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dougW
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trigeminal nerve sectioning
« on: May 25th, 2003, 9:33pm » |
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As reported in on Medscape, published in the journal Neurology. Note the side effects of this surgery, certainly a "last resort" treatment for chronic clusters.
Doug Wright
Trigeminal Nerve Sectioning May Be a Valid Option for Chronic Cluster Headache
NEW YORK (Reuters Health) May 09 - In carefully selected patients with chronic cluster headache, trigeminal nerve sectioning appears to be an effective treatment, findings from a new study suggest.
Chronic cluster headache (CCH) is a rare disorder that is often resistant to medical therapy, Dr. David W. Dodick and colleagues note in the April 22nd issue of Neurology. Although CCH patients are often referred for surgical intervention, sectioning the trigeminal nerve has typically been considered a last resort procedure for desperate patients.
The new results, based on a study of 17 patients with intractable CCH, suggest that, perhaps, trigeminal nerve sectioning should be viewed differently.
The patients ranged in age from 27 to 67 years and all were men with a smoking history. On average, the patients had tried 8 different medications to prevent or abort their headaches. Nine of the patients had undergone at least one radiofrequency ablation procedure prior to nerve sectioning.
In all patients, sectioning of the trigeminal nerve root was accomplished via the suboccipital route. Partial sectioning was performed in four patients and complete sectioning was performed in the remainder. The average follow-up period was 6.7 years.
Overall, 15 of the patients experienced complete or near-complete relief of their symptoms after nerve sectioning, Dr. Dodick, from the Mayo Clinic in Scottsdale, Arizona, and colleagues note. Complete relief was more common with complete sectioning than with partial sectioning.
Mild persistent ocular complaints and mild masticator muscle weakness were relatively common problems after surgery, the authors note. Meningitis, a cerebrospinal fluid leak, and anesthesia dolorosa were observed in one patient each following surgery. Two patients experienced headache recurrences and two patients developed headaches on the previously unaffected side.
The results indicate that trigeminal nerve sectioning is an effective treatment for CCH cases resistant to maximal medical therapy, the investigators believe. Whether such surgery should be performed before or after a percutaneous ablative procedure "will depend on the preferences of the treating physician and patient and the surgical expertise available," they add.
Neurology 2003;60:1360-1362.
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Pinkfloyd
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Re: trigeminal nerve sectioning
« Reply #1 on: May 26th, 2003, 12:27am » |
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on May 25th, 2003, 9:33pm, dougW wrote:As reported in on Medscape, published in the journal Neurology. Note the side effects of this surgery, certainly a "last resort" treatment for chronic clusters.
Doug Wright
Mild persistent ocular complaints and mild masticator muscle weakness were relatively common problems after surgery, the authors note. Meningitis, a cerebrospinal fluid leak, and anesthesia dolorosa were observed in one patient each following surgery. Two patients experienced headache recurrences and two patients developed headaches on the previously unaffected side.
Neurology 2003;60:1360-1362.
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Thanks Doug...not picking on you.....
1. I wonder how many of these guys would have had to even show up for surgery had they been offered mushrooms first?
2. Do ya think the two poor bastards that had them reoccur on the opposite side, might have liked to hear about mushrooms before going under the "last resort" knife?
3. Interesting they list a few "side effects" like (paraphrased)..Mild persistent ocular complaints and mild masticator muscle weakness <snip> Meningitis, a cerebrospinal fluid leak, anesthesia dolorosa, headache recurrences and developed headaches on the previously unaffected side....
But the fact that half their face is numb and drooping and they'll be chewing on their tongues the rest of their lives, must be on a list of "results" somewhere.....
And *this* is legal..... 
I was approved for both Microvascular Decompression (with Dr. Jannata in Pa) and the Gamma Knife (at the U. of Chicago) and awaiting my decision when I decided that following a year of research into psilocybin, I had one more thing to try before what "they" called my last resort. That was three years ago now and the only side effect I've experienced is a new found love for Widespread Panic....the group, not the emotion.
Yes, someday my clusters may return and shrooms may not help...who knows. I'll let you all know when I finish my 6.7 year followup.
Peace out....
Happy Memorial Day Everyone!
Pinkfloyd
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"There is no passion so contagious as that of fear."
[Michel de Montaigne
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Snappy
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Re: trigeminal nerve sectioning
« Reply #2 on: May 26th, 2003, 5:19am » |
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I would rather be on the dark side of the moon myself. Nobody is going to cut on me  , no-way, no-how. Last resort my ass. Morphine is a last resort, getting cut on is just plain stupid. But I got to tell you how sorry I am for CCH suffers. Mine only come every two years, plus or minus a couple of months, so what the hell do I know? I can only imagine how horrible it must be to have these beasts all the time.
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tommyD
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Re: trigeminal nerve sectioning
« Reply #3 on: May 26th, 2003, 6:49am » |
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We refer to it as the trigeminal NERVE, but it's really a big bundle of a whole shitload of nerves, serving one entire side of your face and head.
When a doc suggests this procedure, ask if the trigeminal can be hooked back up again if things don't go well...
Also note: in general, neurosurgery is risky business; neurosurgeons pay some of the highest malpractice insurance premiums.
-tommyD
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cbolony
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I love YaBB 1G - SP1!
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Re: trigeminal nerve sectioning
« Reply #4 on: May 26th, 2003, 7:58am » |
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Quote:| When a doc suggests this procedure, ask if the trigeminal can be hooked back up again if things don't go well... |
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That's a nice way to tell the doctor to go fuck him self ;D ;D
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MarkHW
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Re: trigeminal nerve sectioning
« Reply #5 on: May 27th, 2003, 3:36pm » |
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My neuro was suggesting I look into Gamma knife. He told me the risks and was up front about the fact that I might not want to do it....
I'm chronic and he's running out of ideas!
I'm going to set up an evaluation at the may clinic in Arizona to see about the ocipital nerve stimulation. This looks reversable - just take out the implants!
I haven't decided to go ahead, but have decided to at least look into it.
I have not done shrooms - I have concerns about that too... the biggest being no meds (including imitrex). The other is that all drugs seem to hit my system hard. I was on .5 mg of sansert a day and could barely function at first.
Mark
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The clusterhead formerly known as williamsmh.
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Pinkfloyd
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Re: trigeminal nerve sectioning
« Reply #6 on: May 27th, 2003, 5:47pm » |
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on May 27th, 2003, 3:36pm, williamsmh wrote:My neuro was suggesting I look into Gamma knife. He told me the risks and was up front about the fact that I might not want to do it....
I have not done shrooms - I have concerns about that too... the biggest being no meds (including imitrex). The other is that all drugs seem to hit my system hard. I was on .5 mg of sansert a day and could barely function at first.
Mark |
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Mark,
I understand your concerns about the shroom treatment. Stopping the meds is a big concern and the biggest hurdle in many cases.
I was getting hit with a 10 every 2 hours, around the clock when I detoxed...not fun at all but in the end worth it.(for me)
There are things that might help IF you ever decide to go that way.
This is from two different FAQ's....
Oxygen - Technically, a prescription drug, but there should be no interaction problem using this popular and effective abortive. Breath pure oxygen for 10 to 15 minutes at 7 to 12 liters per minute. A rebreather mask must be used. Be careful not to fall asleep with the mask on; breathing oxygen for long periods can damage the lungs.
Ice, cold water, cold air -- Clusterheads have thousands of preferred methods of using cold to help ease attacks: Ice packs, cold towels, sticking your head in the freezer, standing with a cold shower blasting on your head, pressing your eye against air-conditioning ducts, going out in subfreezing weather in your pajamas...
Heat -- On the other hand, some clusterheads need heat. Hot packs, hot towels, hot showers, heating ducts...but please don't stick your head in the oven.
Water -- Instead of pouring cold water over your head, you can try drinking it. Some have successfully broken cycles by drinking large amounts of water throughout the day. Drink at least X..... This writer swears he has aborted two out of three attacks by drinking at least a quart of cold water in two minutes at the first sign of an attack. Drinking large amounts of water over time may deplete vitamins and minerals, and supplements may be needed.
Exercise - Some have reported that 10 to 20 minutes of intense aerobic exercise can abort an attack. Clusterheads have been seen sprinting around the block in otherwise respectable neighborhoods in the middle of the night. Carry identification; you may meet the police. An exercise bike will do the trick, but you have to pedal hard...
[TD]
10.1 Melatonin
"Melatonin And Cluster Headaches"
In this study, 10 mg of melatonin was administered to half of 20
cluster-headache patients in a double-blind controlled study that
lasted 14 days. Headache frequency was significantly reduced in the
melatonin treatment group. Five of 10 people in the melatonin
group reported that their attack frequency declined after only 30-35
days of treatment. No patient in the placebo group responded."
Caphalalgia (Vol 16, Issue 7 1996)
I have found that as little as 3mg at bedtime was as effective with
REM induced clusters as was Doxepin." (BW) (Be prepared for
possible increased/intensified dreaming)
Many people that have tried melatonin have reported excellent
results. I am hoping that a large study will be conducted and results
made known.
10.2 Magnesium
Current work is being done with using magnesium as a preventative
for clusters and taken as an OTC preparation. Dosages range from
200 mg to 400 mg per day with varying results
10.3 Vitamin B-2
"Since upping my dosage of B2 to 200 mg per day about a month
ago, for the first time in my life I have been free from my cluster
headaches. I am referring to cluster (vascular) and not migraines. I
have absolutely no idea why it works for me."(Bud Siemer)
Another member also reported good results with B-2 in the same
thread. Others have had no success. As is the case with most
treatments, as we all know.
.....
Of course, the number of hits you're taking every day makes a big difference...
I'm not trying to push you towards this treatment, just wanted you to see some things that might help, even if you go another way.
The nerve stimulation implants do seem to have the least amount of negative side effects when it comes to an operating room.
Good luck in your quest for relief. May it come in whatever closet you open next.
Pinkfloyd
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"Nothing is so firmly believed as what we least know."
"There is no passion so contagious as that of fear."
[Michel de Montaigne
www.clusterbusters.com
www.obscuredview.blogspot.com
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MarkHW
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Re: trigeminal nerve sectioning
« Reply #7 on: May 31st, 2003, 3:14pm » |
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Thanks PinkFloyd....
I just posted my reasons for not doing shrooms (at this point) in the Gamma Knife thread.
I am going to keep your post here for future reference.
Thanks again!
Mark
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The clusterhead formerly known as williamsmh.
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Pinkfloyd
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Re: trigeminal nerve sectioning
« Reply #8 on: May 31st, 2003, 11:02pm » |
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on May 31st, 2003, 3:14pm, williamsmh wrote:Thanks PinkFloyd....
I just posted my reasons for not doing shrooms (at this point) in the Gamma Knife thread.
I am going to keep your post here for future reference.
Thanks again!
Mark |
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You're welcome Mark.
All good sound reasons. Hopefully the ONS will be your answer...best of luck, for you and your family. As we all know this is a disease that is unfortunately shared by the entire family unit.
Please keep my email and if you ever want/need to discuss the other subject matter, feel free.
Implants are becoming more common in headache treatment. Not sure if you or everyone here saw the following article on what is going on in the chicago area. There was quite a writeup in the local papers here that was picked up on by CNN...
http://www.cnn.com/2003/HEALTH/02/18/zapping.headaches.ap/index.html
good luck,
P.Floyd
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"Nothing is so firmly believed as what we least know."
"There is no passion so contagious as that of fear."
[Michel de Montaigne
www.clusterbusters.com
www.obscuredview.blogspot.com
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