Hope, he wanted me to be as active as possible, I guess so he could get an idea if the leads would stay put long enough to scar in; i.e, if they move during 3 days of active movement, how likely is it they are NOT going to move during 6 weeks of even minimal movement?

He doesn't want to go with the pain pump, although if this fails I may press him harder. He says there are risks, and he thinks I'm still too "functional" for it. LOL, I still have some pride and always shower and put on decent clothes when I go to the Dr. I should just go looking like I usually do, in sweats, dirty hair, straight from bed, maybe he'd get the picture?

I swear there's a special place in you-know-where reserved for WC and insurance co people!!

Jo, the leads will be tied down to gristle (ewww) but can still move quite a bit side to side I guess. There's a procedure called a laminectomy where they open the epidural space and stitch the leads down, but it's rarely used (spinal headache of the worst kind is guaranteed) and is contraindicated for RSD patients.

SCS stands for spinal cord stimulator - it's placed into the epidural space and runs up into the the processing center at the base of your skull, the leads are placed in contact with the area that sends messages to the place that's desired, in this case my hands, arms,shoulders and underarms. They will also make a channel for the wires down my back to the battery, which will be placed through an incision into my upper butt.

The Dr doesn't want to do all this surgery on me if there's a good chance it won't work. I want the surgery to work in the worst way!!!! I just don't know if I can bear coming to and being told the surgery was a failure, you know?

Beth, I'm so sorry to hear this.

It just seems so 'experimental'... the reason why I won't consider a SCS implant (yet). I can understand wanting even a partial relief of pain, but to have muscle cut into (implant at hip) and wires inserted that can dislodge, too scary for me. I'd not have the procedure. And not only because of the fear of the big let-down if the procedure didn't work, just the stress of being 'knocked out' after having had so many other procedures. Then the RSD issue... oh my honey, I'd be too scared.

Regarding the adhesions, did you not have an EMG-C8 nerve root test done? I've had 3. Could there be adhesions there from this procedure?

Anne

ps: thanks for the kind words and inquiries on my situation. LTN is a possibiliy. will start a new thrad for that. don't worry all.. it will be rated G.

I wish I had some advice to offer, instead I can only lend support.

I know this is probably a silly question, but is there someone else that you could see for a second opinion??

I think I have told you my hubby has an interthecal pump to manage his radation burn from his cancer treatment. It is very effective, not completely but he was in agony prior, bedridden and miserable. At least now he is mobile and able to get out and about!

They had him barely moving for 1 month post op. to allow the pump to scar in. That was really emphasized!! Also, He could tell once it scarred in. It felt more stable, more secure.

Is there any possibility they would consider that for you?? I myself would consider one ( if I needed that kind of pain management) after seeing how much relief he has had from his.

I hope you will be able to come to a decision soon and be able to get the pain relief you desire and deserve!!

G~

My heart goes out to you with such a huge discision to make.. No one can make such a descision but you.. And I am sure that in your heart you will make the right one whatever the outcome is..
If I had to go thru such a desicive surgery and counting my options and to look down the road into my future.. I would go thru with the surgery and have the Dr do the best he can.. It is always possible that everything will go as planned and if it doesn't and he goes higher it still may help..
I will keep you in my prayers that this will work for you..
Best of luck and keep us posted..
((Gental Hugs))
Dawn