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Topic: Deep Brain Stimulation in the US-UPDATED (Read 3491 times) |
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LeLimey
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OUCH-US - Less "ME" and more "WE"
 
 
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Re: Deep Brain Stimulation in the US-UPDATED
« Reply #25 on: May 18th, 2006, 5:50pm » |
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Thanks for checking it out unsolved, its quite scary how evasive he seems to be 
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The arsehole I'm divorcing needs to get a life and stop stalking mine
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zuesthedog
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dont give up dont give in
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Re: Deep Brain Stimulation in the US-UPDATED
« Reply #26 on: May 18th, 2006, 6:10pm » |
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Unsolved, First of all I ,m not real comp. litterate so Quoting above entries and my spelling is anything but great, but I do the best I can. Anyway I am really dissappointed with the response you got from Dr. Mandybur. He was one of the most personable ,friendly Dr. I have ever dealt with. Maybe you caught him on a bad day. As far as past history on this procedure. I believe I am the first and only one to have this done. As I stated before it working great for me. I took a chance having this done, but it was better than the other procedures which you pointed out leaves your face paralysed ?? . Its going to take other people to do it to be able to develope a track record.If anyone else attempts to contact him I would suggest using the phone over email, I believe you will get better answeres. Well keep up the good fight.
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zues
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MJ
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Re: Deep Brain Stimulation in the US-UPDATED
« Reply #27 on: May 19th, 2006, 3:38am » |
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on May 17th, 2006, 11:21am, CHTom wrote:
Prior to my surgery last September I would get hit with several 10 level attacks daily, lasting from 1-4 hours each; every once in awhile the pain would go away and I would have one or two periods without any pain during a week which usually lasted for about 1-2 hours, then I'd get hit again, usually moving very quickly back up to the 10 level. Things are pretty much the same now; on weekends and evenings, if I stay in bed, don't read and keep the lights low or out, I will sometimes have a relatively peaceful weekend or evening, but if I go out and drive, then relatively soon the pain will return aat a hgh level.
When I had my one year spontaneous remission back in 2001-2002, I was so happy-I didn't have to worry about the sun shining in my eyes, I could read all that I wanted to, I could drive as far as I wanted to, it was like being reborn; when the pain returned in April of 2002 I was so depressed
Now if I could just find a woman who would be able to put up with me and my CH, life would be much more tolerable. I've just moved to a new location due to my work, so I'll think positive. Human companionship, whether it be girlfriend, wife or just a friend, makes things much more bearable.
I hope that I've answered your questions;
writing is theraputic for me and I hope helpful to you and anyone else who is considering DBS.
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Thanks Tom you did answer my questions.
As one who suffers pretty good in cycle I can understand why you elected to have the implant.
I was prompted to read about a thousand pages on the DBS method.
Its amazing the variation in studies and reports on line.
All claim this an area of potential for CH. While inserting disclaimers of one sort or another at the same time.
Those that perform the surgeries for the most part claim very high success rates. Yet their data seems to only show history for 2 yrs or less.
Those that do follow ups claim very low success and their data shows more time.
I understand this procedure has not yet been widely used for CH and is fairly new and historical data is minimal.
Even among the insurance co's the reports vary a lot, some allow and even suggest it while others indicate its no good or unproven.
Some of the successes for other ailments (parkinsons, etc..) using the deep brain stimulators sound pretty promising though.
One interesting point that sticks in my mind from reading was somewhere i read of those that claimed success the pain levels were in the level 3-4 range of 10 on a pain scale prior to the DBS implant. (Insert your own assumptions here)
From what I read and for those of us with high level frequent pain I would go for the good woman even knowing that they can cause a constant pain and are not allways tolerable.
At what point do you decide the DBS is no longer worth the effort? For your sake I hope it starts to work soon.
I had been seriously considering having the nerve cut or removed during one of my previous 3 year cycles, allmost did it myself a few times. Glad I didnt though as the results sound similar to DBS.
Hang in there my friend your PF time will come again.
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MJ
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LeLimey
CH.com Alumnus
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OUCH-US - Less "ME" and more "WE"
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Re: Deep Brain Stimulation in the US-UPDATED
« Reply #28 on: May 19th, 2006, 4:18am » |
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on May 18th, 2006, 6:10pm, zuesthedog wrote:| If anyone else attempts to contact him I would suggest using the phone over email, I believe you will get better answeres. Well keep up the good fight. |
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If anyone who contacts the doctor gets better info over the phone than in writing I would suggest they run and not walk to just about anywhere else.
Frankly, if someone isn't prepared to put his claims in writing where they can be quoted then you have to question the validity of those claims.
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The arsehole I'm divorcing needs to get a life and stop stalking mine
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