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        Cluster Headache Help and Support >> Cluster Headache Specific >> HERE IS THE ANSWER TO YOUR PAIN
        
(Message started by: kevinpix on Jul 23rd, 2006, 5:56pm)
Title: HERE IS THE ANSWER TO YOUR PAIN
Post by kevinpix on Jul 23rd, 2006, 5:56pm
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.
Title: Re: HERE IS THE ANSWER TO YOUR PAIN
Post by Thomas_Martin on Jul 23rd, 2006, 6:42pm
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.
Title: Re: HERE IS THE ANSWER TO YOUR PAIN
Post by chewy on Jul 23rd, 2006, 6:43pm

Quote:
I'm numb on half my tongue, inside my mouth, my ear, left side of nose, and my left eye.


And that was all before the surgery.

What a maroone.
Title: Re: HERE IS THE ANSWER TO YOUR PAIN
Post by CHTom on Jul 23rd, 2006, 6:51pm
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.
Title: Re: HERE IS THE ANSWER TO YOUR PAIN
Post by vig on Jul 23rd, 2006, 7:14pm
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.
Title: Re: HERE IS THE ANSWER TO YOUR PAIN
Post by StressFree on Jul 23rd, 2006, 7:53pm
First try a transcutaneous nerve stimulator. It's cheap and not permanent. TENS, TENS, TENS  -  Rich
Title: Re: HERE IS THE ANSWER TO YOUR PAIN
Post by MorePower on Jul 23rd, 2006, 8:45pm
I guess some of you were not reading....he was CHRONIC.....I would do this surgery. In a heartbeat!!!!
Title: Re: HERE IS THE ANSWER TO YOUR PAIN
Post by chewy on Jul 23rd, 2006, 8:52pm

Quote:
I guess some of you were not reading....he was CHRONIC.....


I know plenty of chronics.They manage just fine without invasive surgery.

What are you trying to promote? If your chronic you need surgery?
Title: Re: HERE IS THE ANSWER TO YOUR PAIN
Post by Jonny on Jul 23rd, 2006, 9:01pm

on 07/23/06 at 20:45:12, MorePower wrote:
I guess some of you were not reading....he was CHRONIC.....I would do this surgery. In a heartbeat!!!!


I was chronic for 30 years and I would never do it.....Why dont you do this surgery?

All talk?.....LMAO ;;D

I guess so  ::)
Title: Re: HERE IS THE ANSWER TO YOUR PAIN
Post by kissmyglass on Jul 23rd, 2006, 9:36pm
Why do TN surgery for Clusters???   ::)


Kev
Title: Re: HERE IS THE ANSWER TO YOUR PAIN
Post by chewy on Jul 23rd, 2006, 9:54pm

Quote:
Why do TN surgery for Clusters???


Weren't you reading?

Because he was CHRONIC.  8)
Title: Re: HERE IS THE ANSWER TO YOUR PAIN
Post by kissmyglass on Jul 23rd, 2006, 10:05pm

on 07/23/06 at 21:54:12, chewy wrote:
Weren't you reading?

Because he was CHRONIC.  8)


OOOPs  missed that....thought he was eposodic.

Kev
Title: Re: HERE IS THE ANSWER TO YOUR PAIN
Post by mynm156 on Jul 23rd, 2006, 10:54pm
I'm sorry that is a little extreme for me.
Title: Re: HERE IS THE ANSWER TO YOUR PAIN
Post by chopmyheadoff on Jul 24th, 2006, 4:15am
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 ?
Title: Re: HERE IS THE ANSWER TO YOUR PAIN
Post by BarbaraD on Jul 24th, 2006, 6:02am
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
Title: Re: HERE IS THE ANSWER TO YOUR PAIN
Post by chewy on Jul 24th, 2006, 6:34am

Quote:
OOOPs  missed that....thought he was eposodic.  


If that were true then all he would need is peppermint oil.  8)
Title: Re: HERE IS THE ANSWER TO YOUR PAIN
Post by Thomas_Martin on Jul 24th, 2006, 7:27am

on 07/24/06 at 06:02:15, 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


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.
Title: Re: HERE IS THE ANSWER TO YOUR PAIN
Post by kevinpix on Jul 24th, 2006, 7:57am
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.
Title: Re: HERE IS THE ANSWER TO YOUR PAIN
Post by MJ on Jul 24th, 2006, 8:55am
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.
Title: Re: HERE IS THE ANSWER TO YOUR PAIN
Post by JeffB on Jul 24th, 2006, 1:24pm
Hi Kev,
I need a good sales person for my Sacramento office. I bet you could sell beach front property in Wyoming.
Title: Re: HERE IS THE ANSWER TO YOUR PAIN
Post by chopmyheadoff on Jul 24th, 2006, 2:50pm

on 07/24/06 at 07:57:00, 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.


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
Title: Re: HERE IS THE ANSWER TO YOUR PAIN
Post by CHTom on Jul 24th, 2006, 2:59pm
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.
Title: Re: HERE IS THE ANSWER TO YOUR PAIN
Post by TimJohnson on Jul 24th, 2006, 8:23pm

on 07/24/06 at 13:24:58, JeffB wrote:
Hi Kev,
I need a good sales person for my Sacramento office. I bet you could sell beach front property in Wyoming.



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.
Title: Re: HERE IS THE ANSWER TO YOUR PAIN
Post by jmorgan52 on Jul 27th, 2006, 3:20pm
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
Title: Re: HERE IS THE ANSWER TO YOUR PAIN
Post by thomas on Jul 27th, 2006, 3:29pm

on 07/23/06 at 17:56:14, 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.



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.
Title: Re: HERE IS THE ANSWER TO YOUR PAIN
Post by kevinpix on Jul 27th, 2006, 4:10pm
Basically, I was at the end of my rope.  Tried every opt- ion I had available.  Even going to emergency couldn't break cycle.  Not an excuse, but my family was worried and sought out a "cure".  I've never been on a computer before last week.  I tried acupuncture, electric shocks, oxygen, a zillion drug concoctions to no avail.  For me, surgery was MY last hope.  I was getting 4-6 attacks daily, each lasting atleast 3 hours.  I have a family of my own, and I think that I owe them the most I can give.  I didn't want to live the best yrs. of my life screaming in the floor and crying.  I want to help my fellow brothers and sisters, and to make you feel hopeful and encouraged.  Thanks for letting me share.
Title: Re: HERE IS THE ANSWER TO YOUR PAIN
Post by seasonalboomer on Jul 27th, 2006, 4:26pm
Kevin, this is a serious question. I find that even when I've had novacaine for dental work that ends up making it to my tongue that for my own protection I better not eat or I'm going to lose pieces of tongue when I chew (and it's not like I'm Gene Simmons from KISS or something). Do you run into problems with that?

Scott
Title: Re: HERE IS THE ANSWER TO YOUR PAIN
Post by hwm54112 on Jul 27th, 2006, 4:54pm
In 1987, I had what I guess was a similar, then experimental procedure-a radiofrequency trigeminal neuralgia in which only the nerves where the cluster pain was experienced, were destroyed, not the entire left side. It took a while to find someone willing to try it, but it worked for approximately 6 years before the nerves grew back. I suffered no ill effects, no paralysis. The risk of facial paralysis was there but not intentional. The surgery was attempted again in 93 but the canal leading to the base of the brain had closed. Since then, Trex has made it livable. If I had a choice between all the drugs and the surgery, I’d take the surgery.

It was a tough choice Kevin. I remember what it was like for my family too. Good luck  
Title: Re: HERE IS THE ANSWER TO YOUR PAIN
Post by BarbaraD on Jul 27th, 2006, 6:36pm
SeasonalB...

At first there's a little problem eating (I wouldn't go out in public for a while), but after a time, you get used to it (it really doesn't feel like the novicane - can't explain it, but it's different). I don't eat on the left side even now. But never bit my tongue like after the dentist.

But there's really no disfigurment that anyone can tell. I know I'm numb, but no one looking at me can tell.

I use a tens machine (or it's something like that) to stimulate that side (my neuro prescribed it and I've used it for years). I don't know if the nerve will grow back (it was microwaved) or not, but over the years I've learned to live with it and it really doesn't bother me that much.

Dr. Hurt was around and practiced with Dr. Sweet, the one who invented this procedure at Mass. Gen. He's done over 1000 (that was in 99) and will not touch a patient unless everything else has been tried. He spent four hours interviewing me before he told me he'd do it.

We all handle pain differently. Mine had gotten so bad I could NOT have gone on much longer. I had about a month pain free before they hit back - that was the most I'd been pf in years. Later I found topamax and lo and behold - it worked, but that was later.

I wouldn't encourage anyone to have this procedure, but I wouldn't discourage them either. And if they're gonna have it done, I'd definitely recommend Dr. Wayne Hurt in Houston. The man actually "cares" about his patients. A couple of months ago I had a call from his son (who's in with him now) asking how I was doing. I was so shocked I could barely talk to him.

I'm glad for Kevin and hope the rest of you support him. When I had mine done, I got nothing but support from this board and will always be grateful to those who did support me.

Hugs BD
Title: Re: HERE IS THE ANSWER TO YOUR PAIN
Post by Charlotte on Jul 27th, 2006, 6:38pm
funny about names.  BD mentions Dr Hurt & Dr Sweet.  Two of my best Drs were Dr. Bratt & Dr. Kidd.

Charlotte
Title: Re: HERE IS THE ANSWER TO YOUR PAIN
Post by CHTom on Jul 27th, 2006, 9:46pm

on 07/27/06 at 15:20:00, jmorgan52 wrote:
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


Just to keep the record straight, DBS is not invasive surgery; a device is attached to the hypothalamus (thousands of these operations have been done for people suffering from Parkinson' s Disease, with excellent results.  For chronic CH, the device is just ATTACHED to a different part of the hypothalamus on the surface and can easily be removed-it is not invasive, not placed inside the brain).  You wrote that you are not chronic, John-although I would not get the operation that our friend Kevin did, after several years of being chronic a gun pointed at your brain begins to look good, so getting "invasive" surgery is not such a bad choice.  I hope that you never have to walk in the shoes of a chronic CH person-if you ever do, you will really know what suffering is about and why chronic CH is known as a "suicide headache".
Title: Re: HERE IS THE ANSWER TO YOUR PAIN
Post by Gator on Jul 29th, 2006, 10:28am

on 07/27/06 at 21:46:23, CHTom wrote:
Just to keep the record straight, DBS is not invasive surgery; a device is attached to the hypothalamus (thousands of these operations have been done for people suffering from Parkinson' s Disease, with excellent results.  For chronic CH, the device is just ATTACHED to a different part of the hypothalamus on the surface and can easily be removed-it is not invasive, not placed inside the brain).  You wrote that you are not chronic, John-although I would not get the operation that our friend Kevin did, after several years of being chronic a gun pointed at your brain begins to look good, so getting "invasive" surgery is not such a bad choice.  I hope that you never have to walk in the shoes of a chronic CH person-if you ever do, you will really know what suffering is about and why chronic CH is known as a "suicide headache".



Normally I just ignore your posts.  I suppose I should ignore this one, but for whatever reason, I can't.

DBS is not invasive?  WTF is your definition of invasive? How do you think they "ATTACH" the leads to the hypothalamus?  They drill a burr hole in the top of your skull (two if done bilaterally) and insert electrical leads down through the brain and attach them to the hypothalamus.  What part of that is not invasive?  And there are complications including intracranial hemorrhage, infection, seizures, headache and death.  Also, the electrodes can be placed too close to other brain regions, which can lead to visual defects, speech problems, and other complications.

While DBS is one of the few surgeries I might consider once the docs get more data on efficacy and side effects, not to mention a LOT more pratice under their belts, it is still nothing I would do right now and I'm chronic with about five hits per day.

And one more thing - don't belittle someone else's pain like that.  You don't know what they go through in cycle.  Their pain is just as intense as any chronic's and in the worst part of a cycle, many episodics have thoughts of suicide as well.  That and they live with the "Sword of Damocles" hanging over their heads when not in cycle.  Worrying at every little twinge that they might be starting a new cycle.  At least as a chronic I know that at certain times of the day I am going to get hit and am prepared for it.  It's just another part of my daily routine, though one I'd gladly give up.

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.


Edited to get rid of the double quote.
Title: Re: HERE IS THE ANSWER TO YOUR PAIN
Post by chewy on Jul 29th, 2006, 11:36am

Quote:
My neuro told me of the nerve cutting option more than 10 years ago,


Most of us could not even get a correct diagnosis 10 years ago yet you found the Doc that not only diagnosed CH but suggested invasive surgery to correct it?

Anyone reading CHToms posts should know that he has not been believable here from day1 and should exercise extreme caution when considering any of his suggestions.
Title: Re: HERE IS THE ANSWER TO YOUR PAIN
Post by wildhaus on Jul 29th, 2006, 3:15pm
Hi

I don’t know, and to be honest, don’t want to find out how it is to be a chronic…..
but being in and out of cycle without knowing when the next “dance” with the beast will be is not simple, and is a very grinding situation, especially for newbie’s like me…..
but we (episodic) do have the brakes…… big brakes!

To the surgical alternative…..  well I am very happy it did work for you….. and if I were in your situation, I would have looked at it, and gave it a deeper thought, more than I did give it as an episodic….  
My doctors did mention the alternative….. and when I was told the rate of success….
50% I just looked at them…. and said I would rather use a gun…. and play Russian roulette…
with 50% success and all the said effects that come with it in any case….. I have to say
you are a gambler….. that got lucky…..  and gambling with my life….. oh well, each one and his forté…
And before going under the “knife” I would explore less radical and irreversible alternatives
In my case The GLOA therapy…. and the Stellatum blockade….  as aggressive as this alternatives are, they are still not irreversible, and if not efficient try another…..
and I would definitely not run all over and try to tell other people how good it is…. when
you know it can go the other way too! and not just 1 out of 10 but more like 50%.... and raise hopes in CH and I would dare to say FALSE HOPES…..   or lay the whole information openly…… and just promote like a sales man….. Sorry but I feel its wrong!
and yet agaain: I am very happy for you……

Michael
Title: Re: HERE IS THE ANSWER TO YOUR PAIN
Post by Pinkfloyd on Jul 29th, 2006, 5:45pm
http://i23.photobucket.com/albums/b392/psiloscribe/weighyouroptions2.jpg

Get 2nd and 3rd opinions

http://i23.photobucket.com/albums/b392/psiloscribe/doctor_doug.jpg

No one should be faulted for their decisions. Check out your options and all the available information.

BTW, my Grandfather had his trigeminal nerve severed some 75 years ago, so surgical options have been around a long time for cluster sufferers. But, you don't get much more invasive, than DBS.

http://i23.photobucket.com/albums/b392/psiloscribe/deep20brain20stimulation.jpg

http://i23.photobucket.com/albums/b392/psiloscribe/man_pacemaker.jpg

Bobw
Title: Re: HERE IS THE ANSWER TO YOUR PAIN
Post by kissmyglass on Jul 29th, 2006, 9:34pm

on 07/27/06 at 21:46:23, CHTom wrote:
Just to keep the record straight, DBS is not invasive surgery; a device is attached to the hypothalamus (thousands of these operations have been done for people suffering from Parkinson' s Disease, with excellent results.  For chronic CH, the device is just ATTACHED to a different part of the hypothalamus on the surface and can easily be removed-it is not invasive, not placed inside the brain).".

LMAO.....Are you kidding me/ us? Every word of the above post is total bullshit.  ::)

Kev
Title: Re: HERE IS THE ANSWER TO YOUR PAIN
Post by kissmyglass on Jul 29th, 2006, 9:37pm
ooops, except for the parkinsons part, it also works very well for  a lot of Tourettes people.

Kev
Title: Re: HERE IS THE ANSWER TO YOUR PAIN
Post by chewy on Jul 30th, 2006, 9:37am
kevinpix

What are you going to do if the CH switches sides?
Title: Re: HERE IS THE ANSWER TO YOUR PAIN
Post by unsolved1 on Jul 30th, 2006, 2:19pm
The title of the thread is BS ! No one has the answer to solve all our pain. What works for some is not going to work for all. And that which works for some, may be only a temporary fix. I agree that the DBS is an invasive procedure. So is cutting nerves. None of it is proven effective yet. The complications could be devestating. I guess if you're near suicide, you'll try anything though. To those that are in this position, I wish you all the luck in the world.

For me, I was episodic for 12 years and now chronic for nearly 6 years. Through trial and error, I've found drugs that can temporarly help, giving me just the 'break' that I need to rest, rejuvinate, and resume the fight against the beast. I prefer this method (at this time) over anymore surgeries or experimental methods. I do what I have to do to survive and try to lead as normal of a life as I can. I guess that's what we're all trying to do.

Goodluck

UNsolved
Title: Re: HERE IS THE ANSWER TO YOUR PAIN
Post by Gena on Jul 30th, 2006, 7:44pm

on 07/27/06 at 21:46:23, CHTom wrote:
Just to keep the record straight, DBS is not invasive surgery; a device is attached to the hypothalamus (thousands of these operations have been done for people suffering from Parkinson' s Disease, with excellent results.  For chronic CH, the device is just ATTACHED to a different part of the hypothalamus on the surface and can easily be removed-it is not invasive, not placed inside the brain).  You wrote that you are not chronic, John-although I would not get the operation that our friend Kevin did, after several years of being chronic a gun pointed at your brain begins to look good, so getting "invasive" surgery is not such a bad choice.  I hope that you never have to walk in the shoes of a chronic CH person-if you ever do, you will really know what suffering is about and why chronic CH is known as a "suicide headache".



You show your stupidity yet again.  The hypothalamus is the deepest and oldest part of the brain, you can't attach any thing to it, without going through the rest of the brain, but I guess maybe in your case it wouldn't be that invasive.

Edit to add that this is Thomas, not Gena.
Title: Re: HERE IS THE ANSWER TO YOUR PAIN
Post by quietbliss on Jul 31st, 2006, 12:04am
My Dad has suffered from CH for over 30 years.  He had TG surgery to numb his left side about 25 years ago and it was truly a godsend until about 10 or 15 years ago when he started having headaches on the right side.

I think if you were to ask my Dad he would tell you the surgery was definitely worth the 10-15 pain free years he had.

Having said that, a surgery of this nature is a PERSONAL decision.  It's one thing to have a personal opinion about the procedure, but none of us have the right to pass judgement on those who elect to exercise this option.

If you're considering this avenue research it thoroughly and make your own informed decision.
Title: Re: HERE IS THE ANSWER TO YOUR PAIN
Post by CHTom on Jul 31st, 2006, 1:14am

on 07/30/06 at 19:44:26, Gena wrote:
You show your stupidity yet again.  The hypothalamus is the deepest and oldest part of the brain, you can't attach any thing to it, without going through the rest of the brain, but I guess maybe in your case it wouldn't be that invasive.

Edit to add that this is Thomas, not Gena.


Maybe in your brain the hypothalamus is the deepest and oldest part of the brain, but for the rest of humanity, the medula oblangata is the oldest and deepest  part of the brain; the hypothalamus is on the top of the brain.  Maybe you should take a biology course or get your brain rearranged :P
Title: Re: HERE IS THE ANSWER TO YOUR PAIN
Post by Mrs Deej on Jul 31st, 2006, 1:38am

on 07/31/06 at 00:04:02, quietbliss wrote:
My Dad has suffered from CH for over 30 years.  He had TG surgery to numb his left side about 25 years ago and it was truly a godsend until about 10 or 15 years ago when he started having headaches on the right side.

I think if you were to ask my Dad he would tell you the surgery was definitely worth the 10-15 pain free years he had.

Having said that, a surgery of this nature is a PERSONAL decision.  It's one thing to have a personal opinion about the procedure, but none of us have the right to pass judgement on those who elect to exercise this option.

If you're considering this avenue research it thoroughly and make your own informed decision.

Excellent first post.  I'm sorry you had to find us, however, I'm glad you are here finding support and information.  I'm sorry your father has yet again, started having clusters.

If you need anything, this place is filled with wonderful people and good information, don't hesitate to ask.

[smiley=hug.gif]
Steph
Title: Re: HERE IS THE ANSWER TO YOUR PAIN
Post by chopmyheadoff on Jul 31st, 2006, 2:55am
How come all u peeps giving CHTom a hard time ??

whats he done ??
have i missed something  [smiley=huh.gif]
Title: Re: HERE IS THE ANSWER TO YOUR PAIN
Post by LeLimey on Jul 31st, 2006, 5:05am
Chop you haven't seen CHTom's other posts obviously, either under this name or any other. His most recent alter ego was Berbank, immediately banned, and I can name 6 or 7 other incarnations where he was equally offensive, obstructive and ignorant.
He is what we call a troll, he comes here purely to cause dissent and misinformation.
Title: Re: HERE IS THE ANSWER TO YOUR PAIN
Post by wildhaus on Jul 31st, 2006, 6:49am
Just for you CHTom.....
http://upload.wikimedia.org/wikipedia/en/9/9f/LocationOfHypothalamus.jpg

The hypothalamus is the deepest ( look at the pic.)  or what would be the one you think is......the deeper....



And a good link for you to go to.... might help you....

http://arbl.cvmbs.colostate.edu/hbooks/pathphys/endocrine/hypopit/anatomy.html


do go to it..... but Pls. do not answer or post right away......

take some time.....

use your head..... think.... and then think agin.....
and then try it one more time..... and only then
if you have something to post do it..... but befor hittin Post do Preview it........  

Michael
Title: Re: HERE IS THE ANSWER TO YOUR PAIN
Post by thomas on Jul 31st, 2006, 8:13am

on 07/31/06 at 01:14:26, CHTom wrote:
Maybe in your brain the hypothalamus is the deepest and oldest part of the brain, but for the rest of humanity, the medula oblangata is the oldest and deepest  part of the brain; the hypothalamus is on the top of the brain.  Maybe you should take a biology course or get your brain rearranged :P


Maybe you should take your own advice.  You are a fucking moron, and a danger to anyone who reads your posts.  You shouldn't talk about things that you don't know a damn thing about.  Your stupidity amazes me.
Title: Re: HERE IS THE ANSWER TO YOUR PAIN
Post by thomas on Jul 31st, 2006, 8:15am

on 07/31/06 at 02:55:30, chopmyheadoff wrote:
How come all u peeps giving CHTom a hard time ??

whats he done ??
have i missed something  [smiley=huh.gif]

For some one to post about a subject that they have no knowledge of, is a danger.  That's why I am giving him a hard time.  Ignorance coupled with arrogance is one of the worst combinations in the medical world.  
Title: Re: HERE IS THE ANSWER TO YOUR PAIN
Post by jmorgan52 on Jul 31st, 2006, 9:45am

on 07/29/06 at 11:36:00, chewy wrote:
My neuro told me of the nerve cutting option more than 10 years ago, ....

this is a Quote by JMorgan52 - not CHTom
------------------------------------------------------------------------
Most of us could not even get a correct diagnosis 10 years ago yet you found the Doc that not only diagnosed CH but suggested invasive surgery to correct it?

Anyone reading CHToms posts should know that he has not been believable here from day1 and should exercise extreme caution when considering any of his suggestions.


Chewy you have your quotes/facts all wrong and only quoted part of the sentence I wrote.

And I posted the following statement, not CHTom:

"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."

And if your read it properly, you will see that my Neuro did not recommend or suggest the surgery, he merely mentioned that this was an option!

I also have to take issue with CHTom though and am not sure what planet he is from if he thinks attaching electodes to the brain is non-invasive. Perhaps in his case it is not?

John
Title: Re: HERE IS THE ANSWER TO YOUR PAIN
Post by chewy on Jul 31st, 2006, 10:21am
Sorry. Get em mixed up.
Title: Re: HERE IS THE ANSWER TO YOUR PAIN
Post by thomas on Jul 31st, 2006, 10:55am

on 07/31/06 at 10:21:08, chewy wrote:
Sorry. Get em mixed up.

Confusing him with CHTom deserves a much bigger apology in my book.  ;)
Title: Re: HERE IS THE ANSWER TO YOUR PAIN
Post by kcopelin on Jul 31st, 2006, 11:06am
The reason for the defensiveness regarding the subject of your thread-so many of us have tried so many things that work then don't work and this is an on-going battle for most of us (with possible exception of clusterbusters who seem to be having pretty darned good success)
so any thread that states the poster has found a "cure", an "answer" or a brand new "treatment" is going to be met with scepticism.  
Honey, some us us have been known to use bleu cheese  and vinegar  ::)-but at least that doesn't involve surgery-listen
I'm glad it worked for you, really, and I pray that it continues to work.  
PFDAN y'all,
kathy

P.S. CHTom, you never cease to amaze me.  Your posts would be laughable except there maybe newbies here who don't know any better yet, or who think we are unfairly picking on you.  
Title: Re: HERE IS THE ANSWER TO YOUR PAIN
Post by thomas on Jul 31st, 2006, 11:08am

on 07/31/06 at 11:06:31, kcopelin wrote:
P.S. CHTom, you never cease to amaze me.  Your posts would be laughable except there maybe newbies here who don't know any better yet, or who think we are unfairly picking on you.  


It almost seems to me, the guy is trying to get some one killed.
Title: Re: HERE IS THE ANSWER TO YOUR PAIN
Post by kcopelin on Jul 31st, 2006, 11:13am
that too...
and apparently the adage "just ignore him and he will go away" doesn't work in this case.  So, to all who are still unaware of this fact, CHTom is a dispenser of VERY BAD INFO.  Please do not act on anything he says without careful research.  We are not a bunch of bullies picking on poor old CHTom, he is a dangerous dude.
kathy
Title: Re: HERE IS THE ANSWER TO YOUR PAIN
Post by DJ on Jul 31st, 2006, 10:17pm

on 07/27/06 at 21:46:23, CHTom wrote:
Just to keep the record straight, DBS is not invasive surgery; a device is attached to the hypothalamus (thousands of these operations have been done for people suffering from Parkinson' s Disease, with excellent results.  For chronic CH, the device is just ATTACHED to a different part of the hypothalamus on the surface and can easily be removed-it is not invasive, not placed inside the brain).


on 07/31/06 at 01:14:26, CHTom wrote:
...the hypothalamus is on the top of the brain.

So I've been reading up on this thread and I would agree... ANY surgical procedure to correct (or try to correct) cluster headaches (or any other ailment for that matter) should be COMPLETELY an informed personal decision.

If someone makes an informed decision to undergo a procedure to cut the nerves on one side of their face to try and rid themselves of something that is destroying their personal and family lives, more power to them!

The most important part of making that decision is the person needs to do their research and be informed enough to understand the research shows the procedure only works 50% of the time for cluster headache patients.  If they are willing to accept those odds, God bless them, and good luck!

What worries me most about this thread is the posting of VERY BAD INFORMATION.

It doesn't make any difference who the person is, I believe it is everyone's responsibilty to point out anything that is blantantly WRONG information. This time it was CHTom... next time it could be me, or any one of us!

I believe it is our job as a community to post accurate information for the people who do come to this site to research options for their treatment.

With that being said, here is what I've found on the web regarding deep brain stimulation (DBS):

From the Mayo Clinic (http://www.mayoclinic.com/health/deep-brain-stimulation/MH00114):

"Deep brain stimulation requires two surgical procedures — surgery on your brain to implant electrodes and surgery on your chest to implant a neurostimulator device."

"In general, here's how surgery for deep brain stimulation works. For the brain surgery portion, you're given local anesthetics to numb the area being operated on. You remain awake and alert, however, so that the surgeon can talk to you to make sure the proper areas of your brain are being stimulated. Your head is placed in a special frame to keep it still during surgery. Two holes are drilled in your skull. Guided by imaging techniques, the surgeon implants electrodes on both sides of your brain.

During the second portion of surgery, the surgeon implants the neurostimulator in your chest. Wires from the brain electrodes are placed under your skin and guided down to the battery-operated neurostimulator. The neurostimulator sends electrical signals along the wires to the electrodes, stimulating the brain.

The neurostimulator can be easily programmed from outside your body. Dosage of the electrical impulses is customized to the individual. Stimulation is generally continuous, 24 hours a day."

And from Wikipedia (http://en.wikipedia.org/wiki/Deep_brain_stimulation):

"Deep brain stimulation (DBS) is one of a group of treatments involving surgical implantation of a medical device called a brain pacemaker"

"The surgery involves craniotomy for implantation of an electrode into the subthalamic nucleus or basal ganglia of the brain."

"DBS has been applied to the treatment of Parkinson's disease, Clinical depression, Tourette syndrome, obsessive-compulsive disorders, cluster headaches, and obesity."

Here are a couple of pics from the Wikipedia article.  Looks pretty invasive to me!!

http://www.clusterheadaches.com/DBS1.gif
http://www.clusterheadaches.com/DBS2.jpg

I'm out...

DJ
Title: Re: HERE IS THE ANSWER TO YOUR PAIN
Post by Sean_C on Jul 31st, 2006, 11:07pm

on 07/31/06 at 22:17:00, DJ wrote:
If someone makes an informed decision to undergo a procedure to cut the nerves on one side of their face to try and rid themselves of something that is destroying their personal and family lives, more power to them!


I don't understand why people think DBS is such a bad thing, its an option the individual has to make for themselves. I would think the desperation levels were pretty high for anybody that chose this option in the first place. I'm sure the docs have an even higher criteria for anyone to even qualify for this surgery. No newbs gonna be able to walk into a docs office and say I want DBS, and if he does and can, then thiers something wrong with that doc. I would think all options have to be exhausted first. JMHO

OK, I'm done kissin your asss now Deej, can I go home now ;;D

Cheers [smiley=me&mb.gif]

Sean.................................................
Title: Re: HERE IS THE ANSWER TO YOUR PAIN
Post by Pinkfloyd on Aug 1st, 2006, 1:43am

on 07/31/06 at 23:07:46, Sean_C wrote:
I don't understand why people think DBS is such a bad thing, Sean.................................................


The problem isn't with DBS or people that choose that route. As DJ and others have said...if people make an informed decision, then all the best with it. Hopefully they've exhausted all other less invasive and permanent options first. Some don't know all the options out there. If they see a neurosurgeon right after having their first MD give up on them after a cycle, they may have only investigated a few options. Any doctor (or most anyway) is going to offer what THEY do as the best route. That's why people have teeth pulled at a dentist, new glasses after going to an optomologist or a spine adjustment from a chiropractor. That's what they do. That's what they know.

The big problem in this thread is CHTom...all I can say is wow.  :o

Here is a guy that "says" he had the operation but knows so little about it.
What about the words DEEP BRAIN STIMULATION doesn't compute?

I see a few possibilities here.
Either he : did have the operation and had no idea what he was getting into...NONE. So here would be a man giving advice that was willing to have serious open brain surgery, with NO idea of what was involved. Is this someone that should be giving advice and trying to tell people how wonderful this treatment is? Without his knowing any of the side effects, let alone any of the details. That's like taking advice on which semi-automatic weapon to buy, from a Tibetan monk.

Or he: didn't have the operation and is giving advice based on lies, about something he knows nothing about. A very dangerous practice on a public message board read by people that some of which may find themselves reading during very stressful and seemingly hopeless times.
I don't think it would be a good idea for someone new here, and in the middle of their first very distressing cycle, to find themselves in a thread extolling the virtues of DBS, and running off to a neurosurgeon after only having been seen by their dentist and their chiropractor.

Or he: (he being CHTom) suffers from Maunchausen by Internet and doesn't have clusters and hasn't had DBS and is building his fake health history. Not only "suffers" from clusters but has gone through even the most invasive of treatments and still has cluster pain (hence still needs narcotics). This isn't too likely since most Maunchausen people do much more research on their chosen disease than Tom has, but maybe he's new at it.

Bobw
(no, I don't believe he is a troll. I believe his reasons for being, are much more dangerous and egregious)
Title: Re: HERE IS THE ANSWER TO YOUR PAIN
Post by wildhaus on Aug 1st, 2006, 6:48am
By now I think this thread had taken too much of bored space…. or better said wasted board
Space……  I would like to put this on the IGNOR button!   this "exchange of knowledge"
gets us nowhere…..
for the those who are  interested in any kind of surgery….. you should look it up on the net or just ask your neurologist or on a new thread….
and for the one (or more) feeding “US” with wrong information…..   oh well we just have to try and learn how to weed this type of information out!  
to the one (or more) pretending to know it all…..  and on top of it to recommend things they have no idea about….  and with recommendation that might get one to get to the wrong conclusions… or even get hurt…..    Before posting…. do think…..  this bored is for “US” to share information and knowledge….. for help…..!   and if you cannot think…… just maybe go away and let us deal with our agony without you adding to it!
PLEAS!!!!
>:(
Title: Re: HERE IS THE ANSWER TO YOUR PAIN
Post by chewy on Aug 1st, 2006, 7:14am
A trolls work is never done. Except this time CHToms troll post has a positive result. Not the outcome desired nor projected by trolls . Sorry CHTom.

Your statement regarding DBS being "non-invasive" and the hypothalmus being on "top" of the brain got people doing homework and becoming informed. OOOPPPS!


Quote:
only works 50% of the time for cluster headache


Those are not great odds considering the risk and resulting side effects but that would be my decision to make along with my neuro. Period.

My problem with the original post, as well as the DBS, is is that they are presented as a simplistic cure all.

Obviously they are not that.

Hell. I'd even try methods to remove body toxins first. 8)
Title: Re: HERE IS THE ANSWER TO YOUR PAIN
Post by jmorgan52 on Aug 2nd, 2006, 4:14am

on 08/01/06 at 07:14:47, chewy wrote:
Hell. I'd even try methods to remove body toxins first. 8)


You would do well to try this Chewy. It might even give your irritating attitude a postive adjustment
Title: Re: HERE IS THE ANSWER TO YOUR PAIN
Post by chopmyheadoff on Aug 2nd, 2006, 6:49am
better go get my fireproof clothes

its flame city in here  :-/
Title: Re: HERE IS THE ANSWER TO YOUR PAIN
Post by chewy on Aug 2nd, 2006, 7:39am

Quote:
It might even give your irritating attitude a postive adjustment


Not looking for one thanks.
Title: Re: HERE IS THE ANSWER TO YOUR PAIN
Post by thomas on Aug 2nd, 2006, 10:06am

on 08/02/06 at 06:49:57, chopmyheadoff wrote:
better go get my fireproof clothes

its flame city in here  :-/


Not really, just trying to protect people from DANGEROUS misinformation, that's all.
Title: Re: HERE IS THE ANSWER TO YOUR PAIN
Post by JoycenSA on Aug 2nd, 2006, 10:48am
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.

I certainly would not give medical advice to anyone: but Kevin's decision  to have the surgery by Dr. Hurt was a godsend to our family.

I can not express the fear, and complete helplessness I would feel when I would receive his telephone calls in the middle of the night--hearing him screaming in pain, and begging me to "please help him!"
I knew that if Kevin did not find some way to stop these multiple, daily attacks of unbearable pain, that  I would discover why they called these CH "suicide headaces."

Kevin's life became CONTROLLED by his chronic cluster headaches...everything he enjoyed stoppped: his love of cycling, being with his family, working in his yard, traveling.

The side-effects of the surgery: the left side of his face is numb.  NUMB is very different from paralysis...no one can look at him and know his face is numb.  His eye requires daily eye drops, and he must wear protective goggles when doing yard work, etc.  He has learned to chew without biting his tongue.

BUT, seeing my son live each day NOT CONTROLLED by anticipating, and enduring HOURS AND HOURS of intense pain is a remarkable gift and relief.

Thank you for listening.
And I offer Kevin an apology for jumping in an "doing the MOM THING."  LOL
Title: Re: HERE IS THE ANSWER TO YOUR PAIN
Post by thomas on Aug 2nd, 2006, 10:59am
Joyce, I have nothing but good wishes for your son.  I am only worried about misinformation being given out by some one else on this board.  I wish your son pf times and happiness.
Title: Re: HERE IS THE ANSWER TO YOUR PAIN
Post by kevinpix on Aug 2nd, 2006, 6:15pm
Wow, thanks mom.  Let's give a shout out to the moms of the world!!!!!
Title: Re: HERE IS THE ANSWER TO YOUR PAIN
Post by Jonny on Aug 2nd, 2006, 7:50pm

on 08/02/06 at 10:48:56, JoycenSA wrote:
I'm a new poster, and I am KevinPix's mom.


???? Sorry, over my head I guess.  I'm hearing it too,  hello, hello, who's there?????  Speak up!!!!
Title: Re: HERE IS THE ANSWER TO YOUR PAIN
Post by chopmyheadoff on Aug 2nd, 2006, 7:52pm

on 08/02/06 at 10:48:56, 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.

I certainly would not give medical advice to anyone: but Kevin's decision  to have the surgery by Dr. Hurt was a godsend to our family.

I can not express the fear, and complete helplessness I would feel when I would receive his telephone calls in the middle of the night--hearing him screaming in pain, and begging me to "please help him!"
I knew that if Kevin did not find some way to stop these multiple, daily attacks of unbearable pain, that  I would discover why they called these CH "suicide headaces."

Kevin's life became CONTROLLED by his chronic cluster headaches...everything he enjoyed stoppped: his love of cycling, being with his family, working in his yard, traveling.

The side-effects of the surgery: the left side of his face is numb.  NUMB is very different from paralysis...no one can look at him and know his face is numb.  His eye requires daily eye drops, and he must wear protective goggles when doing yard work, etc.  He has learned to chew without biting his tongue.

BUT, seeing my son live each day NOT CONTROLLED by anticipating, and enduring HOURS AND HOURS of intense pain is a remarkable gift and relief.

Thank you for listening.
And I offer Kevin an apology for jumping in an "doing the MOM THING."  LOL


godammit !! well said !!
Good for you  [smiley=thumb.gif]
Title: Re: HERE IS THE ANSWER TO YOUR PAIN
Post by rickyshot on Aug 3rd, 2006, 7:33pm
Joycen I also suffer from complicated migraines as well as ch and they used to be hormally controlled that is always coming with a week before my period and my period. Two weeks of garanteed hell for years. To say the least my life was devastated. WEll I begged the docs to give me a hysterectomy and me the scholmozzel Iam did not get the results I hoped for. Not only did the headaches remain but now I had surgical menopause to deal with and the body changes to go with it. Believe me I understand the need for draconian measures. Personally I am not willing to try this type of surgery you son had. I am glad it worked for him . Me I am not so lucky so I draw the line there. What one man would not do another would. And not all treatments work for everybody that is why there are so many options and I don't pooh pooh any one if someone gets relief. I do however have to stand against dangerous misinformation that CH Tom puts out and I am glad others on this thread set that record straight. Anyways at present I am considering alternative route (busting). Never say never. Shit if I was chronic I might have considered the surgery. But as others say these things need a lot of research and informed information.
I am happy it worked for your son and that the tradeoff of numbness and other affects was a good one for him.
Good luck to both of you and keep us informed of this.


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