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        Cluster Headache Help and Support >> Medications, Treatments, Therapies >> Surgery
        
(Message started by: MR_FLOOR on May 17th, 2007, 10:39pm)
Title: Surgery
Post by MR_FLOOR on May 17th, 2007, 10:39pm
I always why they cant deaden the nerves or remove them surgically.that mite sound stupid but my mind wanders when I have a fork in my eye.



Dave  [smiley=yikes.gif]
Title: Re: Surgery
Post by thebbz on May 17th, 2007, 10:51pm
Go through the meds board and read...there are some available .
Happy reading.
DBS  Deep brain stimulation
Occipital nerve block
There are more.
too ugly for me.
jb
Title: Re: Surgery
Post by UN solved on May 18th, 2007, 9:03pm
There are some surgeries that will kill the nerves. It's neither the DBS or the Occipital blocks though. The surgeries that kill these nerves will also leave your face permanently numb or paralyzed. The attacks may then start on the other side. You can't do this to both sides of your face or you'll really be screwed and the pain may still somehow break through. It should only be considered as the very last resort.

UNsolved
Title: Re: Surgery
Post by MR_FLOOR on May 19th, 2007, 2:45pm
Hey Unsolved,
                I don't want that [smiley=oops.gif].That would be like bells palsy or whatever it's called.


Dave
Title: Re: Surgery
Post by zuesthedog on May 24th, 2007, 2:56pm
check out trig. nerve stim. I`ve had one implanted over a year ago. Its my oppion that this as close to a cure as I could come. If you want more info on this give me a hollar and I`ll fill you in on the details.                                                      PFD to all          zuesthedog
Title: Re: Surgery
Post by rolo65 on May 24th, 2007, 4:34pm
I had an Occipital nerve block, and it was hell for a week after the 2 day's it took to ware off. I'll never do that again. It wasn't cheep ether, just made the pain move to the back of my head. Left me with two spots to rub and I need 1 hand for the O2. That’s my experience anyway. I would never let the doc go happy with the knife!

Rolo…
Title: Re: Surgery
Post by MR_FLOOR on May 28th, 2007, 4:36am

on 05/24/07 at 14:56:11, zuesthedog wrote:
check out trig. nerve stim. I`ve had one implanted over a year ago. Its my oppion that this as close to a cure as I could come. If you want more info on this give me a hollar and I`ll fill you in on the details.                                                      PFD to all          zuesthedog




Are you chronic Zues? Are you completely pain free?LMK



Dave
Title: Re: Surgery
Post by zuesthedog on May 29th, 2007, 12:35pm
Sorry it took me so long to get back. Yes I was chronic for about 12 years. Right before the stim 3-4 attacks a night. Now I had 3-4 or so over a years time, but even with the few i can use the stim. as a abortive. Its works great with a little o2, in about 15 mins. That beat the hell out of the normal attacks lasting 2-2.5 hrs.                                                                                                         PFD to all john
Title: Re: Surgery
Post by MR_FLOOR on May 30th, 2007, 11:27pm
Thanks for the info Zues I'm going to look into that. ;;D





Dave
Title: Re: Surgery
Post by MR_FLOOR on May 30th, 2007, 11:29pm
BTW Zues how does that thing work? [smiley=huh.gif]





Dave
Title: Re: Surgery
Post by zuesthedog on Jun 6th, 2007, 3:24pm
Hello again dave. I had it put in Feb 2 2006. At that point I was beiing hit 3-4 times a night . In one month I had about 18 trips to the er. The surgery was done as outpatient in two trips . One toinstall the battery, wich is in the chest. The second was to install the stim. Its located right above the left eyebrow, closer to the nose. Awire connects the two, its all below skin and you can hardly tell its there[ for anyone who is a little vain].The unit comes with a remote control. I can turn it on and off, Ican adjust the freqency, and voltage. I did have to search around for a couple of weeks to find what worked best for me. Man all I can say is that it changed my life. I was so bad suicide crossed my mine several times. I you nedd more info. I would be willing to give you my phone number[I`ve got unlimited long distance. Eitherway I wish you PFDs best of luck John
Title: Re: Surgery
Post by dbsworks4me on Jun 14th, 2007, 11:10pm

on 06/06/07 at 15:24:37, zuesthedog wrote:
Hello again dave. I had it put in Feb 2 2006. At that point I was beiing hit 3-4 times a night . In one month I had about 18 trips to the er. The surgery was done as outpatient in two trips . One toinstall the battery, wich is in the chest. The second was to install the stim. Its located right above the left eyebrow, closer to the nose. Awire connects the two, its all below skin and you can hardly tell its there[ for anyone who is a little vain].The unit comes with a remote control. I can turn it on and off, Ican adjust the freqency, and voltage. I did have to search around for a couple of weeks to find what worked best for me. Man all I can say is that it changed my life. I was so bad suicide crossed my mine several times. I you nedd more info. I would be willing to give you my phone number[I`ve got unlimited long distance. Eitherway I wish you PFDs best of luck John


John, I had a deep brain stimulator implanted in November 2006, is that what you had? Sounds like it... I would love to talk to you, if so, there isn't anyone I know of that has had anything like what I had and what you describe. Kinda lonely out here... I tried to email you but it didn't work. My email is: jkrischicago@yahoo.com
Please contact me,
Thanks,
Kris
Title: Re: Surgery
Post by Linda_Howell on Jun 14th, 2007, 11:27pm

 
Quote:
Kinda lonely out here...


  Yep.   I would believe that.
Title: Re: Surgery
Post by clusterwife on Jun 21st, 2007, 1:03pm
My hubby kevin had surgery to kill the nerves on his left side.  Worked well for 2 yrs only to have the pain switch sides.  Do your homework, for some it works, for a while atleast.  His life, and mine too, is better BECAUSE of the surgery, but there are also some setbacks that go along with pampering your eye constantly.  It's like anything, are the drawbacks worse than the condition?  In kevin's mind and as he says it, "I'd rather be partially numb than dead."  He showed me the gun he bought, he was serious, and scared, and prayed.  He and I made this decision, with our faith in God and the doctors, that it was for the good.  And, most days are good, but every now and then, he  gets the headaches, just not AS severe.  Most people do well on meds, kevin didn't.  Just do your homework.  Leah.
Title: Re: Surgery
Post by dbsworks4me on Jun 21st, 2007, 6:48pm

on 06/21/07 at 13:03:58, clusterwife wrote:
Do your homework, for some it works, for a while at least.  His life, and mine too, is better BECAUSE of the surgery, but there are also some setbacks that go along with pampering your eye constantly.  It's like anything, are the drawbacks worse than the condition?  In kevin's mind and as he says it, "I'd rather be partially numb than dead."  He showed me the gun he bought, he was serious, and scared, and prayed.  He and I made this decision, with our faith in God and the doctors, that it was for the good. Leah.


Absolutely, do the research, the homework... Scary as some of these treatments are...
I am so glad that y'all made the decision to have that surgery... I know so many of us with this headache pain have been to the point of thinking death would be better than one more attack from the monster... And, you're right, to paraphrase, it is a trade off, but as in my case, the issues I deal with now because of the surgery are nowhere near the severity of that pain hitting full force...
Thank you for mentioning God and faith... I, too, made my decision in partnership with God, and with faith the size of a mustard seed! My faith and hope were at an all time low, and some days are still painful, but I am glad I had the DBS implant; for me it was the right thing. I am beyond grateful at how well it has worked for me even though I am in dire need of an adjustment to the settings on the implant. Having pain again at about a 6.
I am so happy that Kevin is doing well and that your heart is at ease too. One day at a time, you know?
PFD to all!
Kris
Title: Re: Surgery
Post by UN solved on Jun 21st, 2007, 9:19pm
Dave, just so you'll know ... there is NO proven surgery out there for clusters yet. No matter what you hear or read, a surgery may or may not help, may or may not make things worse. It's a gamble if you choose surgery.

Have you tried all the usual drugs and combos ?
Have you tried DHE to break the cycle?
Have you tried an Occipital block ? Sphenopalatine block ? RFG ?
Have you tried shrooms ? LSA ?
Have you tried Kudzu ?
Have you tried Histamine desensitization ?

I could go on and on. Try everything first !!

Goodluck

UNsolved
Title: Re: Surgery
Post by zuesthedog on Jun 25th, 2007, 3:10pm
Hello all `as usall Micheal is right every one should try every available option before surgery. Even surg. has several options. There D.b.s [ which scares the hell out of me] I`ve heard that at least 3 people have died from a D.B.S. All stimulator have a tendancy to migrate.With a D.B.SThat spells brian damage or death. Burning the nerve leads to permanent facial paralz.I guess the 2 other surgrey Trig. and occip. nerve stimm.also has its draw backs; but I haven`t found them yet. I`ve had both. The opccip. didn`t work as well as the trig. stim. It also migrated and had to be removed. I`ve had the trig. stim. over a year now and its been great. Both nerve stims were done as out patient and is totally reversable.So think long and hard and i wish you the best.                                                                                                                                                                                    AS to the wife whos has a husband with thougts of suicide. Hang in there with him. If he needs any one to talk to you can have him give me a call {513-471-7922] I am more than willing just to talk if he needs someone.I know your probably a very suporting wife. True Cluster head usally feel knowone understandsexcept another C.H. So if him or anyone eles out there needs someone. I have unlimited long distance ,feel free to call anytime.                                                                                                                Well PFD to all                                                                                                                            John
Title: Re: Surgery
Post by Klusterkopf on Jun 25th, 2007, 8:54pm

on 06/25/07 at 15:10:07, zuesthedog wrote:
Hello all `as usall Micheal is right every one should try every available option before surgery. Even surg. has several options. There D.b.s [ which scares the hell out of me] I`ve heard that at least 3 people have died from a D.B.S. All stimulator have a tendancy to migrate.With a D.B.SThat spells brian damage or death. Burning the nerve leads to permanent facial paralz.I guess the 2 other surgrey Trig. and occip. nerve stimm.also has its draw backs; but I haven`t found them yet. I`ve had both. The opccip. didn`t work as well as the trig. stim. It also migrated and had to be removed. I`ve had the trig. stim. over a year now and its been great. Both nerve stims were done as out patient and is totally reversable.So think long and hard and i wish you the best.                                                                                                                                                                                    AS to the wife whos has a husband with thougts of suicide. Hang in there with him. If he needs any one to talk to you can have him give me a call {513-471-7922] I am more than willing just to talk if he needs someone.I know your probably a very suporting wife. True Cluster head usally feel knowone understandsexcept another C.H. So if him or anyone eles out there needs someone. I have unlimited long distance ,feel free to call anytime.                                                                                                                Well PFD to all                                                                                                                            John


DBS is actually quite safe, though its effectiveness remains in question.  There has been only one fatality in Europe, a woman in Belgium and the cause of the bleeding that killed her was not determined.  The implant does not move deeper into the brain and does not cause any damage.  This operation has been used with great success for people with Parkinson's Disease; the difference in the operation for that and CH is the placement of the electrode.
Title: Re: Surgery
Post by Maffumatt on Jun 25th, 2007, 9:22pm
No one under any circumstance should accept any medical advice from Klusterkopf.
Title: Re: Surgery
Post by Klusterkopf on Jun 26th, 2007, 2:47am

on 06/25/07 at 21:22:06, Maffumatt wrote:
No one under any circumstance should accept any medical advice from Klusterkopf.


Indeed, let us not let ourselves get confused by the facts.  The DBS operation is not like the pre-frontal lobotomy that you had years ago. :-/ [smiley=huh.gif]
Title: Re: Surgery
Post by Maffumatt on Jun 26th, 2007, 3:28pm
I'm not taking your bait John, those of us that have been here awhile, know who and what you are, a fraud. The new guys don't. Have a nice day.
Title: Re: Surgery
Post by Ray on Jun 26th, 2007, 3:50pm
I investigated the surgical alternatives a few years back, when I was chronic.  As previously stated, the statistics are not really in your favor.

Only about half of those taking this route are helped
Only to have numbness on that side of the face
Only to have to wash out that eye frequently due to lack of sensation of foreign matter in the eye.
Only to have TMJ due to no feedback on that side of the jaw
Only to have the attacks switch to the other side of the face.

I asked a well known Neurosurgeon at the Cleveland Clinic 2 questions during my "consult" with him.

Q1) Under what circumstances would you recommend this procedure to your patients?

A1) Never, I would never recommend this procedure to my patients.

Q2) (Flabbergasted) Then why would you perform this surgery?

A2) Because I am VERY GOOD AT IT.

At this point, I called an end to the consult and drove my nearly 3 hour drive home, greatly discouraged and relieved at the same time.

Research surgical alternatives extremely carefully.  I would only consider these as an alternative to suicide, personally, and if it did not help, I would probably continue on to plan B.  This is just my take on it, you can do whatever you want.

Wishing you PF days and nights,

Ray
Title: Re: Surgery
Post by Redd on Jun 26th, 2007, 6:44pm
Ahh yes...burning the trig nerve.  So many other invasive things that they will try when they run out of mainstream options.

Anyone considering surgery MUST (IMHO) exhaust ALL other options before letting someone cut into your head.

www.clusterbusters.com

nuff said.
Title: Re: Surgery
Post by UN solved on Jun 26th, 2007, 6:55pm

on 06/25/07 at 20:54:29, Klusterkopf wrote:
DBS is actually quite safe ...

There has been only one fatality


How can you state that it's " ... quite safe ..."  and then state that there was a fatality ?? That doesn't sound "quite safe" to me !!

UNsolved

DBS should be a very last resort, before suicide (for a long while yet)
Title: Re: Surgery
Post by Klusterkopf on Jun 26th, 2007, 9:52pm

on 06/26/07 at 18:55:39, UN solved wrote:
How can you state that it's " ... quite safe ..."  and then state that there was a fatality ?? That doesn't sound "quite safe" to me !!

UNsolved

DBS should be a very last resort, before suicide (for a long while yet)


In Germany it is a last resort.
Title: Re: Surgery
Post by Redd on Jun 26th, 2007, 10:26pm

on 06/26/07 at 21:52:37, Klusterkopf wrote:
In Germany it is a last resort.




DO NOT CONSIDER ANY ADVICE OR MEDICAL INFORMATION FROM KUSTERKOPH AS BEING SOUND, OR ADVISABLE.
Title: Re: Surgery
Post by AlienSpaceGuy on Jun 26th, 2007, 11:08pm
Hey Klusterkopf,

In one of your previous incarnations you stated Here (http://www.clusterheadaches.com/cgi-bin/yabb/YaBB.cgi?board=2005chspecific;action=display;num=1126416961;start=0#2) that you'll get a DBS implant on Sep 12th, 2005.

Three months later you reported Here (http://www.clusterheadaches.com/cgi-bin/yabb/YaBB.cgi?board=medsarchive2005;action=display;num=1131551233;start=0#5) some positive results.

Why don't you tell us how you're doing 2 years and 9 months later. Are you still free of pain?

Or was the surgery story as believable as the other BS (Scheisse oder Scheiße) you write?

WTF            ::)


PS, Lügen haben kurze Beine.
Title: Re: Surgery
Post by Linda_Howell on Jun 27th, 2007, 12:24am



   I thank you Ueli for this.

   [smiley=winkkiss.gif]
Title: Re: Surgery
Post by Klusterkopf on Jun 27th, 2007, 1:30am

on 06/26/07 at 22:26:16, Redd wrote:
DO NOT CONSIDER ANY ADVICE OR MEDICAL INFORMATION FROM KUSTERKOPH AS BEING SOUND, OR ADVISABLE.


OK, you caught me.  Really, in Germany, if you go to a doctor and say that you have a headache, he has the polizei take you to a hospital, tie you to a surgical table and Nazi doctors perform DBS on you. ::)
Title: Re: Surgery
Post by LeLimey on Jun 27th, 2007, 4:08am
For the benefit of new people, klusterkopf is our resident troll.  
 
He serves no purpose except to confuse, obfuscate and distress posters while providing a wealth of misinformation of his own.    

He has previously stated he doesn't even have Cluster Headaches but has had an undiagnosed condition for over 30 years. He only advocates narcotics and surgery. The narcotics we know he is addicted to, the surgery - well its doubtful that ever took place. He is not German, he is not any of the nationalities he has posted as previously. He is in fact an American living in Holland.
   
The best response to him is no response. All we do is inform people as best we can that his posts are unsound.
Title: Re: Surgery
Post by Klusterkopf on Jun 27th, 2007, 8:17am

on 06/27/07 at 04:08:44, LeLimey wrote:
For the benefit of new people, klusterkopf is our resident troll.  
 
He serves no purpose except to confuse, obfuscate and distress posters while providing a wealth of misinformation of his own.    

He has previously stated he doesn't even have Cluster Headaches but has had an undiagnosed condition for over 30 years. He only advocates narcotics and surgery. The narcotics we know he is addicted to, the surgery - well its doubtful that ever took place. He is not German, he is not any of the nationalities he has posted as previously. He is in fact an American living in Holland.
   
The best response to him is no response. All we do is inform people as best we can that his posts are unsound.


How can you, with supposed severe CH, [smiley=huh.gif] consume so much alcohol and brag about it? [smiley=beer.gif] [smiley=oops.gif]
Title: Re: Surgery
Post by Maffumatt on Jun 27th, 2007, 8:37am
Reading your posts is enough to drive anyone to drink, even those that have had a pre-frontal lobotomy.
Title: Re: Surgery
Post by Shedz on Jun 27th, 2007, 8:44am
[smiley=laugh.gif] [smiley=laugh.gif] [smiley=laugh.gif]
Title: Re: Surgery
Post by black on Jun 27th, 2007, 9:14am
it is said that max pain free after the surgery is 3 years.does it worth the risk apart from the fact that each of us is a different case under the same name?and the main question-what happens after 3 years and one day?
Title: Re: Surgery
Post by LeLimey on Jun 27th, 2007, 9:46am

on 06/27/07 at 08:17:13, Klusterkopf wrote:
How can you, with supposed severe CH, [smiley=huh.gif] consume so much alcohol and brag about it? [smiley=beer.gif] [smiley=oops.gif]


With the amount of clusterheads that have met me in both the US and the UK and stayed at my house I don't think I need to validate your comments John however I would like to point out that there is a large mount of jumour and joking in my posts which you usually ignore - unless you can twist it to your own nefarious means.
Title: Re: Surgery
Post by Brewcrew on Jun 27th, 2007, 11:14am
Stop poking the troll, people.


on 06/27/07 at 08:17:13, Klusterkopf wrote:
How can you, with supposed severe CH, [smiley=huh.gif] consume so much alcohol and brag about it? [smiley=beer.gif] [smiley=oops.gif]

For the benefit of new people, klusterkopf is our resident troll.    
 
He serves no purpose except to confuse, obfuscate and distress posters while providing a wealth of misinformation of his own.    

The best response to him is no response. All we do is inform people as best we can that his posts are unsound.
Title: Re: Surgery
Post by Klusterkopf on Jun 27th, 2007, 1:02pm

on 06/27/07 at 08:37:29, Maffumatt wrote:
Reading your posts is enough to drive anyone to drink, even those that have had a pre-frontal lobotomy.


My most sincere apologies-I didn't realize that Helen (or was it you?) had had a pre-frontal lobotomy.  Es tut mir sehr leid.  
Title: Re: Surgery
Post by Maffumatt on Jun 27th, 2007, 1:13pm
apology accepted, have a nice day.
Title: Re: Surgery
Post by Klusterkopf on Jun 27th, 2007, 4:29pm

on 06/27/07 at 13:13:45, Maffumatt wrote:
apology accepted, have a nice day.


Danke und ein schoenes schmerzfrei nacht!

[smiley=me&mb.gif] [smiley=hug.gif]!
Title: Re: Surgery
Post by AlienSpaceGuy on Jun 27th, 2007, 8:11pm

on 06/27/07 at 16:29:51, Klusterkopf wrote:
Danke und ein schoenes schmerzfrei nacht!

Our indigenous German friend makes in six words six errors in orthography, grammar and syntax. Any third-grader in Germany would spot them.

It should be:
     Danke und eine schöne_ schmerzfreie Nacht!

BTW, Only a troll with his knowledge of German from Bablefish would chose "schön" is an adjective in this context.
BTW2 Clusterkopf is written with a C in German too.
BTW3 The letter ö is to the right of the L on your keyboard.


When are you getting lost?           [smiley=moonwiggle.gif]
Title: Re: Surgery
Post by MR_FLOOR on Jun 27th, 2007, 8:17pm

on 06/27/07 at 20:11:53, AlienSpaceGuy wrote:
Our indigenous German friend makes in six words six errors in orthography, grammar and syntax. Any third-grader in Germany would spot them.

It should be:
     Danke und eine schöne_ schmerzfreie Nacht!

BTW, Only a troll with his knowledge of German from Bablefish would chose "schön" is an adjective in this context.
BTW2 Clusterkopf is written with a C in German too.
BTW3 The letter ö is to the right of the L on your keyboard.


When are you getting lost?           [smiley=moonwiggle.gif]

[smiley=crackup.gif] [smiley=crackup.gif] [smiley=crackup.gif] [smiley=crackup.gif]
Title: Re: Surgery
Post by Maffumatt on Jun 27th, 2007, 9:54pm

on 06/27/07 at 00:24:52, Linda_Howell wrote:
   I thank you Ueli for this.

   [smiley=winkkiss.gif]

Me too.
If you're going to be a fraud John, at least do your homework.
Title: Re: Surgery
Post by George_J on Jun 28th, 2007, 11:06am
Maybe if he pretended to speak Urdu.....
Title: Re: Surgery
Post by curefinder on Jul 10th, 2007, 6:22am
Dear Dave:
Surgery for migraine/ cluster is done since 1998.
You can see easy the results of this simple surgery before you do it by pressure points test (but you must be sure that you close the artery in place # 1 before its bifurcation) - see details in: www.migrainesurgery.4t.com    ---   www.alisultaneh.8m.com    ----    or if patients dont want this simple surgery he can do this simple devices at home as descriped and shown in the web sites.
The deference between migraine and cluster headaches is the participate of arteries around the eyes ball in cluster is too much more than in migraine.
Only close of this artery in place # 1 can stop cluster headaches once and for ever in 75% , 20% need additional finger pressure over the frontal branch in place # 2 even if it was closed in place # 1 due to too many anastomosis (connection) between small arteries in this area, 5% of cluster patients have a sever alergic reaction in area around the nose and eyes they have a sever allergic reaction to the smeels and need a pressure over the smal artery under the skin in the medial edge of eyes.
All this variants dont exist in migraine patients only in cluster headaches.
. :o
Title: Re: Surgery
Post by cluster on Jul 10th, 2007, 6:33am

on 06/26/07 at 21:52:37, Klusterkopf wrote:
In Germany it is a last resort.


Klusterkopf,

in May 2007 Professor Diener (HCD) wrote:

"Kollegen, die Erfahrung mit der tiefen Hirnstimulation bei Patienten mit Clusterkopfschmerz haben, würden im Moment in Deutschland von dieser Methode eher abraten, da hier zu Lande die Therapieergebnisse schlecht sind."

Source: http://www.dmkg.de/grundla/j16n02/news09.htm

Can you translate that?  - Your English is surely better than mine!  ;)

If not, I will do the translation.

pf wishes,
Friedrich
Title: Re: Surgery
Post by southwalessunshine on Jul 10th, 2007, 6:59am
Ray,
You mentioned TMJ.  I believe I have TMJ but am having a mare getting it diagnosed.  the doc sent me to the hospital to Maxillo facial and they gave me a bite plate.  Then I was discharged with no label for what was wrong.  the dentist just gave me another bite plate but told me for a diagnosis i would have to see my doc. i revisited the doc and he told me I had to see the dentist!  What exactly is TMJ?  Can anyone here name any good sites that could halp me with info?  Also, I have heard that TMJ could be a cause of migraine, could the same be said for CH?


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