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Topic: DBS Update (Read 1280 times) |
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CHTom
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Three weeks after the voltage in my DBS device was increased to 5 volts, back in April, I have not had a single bad CH attack. I get the occasional 1 or 2 level attacks, which last for about 1/2-1 hour, but that's it. I can now drive without pain, read without pain and write without pain. It has been about 6 weeks since I had my last bad attack and my use of medications is virtually zero. Unless this is just a remission, which I doubt, I do believe that my days of excrutiating CH pain are over. It has been almost one year (Sept. will be one year) since I had my operation; this falls in line with the reports of the 40 or so other people who have had this operation. I have to continue to keep the battery in my chest and have it replaced every 2 years or so for the rest of my life, but that is a minor inconvenience compared to the suffering and loss of quality of life due to the pain. For those interested, I'll post how I am doing from time to time. I recommend this operation to those suffering from severe, chronic CH pain for which nothing else has worked. Contact me if seriously interested and I'll give you physicians' contact information.
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Sean_C
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Thats great news Tom  Definately keep us posted too.
Sean........................................
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MJ
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Re: DBS Update
« Reply #2 on: Jul 2nd, 2006, 9:53am » |
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Hope it lasts forever Tom.
keep us posted.
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MJ
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kayarr
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Re: DBS Update
« Reply #3 on: Jul 2nd, 2006, 1:20pm » |
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Tom,
I feel so much joy for you! You are so brave on many levels!
My fondest Regards,
Kimberly
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Nothing is impossible! Just believe!!!!!
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Guiseppi
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Re: DBS Update
« Reply #4 on: Jul 2nd, 2006, 2:14pm » |
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Jealous as all get out and happy as hell for you. I hope it spells the end of the beast fight for you.
Guiseppi
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Why are all sensors, seeking intelligent life, pointed AWAY from earth?
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Sandy_C
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Burn that bra!
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Re: DBS Update
« Reply #5 on: Jul 2nd, 2006, 4:31pm » |
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Congratulations Tom. Hope it keep working for you forever!
Sandy
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Lean on me when you're not strong
And I'll be your friend
I'll help you carry on
For it won't be long
Till I'm gonna need
Somebody to lean on
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E-Double
CH.com Alumnus
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Are we ourselves?
 
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Re: DBS Update
« Reply #6 on: Jul 2nd, 2006, 6:33pm » |
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I can't believe that I have to bang my
Head against this wall again
But the blows they have just a little more
Space in-between them
Gonna take a breath and try again.
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Bob_Johnson
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Re: DBS Update
« Reply #7 on: Jul 2nd, 2006, 7:13pm » |
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Neurol Sci. 2005 May;26 Suppl 2:s138-9.
Deep brain stimulation and cluster headache.
Leone M, Franzini A, Felisati G, Mea E, Curone M, Tullo V, Broggi G, Bussone G.
Headache Centre, C. Besta National Neurological Institute, Via Celoria 11, I-20133, Milan, Italy. leone@istituto-besta.it
In recent years, neuroimaging data have greatly improved the knowledge on trigeminal autonomic cephalalgias' (TACs) central mechanisms. Positron emission tomography studies have shown that the posterior inferior hypothalamic grey matter is activated during cluster headache attacks as well as in short-lasting unilateral neuralgiform headache attacks with conjunctival injection and tearing (SUNCT). Voxel-based morphometric MRI has also documented alteration in the same area in cluster headache patients. These data suggest that the cluster headache generator is located in this region and leads us to hypothesise that stimulation of this brain area could relieve intractable cluster headache just as deep brain stimulation improves intractable movements disorders. This view received support by the observation that high frequency stimulation of the ipsilateral hypothalamus prevented attacks in an otherwise intractable chronic cluster headache patient previously treated unsuccessfully by surgical procedures to the trigeminal nerve. So far, 16 patients with intractable cronic cluster headache (CCH) and one intractable SUNCT patient have been successfully treated by hypothalamic stimulation. The procedures were well tolerated with no significant adverse events. Hypothalamic DBS is an efficacious and safe procedure to relieve otherwise intractable CCH and SUNCT.
Publication Types:
Review
PMID: 15926012
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Bob Johnson
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Kris_in_SJ
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Re: DBS Update
« Reply #8 on: Jul 2nd, 2006, 7:55pm » |
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Congrats Tom!
I recently saw a segment on how DBS is help certain Parkinson's patients as well.
You are a true beta tester for the chronics here. Hope this continues to bring you long term relief. keep us informed.
Hugs,
Kris
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I'm a small woman in small town being chased by a VERY BIG BEAST!
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