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-   -   Newbie To This Forum (https://www.neurotalk.org/scs-and-pain-pumps/128216-newbie-forum.html)

b.lynne 07-16-2010 03:43 PM

Newbie To This Forum
 
I'm so glad I found this site. I have just been approved for my SCS. I have been a CP suffer for almost 7 years now, on and off 28 different types of medications. I have DDD with minimal pain in my lower back and intense daily pain in both legs. I have been reading a lot of the posts here, what a great group of people you all are!

I am excited and terrified all at the same time about my upcoming procedure. I have done a lot of research about the do's and don'ts. Can anyone fill me in on what I should expect during the trial run and the initial procedure? It would be greatly appreciated. My doctor and rep have filled me in, but I would like to hear it from someone who has been on the other end of the leads. Thanks so much for your input.

Leesa 07-16-2010 05:11 PM

Hi ~ The trial and the final implant are a cinch. I was put in "lala land" and didn't feel a thing and didn't KNOW a thing. LOL It was over before I knew it.

During the trial, I was given restrictions. For instance, I was told I couldn't bend, lift, twist, or put my aerms over my head. Plus I was given a lot of other restrictions to the point that i didn't get a good assessment of pain relief. By that i mean that when I got the permanent implant and went about my normal routine, wow ~ the pain was awful. Even if i turned the unit up, it still didn't cover the pain, it only irritated things more. So when you have your trial be sure you do your normal things as best you can so you'll know if it will cover your pain.

They implanted the "generator" in my side, above the waist. That way my pants didn't rub on it. Some people have it below the waist, kind of in the buttocks. I didn't want it there, as the pants would push on it all the time. It turned out that I didn't have enough fat content in my body and the darned thing tried to work itself out of me. After 6 months I had to have the whole shebang taken out, and believe me having it taken out hurts alot worse than having it put in due to scar tissue. I still have sensitive spots in my mid back and in the generator spot and this was 12 years ago.

If initially you don't feel the relief in the right spot, it can be reprogrammed. In fact, they can reprogram it many many times, so don't panic.

I hope this works for you. Contact me if you have any further questions. God bless and good luck. Hugs, lee

Mark56 07-16-2010 05:25 PM

Hi B
 
Hello B, and congratulations as to your selection for implant Trial. That is quite a step. You have done well to fit the criteria; that is, if you doc is conservative as mine and recommending only those whom he believes have a good chance for a positive outcome.

I have written a good deal about the whole lot of this procedure from trial through permanent implant just over two weeks ago. That discussion is found at http://neurotalk.psychcentral.com/thread117854.html

My thought having been through it, even though the doc changed things up on my at the Trial stage from the St Judes ANS EON mini to the Boston Scientific, is that I could have done NOTHING BETTER for my life than to proceed with this implant. It has reawakened joy in my life. I have hope, a hope that has become infectious and touched those who surround me. This is going to turn out wonderfully for my family, and I have EVERY HOPE for YOU!

If you have questions beyond anything I have already written, let 'em fly, and I'll do my best to bring meaningful responses to you. In the meantime, I hope you find taking a look at the thread helpful.

Best of luck!
Mark56 PJ :)

Rrae 07-16-2010 10:47 PM

Welcome B!
 
It's great to have you on board!! You'll find so many wonderful people here.
We're a fun bunch, who in spite of our pain issues, just try to get thru the days the best we know how.......so....:o if you have a silly sense of humor, that will certainly work in your favor.....:p...also it helps to keep the jitters at bay, as we are all well aware of the gammet of emotions it is to go thru this procedure. We just choose to stay on the 'happy' side the best we know how.
But even when we have a 'bad' day, this is a great place to vent. We all know the realities involved, so we embrace every emotion and build off one another's strengths.

When i read where you describe your pain, i immediately felt a sigh of relief!
The SCS seems to work Wonders for the lower limbs!! Mine has been a God-send for my peripheral neuropathy in both legs.....PLUS it even covers my lower back, which i was grateful for and didn't even expect that!!
I would place a good wager that the odds are in your favor by a longshot.....
you will have a successful outcome. :)
What I'm beginning to realize, is the hardest part of the whole thing is the waiting! http://dl3.glitter-graphics.net/pub/...wc11ro40lj.gif once you get a taste of the pain relief from the trial, and to have that taken away from you and have to wait several weeks to get your permanent...

The main things that i would focus on right up front is,......do you have a good working relationship with your Dr and do you feel he is confident and well-versed in these procedures. Hopefully he's very experienced and is looking out for your best interest as opposed to getting his nice kick-back of $ from this high dollar procedure.

Anyway, it will be great getting to know more about you and you'll soon see that we are a great team and truly empathize with each other.
This IS a big deal, but you're doing it to get your life back, and there's a great chance of that happening for you......

Glad you've found us! cuz chances are, we'll learn from YOU as well!
Rae
:grouphug:

b.lynne 07-19-2010 04:00 PM

Thank you all for you replies. Mark, I read you thread. Thanks for the good cry and all the wonderful information, I needed both. It is such a comfort to me to know that there are others out there going through this. The waiting game on scheduling my trial procedure is starting to get to me. I do have a very good relationship with my PM doc. I do believe he has my best interests at heart. He's already proved that by going to bat for me on getting the SCS trial.

BTW, I'm not worried about the thingy trying to work it's way out of my body because there's not enough fat to hold it in. I have plenty of chunk to keep in place. If fact, I'd be glad to share some if anyone needs it. :p

Thanks again, I'll keep you posted.


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