.
Quote:| I don't want to make you mad, just to explain, in my words, the compassion that I have. I hope you have a painfree day! Leah. |
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Let's see how this compassion reveals itself.
Quote:| Gator, why did you have the "block" that was uterly useless to yourself anyway? Didn't you do your homework? That's up there with peppermint oil rubs! Best laugh for me all day! Thanks....Leah. |
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Linda_Howell
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Re: Nerve radiosurgery--evaluation (1 of 2)
« Reply #24 on: Apr 12th, 2007, 8:12pm » |
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Quote:Am I the only one confused by this one?
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Hell no you're not the only one Mike . This is getting really tiresome. I hate it when someone comes on here for whatever their reason and scams us.
I hate it even worse when they scam or lie to newcomers who are desperate for advice and may believe anything they hear.
It is up to ALL OF US to confront this type of person.
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Kindness, is gladdening the hearts of those who are traveling the dark journey with us.
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