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Topic: a possible cure??? (Read 851 times) |
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atwitsend
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a possible cure???
« on: Jul 23rd, 2004, 1:28pm » |
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Hey everyone - I haven't posted in a while. Kev went 8 mths PF & then right back to square one again.
When they did return they were 10 times as bad & came on 10 times as fast as normal. I called his dr in Boston that day & told him something needed to be done.
We couldn't go thru this again.
To make a long, long story short -
The orignal operation" deep brain stimulation" was completly refused by the insurance co for liability reasons -
However - his dr came up with another suggestion -
It is an operation for something that's called facial neuralgia. It is constant facial pain behind the eye & cheek area.
Well he had the procedure on Fiday, July 16th. They went in behind the ear (about a 6 inch cut) and placed a sponge between a bulging vein & the trigeminal nerve that were banging together. The dr.thinks this is what was causing the cluster headaches.
I asked the dr why after so many MRI's that these 2 things that were banging together were never seen before. He claims he had a special series of MRI's done zoning in on this area - from many different angles. He said he did see a vien or artery that needed to be "decompressed"
So in the end he decompressed the bulging vein & placed the sponge. The procedure took about 3 hours.
So far so good - no sign of pain at all. He has been resting alot & just waiting. I pray everyday that this is the solution. I pray that Kevin can be the one to help every single sufferer in the whole world.
That's all for now - I'll update next week sometime. Everyone who is still suffering - I will pray for you all !!
If any of you would like any more info on this possible cure - please do not hesitiate to email me. I will keep checking the email- if this is the answer I will support all of you in finding any info that you may need help with.
Cheryl
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don
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Quote:| The dr.thinks this is what was causing the cluster headaches. |
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I find it hard to believe that would be the cause of the CH but it may just be effective in relieving the resulting pain. Hope it continues to be effective.
Keep us posted.
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BruceD
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Re: a possible cure???
« Reply #2 on: Jul 23rd, 2004, 1:41pm » |
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Snicker ...snicker
I hear sponge and can only think of the Seinfeld episode ...
"So ... you think you're sponge worthy?"
BruceD
edited: to add I sure hope it works for him. I guess nothing is crazy if it relieves the pain.
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| « Last Edit: Jul 23rd, 2004, 1:43pm by BruceD » |
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Jeepgun
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I hope this does the trick for him, Cheryl.
Um.. Does this mean we can call him Sponge Bob from now on? 
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floridian
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Could help, only time will tell. We are pretty stingy about using the word "cure" here - there are lots of therapies and treatments, nothing that seems to be a real cure. There are a lot of different operations and nerve blocks that helps some, don't help others. Hope it works for Kevin.
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| « Last Edit: Jul 23rd, 2004, 1:48pm by floridian » |
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atwitsend
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Re: a possible cure???
« Reply #5 on: Jul 23rd, 2004, 1:48pm » |
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Actually - alot of people refer to him as
Sponge Kevin Sqarepants
(Spongebob squarepants)
Not sure where you are from - its a cartoon
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don
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Did they suggest a "life expectancy" for the effectiveness of the treatment?
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thomas
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on Jul 23rd, 2004, 1:47pm, floridian wrote:
That is true. We shall have to wait and see, I do hope it works for him also.
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atwitsend
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Re: a possible cure???
« Reply #8 on: Jul 23rd, 2004, 2:00pm » |
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Sorry Floridian - im not sure what a better choice of word would be besides"cure"
Believe me - he has been thru 14 years and about 1400 suggestions of cures
i guess im jumping the gun saying cure
no offense to anyone - please know i am only trying to help
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floridian
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Do keep us posted - you are helping us more than we can help you and Kevin. Let us know about improvement, side effects, etc. (and no offense taken)
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| « Last Edit: Jul 23rd, 2004, 4:03pm by floridian » |
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echo
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Re: a possible cure???
« Reply #10 on: Jul 23rd, 2004, 2:23pm » |
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No offense taken.
I sure hope this does the trick for him.
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Big Dan
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Re: a possible cure???
« Reply #11 on: Jul 23rd, 2004, 2:41pm » |
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We've heard of people doing some crazy stuff to cure the bastard....
... I sure hope it helps him out...
Let us know if it works....
-Big Dan
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Tom
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Re: a possible cure???
« Reply #12 on: Jul 23rd, 2004, 2:44pm » |
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The a.m. operation is called "microvascular decompression of the trigeminal nerve" or the "Janetta procedure" and is indicated exclusively for the
trigeminal neuralgia so far.
http://www.neurosurgery.ufl.edu/ClinSpec/trigeminal.html :
A small (half dollar sized) opening in the skull allows the superior lateral corner of the cerebellum to be retracted. The trigeminal nerve is easily visualized with the operating microscope. During the operation, a vessel (often the superior cerebellar artery) is usually found compressing the root entry zone of the trigeminal nerve. This vessel is dissected free and padded (with a small peace of teflon sponge) to prevent recurrent compression. This results in permanent relief of pain, without facial numbness, in the vast majority of cases.
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http://www.medstudents.com.br/neuroc/neuroc2.htm
Table 01 : Vessel found to compress the Trigeminal nerve in 1.204 consecutive previously unoperated sides in patients with typical TN (2).
Superior cerebellar artery ---------------- ---75,5%
Anterior inferior cerebellar artery ------------ 9,6%
Posterior inferior cerebellar artery ---------- 0,7%
Vertebral artery ------------------------------------- 1,6%
Basilar artery -----------------------------------------0,7%
Labyrinthine artery --------------------------------- 0,2%
Unnamed small artery ----------------------------5,4%
Vein --------------------------------------------------- 68,2%
Vein only -------------------------------------------- 12,5%
Vein and artery ----------------------------------- 55,7%
Unnamed small artery or vein only --------18,5%
---------------------------------------------------------------------
In my opinion the Janetta procedure my be useful in the treatment of the Cluster Tic Syndrome = CH + Trigeminal neuralgia - there the operation eliminates the "tic" component - but I don't understand how it could influence CH directly.
Thomas
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| « Last Edit: Jul 23rd, 2004, 2:46pm by Tom » |
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Gator
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Re: a possible cure???
« Reply #13 on: Jul 23rd, 2004, 3:04pm » |
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Deep Brain Stimulation in cluster headaches is still comsidered experimental. Most insurance companies won't cover that.
Microvascular decompression has been around awhile. It seems to work for some people, but appears to be a long way from a cure.
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Quote:http://www.mhni.com/clusterheadaches.html
Microvascular decompression of the trigeminal nerve with or without microvascular decompression or section of the nervus intermedius was recently reported to be effective in chronic cluster headache. However, long-term follow-up saw the success rate decrease to 46.6%. Repeat procedures were not beneficial. |
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I do hope Kev continues to be pain free. Maybe he will be one of the lucky ones.
PF prayers and vibes going out to you both.
Gator
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Charlie
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Re: a possible cure???
« Reply #14 on: Jul 23rd, 2004, 10:42pm » |
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All our worries aside, wouldn't it be nice if it works?
We need time........in your case 600 pain free years would be enough for me.
Our caution aside, I'm very happy for you.
Continued good luck.
Charlie
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nancyc
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Re: a possible cure???
« Reply #15 on: Jul 24th, 2004, 11:34am » |
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Prayers going up for Kevin...Please keep us informed on how he is doing....  nancyc
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UN_SOLVED
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Re: a possible cure???
« Reply #16 on: Jul 25th, 2004, 11:36am » |
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on Jul 23rd, 2004, 1:28pm, atwitsend wrote:| The orignal operation" deep brain stimulation" was completly refused by the insurance co for liability reasons - l |
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Don't know where you live but this is NOT available as an option in the USA yet. (Insurance or not)
Hope Kevins PF time last. Keep us posted.
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Samantha_Smith
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Re: a possible cure???
« Reply #17 on: Jul 25th, 2004, 3:01pm » |
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Atwitsend--
Please keep us posted.. I really mean it! I am very interested in knowing the long term benefits and side effects of this procedure. I'm praying that this will work for you. Samantha
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