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        New Message Board Archives >> Medications, Treatments, Therapies 2004 >> Finally
        
(Message started by: KevinD on Jun 7^th, 2004, 1:13pm)

Title: Finally
Post by KevinD on Jun 7^th, 2004, 1:13pm

I think I found the right doctor. After a 5 month wait to get in this place, this is the right place. Research pays off. I've been researching this electrode surgery and my doc said I am a candidate but she wants me to talk to the Neuro Surgeon first. I made the appt for August. I've been determined to get this procedure done but as it seems more and more possible, I am getting nervous. I just have to remember the hell this causes. I guess I'll know more in August if I can have my brain opened up. Anyone in the Philly area looking for a change of doctors, email be. And thanks for advise from everyone who offered it about Lithium a few months ago. I sincerely believe it saved my life.

Title: Re: Finally
Post by mynm156 on Jun 7^th, 2004, 1:30pm

Thinking that I might have to have sugery scares the hell out of me. Good luck Man!!

Good Vibes

MYNM156

Title: Re: Finally
Post by UN_SOLVED on Jun 7^th, 2004, 1:58pm

on 06/07/04 at 13:13:39, KevinD wrote:

I've been researching this electrode surgery and my doc said I am a candidate

WTF [smiley=huh.gif] You mean ONSI ? (Occipital Nerve stimulator)

on 06/07/04 at 13:13:39, KevinD wrote:

I guess I'll know more in August if I can have my brain opened up.

WTF [smiley=huh.gif] ONSI is minimally invasive ... very little risk. No where's near your brain.

on 06/07/04 at 13:13:39, KevinD wrote:

thanks for advise from everyone who offered it about Lithium a few months ago. I sincerely believe it saved my life.

WTF ... If it is working good, why have ANY kind of procedures ? [smiley=huh.gif]

[smiley=huh.gif] Unsolved [smiley=huh.gif]

PS. A responsible surgeon would not perform this procedure on anyone unless you've already done a whole list of meds and blocks first. Make sure if you do decide to have this done that your surgeon has done this before and is not just looking for his first ~~victim~~ candidate. I would also recommend a 'trial' implant first over a 'full' implant. Goodluck

Title: Re: Finally
Post by don on Jun 7^th, 2004, 2:13pm

The big question I have is are you chronic by definition?

It is also my understanding that even the minimally invasive treatments shouldn't be administered unless all else has failed. Sounds like the Lithium has worked.

Title: Re: Finally
Post by KevinD on Jun 7^th, 2004, 2:23pm

I believe there are 2 types of this procedure, one less evasive than the other. I am chronic and have grown immune to every Med I have tried up til this point. I would be thrilled if lithium will work for the rest of my life. But my past history tells me I have no more than 18 months left of effective lithium usage. Maybe things will be different this time around but I have to be prepared. I'll do anything to avoid the hell of CH. My new neuro agreed that I have tried all the front line meds for CH and there is no point in scraping the bottom of the barrell hoping something MAY help a little. I was just exaggerating about having"my brain opened up"

Title: Re: Finally
Post by UN_SOLVED on Jun 7^th, 2004, 2:30pm

on 06/07/04 at 14:23:12, KevinD wrote:

I believe there are 2 types of this procedure, one less evasive than the other.

Well...I'd sure like to know what the 'other' is. I'm a patient at MHNI and was the first in the US to have the "bi-lateral ONSI" in March. I know of no other simular procedure. The "Deep Brain Stimulation" procedure is NOT available in the USA. As soon as it is ... I'll be the first (guinea pig) for that too !

Unsolved

Title: Re: Finally
Post by KevinD on Jun 7^th, 2004, 3:03pm

I'm def not an expert. I should say that I did alot of research several months ago, so I am going on what I remember. Even at 28 y/o, the memory begins to fail. I take it that your procedure did not work, at least permantly. I'll be right behind in line for the electrical stimulation. These people (Temple U) have done many of these before. They have some type of affiliation with Medtronics, who I believe is the maker of the stimulator. Thats why I chose them

Title: Re: Finally
Post by UN_SOLVED on Jun 7^th, 2004, 4:48pm

Medtronics. I met their representives at Chelsea Hospital and at MHNI. That is the device I tried. You are right, it didn't help me. Maybe you'll have better luck.

Unsolved