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

I have made an Adverse Event Report to the FDA due to the injuries caused by my spinal cord stimulator................the report is complete and online at the FDA MedWatch site....................
I urge all of you suffering from the SCS to file a report. .......
This is the only way the physicians will make an effort to find out why we have debilitating injuries, find out how to help, heal and prevent such horrific damage.................
Send me a personal message and I will be glad to help you file, it only takes a few moments online.
Still suffering after 7 months post removal.....................Dawn G

I'm so sorry yours didn't work and damaged you so. I have two, and I would be lost without either of them. My rep(I have INS/st. Jude's) says they are usually love/hate for my disease (crps now dx full body complete with gastro paresis) anyway, I'm so sorry and I hope your pain eases. My pain levels were off the scale before I had my devices implanted. My dr. Says there are so many factors at play. I got blood clots during my revision. Not everything works foR everyone. I wish you luck. Again, I'm sorry!!

TK

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.

God will bless your health in ways which restore.
Prayin,