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MR_FLOOR
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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 
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| « Last Edit: May 17th, 2007, 10:41pm by MR_FLOOR » |
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thebbz
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Re: Surgery
« Reply #1 on: May 17th, 2007, 10:51pm » |
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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
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It wasn't me I didn't do it
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UN solved
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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
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MR_FLOOR
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Re: Surgery
« Reply #3 on: May 19th, 2007, 2:45pm » |
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Hey Unsolved,
I don't want that  .That would be like bells palsy or whatever it's called.
Dave
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zuesthedog
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Re: Surgery
« Reply #4 on: May 24th, 2007, 2:56pm » |
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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
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zues
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rolo65
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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…
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MR_FLOOR
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Re: Surgery
« Reply #6 on: May 28th, 2007, 4:36am » |
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on May 24th, 2007, 2:56pm, 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 |
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Are you chronic Zues? Are you completely pain free?LMK
Dave
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zuesthedog
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Re: Surgery
« Reply #7 on: May 29th, 2007, 12:35pm » |
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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
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zues
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MR_FLOOR
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Re: Surgery
« Reply #8 on: May 30th, 2007, 11:27pm » |
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Thanks for the info Zues I'm going to look into that. 
Dave
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MR_FLOOR
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Re: Surgery
« Reply #9 on: May 30th, 2007, 11:29pm » |
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BTW Zues how does that thing work? 
Dave
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zuesthedog
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Re: Surgery
« Reply #10 on: Jun 6th, 2007, 3:24pm » |
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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
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zues
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dbsworks4me
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Re: Surgery
« Reply #11 on: Jun 14th, 2007, 11:10pm » |
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on Jun 6th, 2007, 3:24pm, 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 |
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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
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Linda_Howell
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Re: Surgery
« Reply #12 on: Jun 14th, 2007, 11:27pm » |
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Yep. I would believe that.
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clusterwife
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Re: Surgery
« Reply #13 on: Jun 21st, 2007, 1:03pm » |
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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.
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Maybe through me he can find the truth, for I will always try.
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dbsworks4me
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Re: Surgery
« Reply #14 on: Jun 21st, 2007, 6:48pm » |
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on Jun 21st, 2007, 1:03pm, 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. |
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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
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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
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zuesthedog
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Re: Surgery
« Reply #16 on: Jun 25th, 2007, 3:10pm » |
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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
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zues
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Klusterkopf
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on Jun 25th, 2007, 3:10pm, 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 |
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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.
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Maffumatt
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No one under any circumstance should accept any medical advice from Klusterkopf.
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Klusterkopf
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on Jun 25th, 2007, 9:22pm, Maffumatt wrote:| No one under any circumstance should accept any medical advice from Klusterkopf. |
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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. 
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Maffumatt
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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.
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Ray
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Re: Surgery
« Reply #21 on: Jun 26th, 2007, 3:50pm » |
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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 .
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
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You have my prayers and compassion-I'm right there with you.
Dum tempus habemus, operemur bonum
*While we have the time, let us do good*
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Redd
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Re: Surgery
« Reply #22 on: Jun 26th, 2007, 6:44pm » |
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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.
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I saw an act of faith today. A man was on his knees, not in a pew in a Church, but in a garden planting seeds. ~~Unknown
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on Jun 25th, 2007, 8:54pm, Klusterkopf wrote:
DBS is actually quite safe ...
There has been only one fatality |
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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)
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Klusterkopf
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on Jun 26th, 2007, 6:55pm, 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)
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In Germany it is a last resort.
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