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Topic: HERE IS THE ANSWER TO YOUR PAIN (Read 2747 times) |
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kevinpix
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HERE IS THE ANSWER TO YOUR PAIN
« on: Jul 23rd, 2006, 5:56pm » |
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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. My doctor, Dr. Wayne Hurt, of Houston, Tx., killed all of the nerves on my left side of my face and head. No pain, pills, or the terror filled nights that I was forced to live! I use drops to keep my eye moist. My doctor is a Godsend! He saved my life! He can save yours, too! He spent over 4 hours explaining the procedure to me and my wife. Excellent bedside manner. Cost? About $5,800. Scars? None. I can smile, kiss, eat like before. If you can get used to "pain" you can get used to the numbness far easier. I still get the shadows, but no pain! No Pain, whatsoever! write me and I'll explain more and provide you with info and phone numbers to get you started on your way back to the utter bliss I've been experiencing. Good luck and God bless! kevin.
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| « Last Edit: Jul 23rd, 2006, 11:46pm by kevinpix » |
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Thomas_Martin
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Re: HERE IS THE ANSWER TO YOUR PAIN
« Reply #1 on: Jul 23rd, 2006, 6:42pm » |
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I'm glad that your happy, but those kind of surgeries where they cut/sedate/kill the nerves, haven't they sometimes been proven to work at first and then see the return of the CH.
Also, the sideeffect of loosing your feeling on the affected sid e, is for me to much.
Again happy that it works for you, But I'll skip this threatment and watch out for the future.
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chewy
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Re: HERE IS THE ANSWER TO YOUR PAIN
« Reply #2 on: Jul 23rd, 2006, 6:43pm » |
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Quote:| I'm numb on half my tongue, inside my mouth, my ear, left side of nose, and my left eye. |
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And that was all before the surgery.
What a maroone.
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CHTom
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Re: HERE IS THE ANSWER TO YOUR PAIN
« Reply #3 on: Jul 23rd, 2006, 6:51pm » |
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DBS surgery, available in Germany and Italy, has no side effects and involves the placement of a device on the hypothalamus and is connected to a battery in the chest. The voltage is gradually increased until the pain is gone, in my case it was 5 volts, with no side effects as you've described. The battery has to be changed every 2 years or so, but that can be done in the US. I wish you well, but sorry that you have all of those horrible side effects; I hope that the nerves don't grow back, in which case you will need surgery again and may have permanenent disfiguration of the face.
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vig
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Re: HERE IS THE ANSWER TO YOUR PAIN
« Reply #4 on: Jul 23rd, 2006, 7:14pm » |
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there are better alternatives people.
I know CH sucks, but you don't have to go THAT far to get relief....
Nice to meet you Kevin, hope things stay good for you.
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StressFree
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Re: HERE IS THE ANSWER TO YOUR PAIN
« Reply #5 on: Jul 23rd, 2006, 7:53pm » |
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First try a transcutaneous nerve stimulator. It's cheap and not permanent. TENS, TENS, TENS - Rich
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MorePower
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Re: HERE IS THE ANSWER TO YOUR PAIN
« Reply #6 on: Jul 23rd, 2006, 8:45pm » |
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I guess some of you were not reading....he was CHRONIC.....I would do this surgery. In a heartbeat!!!!
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chewy
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Re: HERE IS THE ANSWER TO YOUR PAIN
« Reply #7 on: Jul 23rd, 2006, 8:52pm » |
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Quote:| I guess some of you were not reading....he was CHRONIC..... |
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I know plenty of chronics.They manage just fine without invasive surgery.
What are you trying to promote? If your chronic you need surgery?
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| « Last Edit: Jul 23rd, 2006, 8:53pm by chewy » |
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Jonny
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Re: HERE IS THE ANSWER TO YOUR PAIN
« Reply #8 on: Jul 23rd, 2006, 9:01pm » |
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on Jul 23rd, 2006, 8:45pm, MorePower wrote:| I guess some of you were not reading....he was CHRONIC.....I would do this surgery. In a heartbeat!!!! |
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I was chronic for 30 years and I would never do it.....Why dont you do this surgery?
All talk?.....LMAO 
I guess so 
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It is up to YOU to educate yourself and then help your doctor plan your treatment. If you just sit down in front of your doctor and say "make me better" you are setting yourself up for a great deal of pain.
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kissmyglass
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Re: HERE IS THE ANSWER TO YOUR PAIN
« Reply #9 on: Jul 23rd, 2006, 9:36pm » |
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Why do TN surgery for Clusters???
Kev
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chewy
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Re: HERE IS THE ANSWER TO YOUR PAIN
« Reply #10 on: Jul 23rd, 2006, 9:54pm » |
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Quote:| Why do TN surgery for Clusters??? |
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Weren't you reading?
Because he was CHRONIC. 
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kissmyglass
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Re: HERE IS THE ANSWER TO YOUR PAIN
« Reply #11 on: Jul 23rd, 2006, 10:05pm » |
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on Jul 23rd, 2006, 9:54pm, chewy wrote:
Weren't you reading?
Because he was CHRONIC. |
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OOOPs missed that....thought he was eposodic.
Kev
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mynm156
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Re: HERE IS THE ANSWER TO YOUR PAIN
« Reply #12 on: Jul 23rd, 2006, 10:54pm » |
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I'm sorry that is a little extreme for me.
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chopmyheadoff
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Re: HERE IS THE ANSWER TO YOUR PAIN
« Reply #13 on: Jul 24th, 2006, 4:15am » |
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come on you've got to be having a laugh
are you for real ?? i cant decide !!
if you are then i do appologise but for me (and i am chronic) that is going way too far.
Iv put up with this pain for 7 years unmedicated brother and i still wouldnt dream of something that made me drool and have a limp face.
my god
fair enough, for an hour a day im in excruciating pain, but for the other 23 hours im glad to be alive - and i would like it to stay that way . .
know what i mean ?
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BarbaraD
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Re: HERE IS THE ANSWER TO YOUR PAIN
« Reply #14 on: Jul 24th, 2006, 6:02am » |
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Well, I've got to jump in here. In 99 I was desperate! I went to Dr. Hurt in Houston (on advice of my neuro who said we'd tried everything available - think he was worried that I'd commit suicide). I thought about it and decided to have it.
I also talked to numerous people who'd had it and it had "worked" for them. I had it -- my odds were good, but I hit the bad end of the odds and it didn't work for me.
so now I live with a numb left side (and some optic damage - another thing Dr. Hurt warned me about).
Over the years I've learned to live with the numbness. If I had it to do over again, I don't know what I'd do. It's a LAST resort, but sometimes when you're desperate - (I was so bad that when Dr. Hurt told me I could die, I calmly asked, "And what's the downside?"
Would I recommend it - not really, but it's an option.
Hugs BD
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chewy
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Re: HERE IS THE ANSWER TO YOUR PAIN
« Reply #15 on: Jul 24th, 2006, 6:34am » |
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Quote:
OOOPs missed that....thought he was eposodic. |
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If that were true then all he would need is peppermint oil.
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Thomas_Martin
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Re: HERE IS THE ANSWER TO YOUR PAIN
« Reply #16 on: Jul 24th, 2006, 7:27am » |
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on Jul 24th, 2006, 6:02am, BarbaraD wrote:Well, I've got to jump in here. In 99 I was desperate! I went to Dr. Hurt in Houston (on advice of my neuro who said we'd tried everything available - think he was worried that I'd commit suicide). I thought about it and decided to have it.
I also talked to numerous people who'd had it and it had "worked" for them. I had it -- my odds were good, but I hit the bad end of the odds and it didn't work for me.
so now I live with a numb left side (and some optic damage - another thing Dr. Hurt warned me about).
Over the years I've learned to live with the numbness. If I had it to do over again, I don't know what I'd do. It's a LAST resort, but sometimes when you're desperate - (I was so bad that when Dr. Hurt told me I could die, I calmly asked, "And what's the downside?"
Would I recommend it - not really, but it's an option.
Hugs BD |
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Always nice to have options. The fact for me is that my CH isn't "severe" enough for me to consider this as a way of dealing with my CH.
The fact that, as far as I know, the nerves can regro and that the surgery has the mentioned sideeffects makes it a last resort that I would use only if my CH intensifies a lot and all else has failed.
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kevinpix
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Re: HERE IS THE ANSWER TO YOUR PAIN
« Reply #17 on: Jul 24th, 2006, 7:57am » |
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The possibilities are endless. I was told: you'd grow out of these later in life. NOT. They got worse for me. I think back, would I do it over again? Heck yes! To be pain free 24 hrs everyday? Oh Yea! How often do you eat food? Maybe 30 minutes total daily? That's when I notice my numbness, notice mind you. Not feel. I "feel" happy, nonregretful, greatful to be alive to type on this keyboard!!! Life is getting better, not worse. Good to talk with you. kev.
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MJ
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Re: HERE IS THE ANSWER TO YOUR PAIN
« Reply #18 on: Jul 24th, 2006, 8:55am » |
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Back in the 80s I was into the 3rd year of one of my cycles getting hits of 10 CH per day allways at the level 10.
I weighed all the odds and had decided to have the surgery. I sure wasnt leading anything resembling a quality of life at the time and as now, no medications were working for me.
Jonny wrote this in another thread
" Imagine having a Kip 10 with every CH that you could not put down"
frankly I dont have to imagine. My cycles still hit like that.
Anyways we had all but scheduled the procedure and my cycle ended at 3 years. Needless to say didnt do it.
If a cycle for me again exceeded 3 years and 1 day and busters wasnt working I dont think I would hesitate for too long about having it done.
Edit to add: I know I would do this before ever going back on the amount of drugs I used back then.
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| « Last Edit: Jul 24th, 2006, 9:04am by MJ » |
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MJ
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JeffB
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Re: HERE IS THE ANSWER TO YOUR PAIN
« Reply #19 on: Jul 24th, 2006, 1:24pm » |
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Hi Kev,
I need a good sales person for my Sacramento office. I bet you could sell beach front property in Wyoming.
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chopmyheadoff
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Re: HERE IS THE ANSWER TO YOUR PAIN
« Reply #20 on: Jul 24th, 2006, 2:50pm » |
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on Jul 24th, 2006, 7:57am, kevinpix wrote:| The possibilities are endless. I was told: you'd grow out of these later in life. NOT. They got worse for me. I think back, would I do it over again? Heck yes! To be pain free 24 hrs everyday? Oh Yea! How often do you eat food? Maybe 30 minutes total daily? That's when I notice my numbness, notice mind you. Not feel. I "feel" happy, nonregretful, greatful to be alive to type on this keyboard!!! Life is getting better, not worse. Good to talk with you. kev. |
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this is commendable brother and i take my hat off to you. No body but you can say if this procedure was worth the side effects.
It obviously is as you are now happy and pain free.
I pray for you that it lasts 
you are braver than most
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CHTom
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Re: HERE IS THE ANSWER TO YOUR PAIN
« Reply #21 on: Jul 24th, 2006, 2:59pm » |
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I recommend DBS as a surgical treatment. No disfigurement, no nerve damage and of the 60 or so peope who have had it, me included, either no more pain or just the occassional hit, easily handled by medication. Too bad that you can only get it done in Italy and Germany and most insurance companies will not pay for most of the cost because it is "experimental", but even if you have to pay, a pain free life is worth it.
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TimJohnson
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Re: HERE IS THE ANSWER TO YOUR PAIN
« Reply #22 on: Jul 24th, 2006, 8:23pm » |
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on Jul 24th, 2006, 1:24pm, JeffB wrote:Hi Kev,
I need a good sales person for my Sacramento office. I bet you could sell beach front property in Wyoming. |
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Its guys like you who take the credibility right away from this board. This is supposed to be a support group. This worked for him. It may not work for you. Invasive procedures work for some people.
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| « Last Edit: Jul 24th, 2006, 8:25pm by TimJohnson » |
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JohnM
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Re: HERE IS THE ANSWER TO YOUR PAIN
« Reply #23 on: Jul 27th, 2006, 3:20pm » |
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Invasive brain/nerve surgery for CH - you must be mad in my opinion to go down this route. CH is not a killer disease (although it may seem so for many). Surgery like this is only for life threatening stuff IMO. I suppose maybe if you are suicidal then ........
Sorry for not being supportive here 
I am not chronic thankfully, but if I was I still wouldn't do it.
My neuro told me of the nerve cutting option more than 10 years ago, and then said he would not recommend it even as a last resort because it was too hit and miss and that you could spend the rest of your life with a numb face, ruined eyesight, and still not be cured.
I have my own method to deal with CH and it no longer involves drugs (or surgery) and I have been CH free since 2003. My postings on my method have mostly met with derision here, so I am not going to repeat them now.
Suffice to say, there are plenty of other options to try before you go down the high risk route.
John
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thomas
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Re: HERE IS THE ANSWER TO YOUR PAIN
« Reply #24 on: Jul 27th, 2006, 3:29pm » |
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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. My doctor, Dr. Wayne Hurt, of Houston, Tx., killed all of the nerves on my left side of my face and head. No pain, pills, or the terror filled nights that I was forced to live! I use drops to keep my eye moist. My doctor is a Godsend! He saved my life! He can save yours, too! He spent over 4 hours explaining the procedure to me and my wife. Excellent bedside manner. Cost? About $5,800. Scars? None. I can smile, kiss, eat like before. If you can get used to "pain" you can get used to the numbness far easier. I still get the shadows, but no pain! No Pain, whatsoever! write me and I'll explain more and provide you with info and phone numbers to get you started on your way back to the utter bliss I've been experiencing. Good luck and God bless! kevin. |
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Glad it worked for you, I was consulted by a neuro surgeon about this procedure about 6 years ago, during a very rough cycle, and he told me it only has a 50% sucess ratio. I decided it wasn't worth the trouble for myself. But glad it's working, I'll keep my fingers crossed for you.
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Religion and sex are powerplays. Manipulate the people for the money they pay. Selling skin, selling God, the numbers look the same on their credit cards. Triptans cause rebounds. Learn it, believe it, live it. I use triptans as the absolute LAST RESORT when treating my CH.
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