Hi there ...

Nice to meet you Dawn.

Have they not suggested maybe a paddle lead be better for you? I know when I had my first leads the sensation went down both legs and between them ... and sadly, not in a nice way.

I just couldn't use the stim at all .. so when I next saw my Surgeon he suggested the paddle lead .. it was BRILLIANT!

It hit the spot totally ... then I got an infection. Despite two weeks in Hospital on PIC line anti biotics, the infection came back and they had to remove everything ... my battery, leads and the paddle lead in my spine.

They tried again last December to place the paddle lead back in my spine, taking even more spine away, but unfortunately it was was far too risky to carry on.

I was devastated - utterly and totally. That, for me, was my last hope and I hid away at home taking all my meds and becoming increasingly depressed.

You're in the right place for support .... we all have our moans and groans too and they don't just have to be about the SCS ..

Welcome.

Thanks for your words of support Saffy......I am so sorry you too have not had success with the SCS. I may have permanent injuries from the stim and will never try it again.

If the docs knew what went wrong, and a way for it not to happen again, I might consider it. Because the trial took away ALL my pain. It is very depressing after yrs of debilitating pain, to have that week of being pain free, and the promise of more pain free days ahead. And then to have it taken away and worse than before..

Wouldn't it be great if a spinal surgeon read our posts and and said, "Step into my office because I CAN help you"

You hang in there too Saffy

I too battle back spasms! They started when I had a migrated lead removed. I know how horrible they can be and how it can affect every aspect of our life!
Do you take anything for the spasms?
My doctor has me on Baclofen (I'm not convinced it helps alot, but maybe some). There are other muscle relaxers that might help.
I also have Klonopin on hand, and it works when things get pretty bad.

I just hate it that you are suffering so much!

Rae

I just knew you would come along and chime in with very helpful stuff!!!
Yay

Hi Rae......it sure is freaky, the muscle spasms. First they start as a vibration in the back,... As they get stronger, they move around the chest and totally encompass it..................
That's when the shakes start, like shaking chills.........and they vibrate and sometimes jerk down the top of the arms, butt and thighs.
Then,....man oh man, some one turns on the furnace and I am suddenly 105 degrees.................of course, then you sweat, and when the sweat starts to cool.........
bamm! You start getting cold and the spasms get even worse.....it's a nasty cycle.
I have tried Baclofen, Soma, Robaxin, Flexeril, Valium, Amrix, Tranzene and Xanax.................the only one that helps is the Xanax. It takes the edge off. I tried Klonopin too.
What works best is sitting in a hot bath tub or using heat packs with the Xanax.

I do believe it has something to do with the wires stabbing the chest wall...
Hopefully some day it will heal..........you are so right, when you say it takes over your life........
Thanks for being so kind....
Dawn

There is another thing ... called a Dorsal root Ganglion http://www.dovepress.com/getfile.php?fileID=12054

It's a little like a scs but based lower down as they cannot get into my back any more.

I am seeing the surgeon on Thursday so will see what he says. It's a VERY new operation and they don't know the long term effects .. i.e. I would be a guinea pig .. weeep weeeep.

I'm open to anything at the moment.

Poor Saffy!

I'm so sorry. What are the possible effects if it doesn't work?

I remember you couldn't get your scs. I felt(and still feel) terrible about that.

I wish you luck. I have never heard of it, but I don't blame you. I would want to do anything to stop the pain!!

TK

Oh durrrr I should read better. I see what you said about long term effects

always praying for a miracle
and for you i'll do the same
a heavy cross to carry

someone who cares

If I'm worse off than I am now, it's God's will ... But it's been put forward for me to try .. Again, God's will.