[beth]

Yesterday I got the trial SCS implanted, the stimulation is covering both arms from fingers to shoulders, both underarms and some of the scaps. The procedure was a bit uncomfortable due to having to hang my head down over the edge of the operating table the entire time, and because the Dr was unable to insert the leads in the midline of my spine, where there is no sensation, thus no pain. The incision area is still painful today, but better than yesterday, and that pain will be gone in a couple of days.

The BEST news is the SCS is working for me!! I feel little or no pain in my hands and arms, just a tingle, which I can make stronger or weaker as needed. Last night I slept comfortably on my side, withOUT PAIN, for the first time in over 3 1/2 years, and woke up actually refreshed after a good night's sleep!

I didn't know if the SCS would work for me, as it doesn't for everyone, but I prayed it would. Now I wish I'd tried it 2 years ago!!

This is not the Medtronics one but a newer one called Precision from Advanced Bionics, and it's very small, completely rechargeable, with a 5 year guarantee. My Dr says the battery life is actually 9-10 years or more, and he's got nothing but good things to say about it, and he's implanted lots of them.

Last night I went to the first half of my daughter's Homecoming football game, it was pretty chilly and I wore gloves, and my hand didn't once turn that painful, icy-cold. In fact, that hasn't happened once since the SCS surgery. So it's helping with circulation as well!

I get this trial unit out on Monday, to prevent infection, it will be at least 2 1/2 weeks after that til I can get the permanent one in. It will be hard to give this up after having a few pain-free days

But I am VERY HAPPY this seems to be working like a charm!

beth

[Stardust]

This is wonderful news. I'm so happy for you!

[dawn3063]

I bet you are already counting the days to when you are able to have your permanent stimulator implanted.. Pain free days are wonderful.. I'm so happy for you.. Keep us updated on everything..
Your in my prayers..
((Hugs))
Dawn

[tonia]

Hi Beth...
I have often thought how you are going...its so good to hear you are getting some relief and I was thrilled to read about your case...
Take care my friend , I wish you many pain-free days ahead

[Jomar]

that is so great beth!

[beth]

To be honest, this doesn't take away ALL my pain - in fact, the trial leads are quite tricky - in some positions they don't work at all, and then I'll turn my head another way and get a strong "ZAP" down my arms! The rep says it's because they are so unstable - he made a comparison to a spoon stuck upright in a dish of jello - fine until someone moves the dish, or even bumps the table! Once the permanent leads are in, and "scarred" in place, position changes won't make nearly as much difference.

I'm learning quickly, by trial and error, how to change the settings for different activities. When I'm up and active I have the stimulation set higher. Wasn't sure last night how much lower I should set it for sleeping, so decided to get in bed, then adjust it - ZOWIE!!! Felt like I had hold of a live wire - not hot, but electrifying LOL! Could hardly sit up and reach for the remote to turn down the stimulation - I won't forget THAT lesson

The SCS is doing a wonderful job masking most of the pain in my hands, arms, shoulder and underarms, my absolute worst pain areas. I get some relief at the outside and upper edges of the scaps, none in the traps or neck, which are my second-most painful areas, or upper chest/collarbone area, also v. painful. My hips and legs have also been really achy due to sciatic nerve pain, from RSD or DDD depending which Dr you listen to. I think it's RSD because it's on again/off again and I think DDD wd be more persistent, don't you?

And due to RSD my feet always burn, and I have pain to being touched all over, EXCEPT the area covered by the stimulator.

My point is, I'm not completely pain-free, but the SCS HAS taken the pain in my hands, arms and shoulders down to the lowest level they've been since....since I got injured. I haven't been distracted once today by screaming elbows or freezing hands - a first since Feb 2003! And because the pain in my arms is so low, I can cope MUCH better with the rest of it, especially after a good night's sleep - like a gift from heaven.

An SCS isn't a cure or remission, and may not be for everyone, but so far the trial has given me an idea of how much I stand to benefit, and the permanent implant should be even better. I can actually imagine having a better quality of life, being rested, relaxed, not just having lower pain levels but actually being able to participate more in household, family and social activities. I'm pretty excited, can you tell? LOL!

Tonia, I think of you often too - I need to catch up with your news! Is your heart behaving? How are the boys? Please post or PM me, ok?

Dawn and Stardust, thanks for sharing in my happiness, it's sweet of you! Keep me in your thoughts and pray these good results continue, please? I 'm sort of still in that "Pinch me, I must be dreaming" state-of-mind if you know what I mean I know I won't want to give this up on Monday afternoon!

beth

[astern]

Beth, this is fabulous news! Pleas keep posting about the little quirks and nuances of the device. After zara's experience I have been scared witless to try an SCS. (Dr. A says it's my last alternative). I am going to watch you and see how you fare with it over time before I make a firm decision.

Sorry the RSD continues to be an issue...

love,
Anne

[gibbrn]

Beth,

so glad to hear a good nights sleep has been had....my how our brain functions when we actually let it rest!!!!!!! I hope that you keep being as pain free as you can ! My prayers are with you.....all the best...keep up the experimenting!

hugs...gentle ones...
Victoria

That is wonderful news Beth!!

When hubby got his "trial interthecal", which was actually an epidural performed in the hospital and left in for several days his pain was less, but has been even more so since the interthecal pump ;and especially after it "scarred in". Just be sure you give yourself plenty of time for it to "scar." It is hard not to get excited and want to resume life the way it was before your injury; hubby found this out the hard way!!

I'm so happy for you!! Please continue to keep us updated!!

My prayers for your continued Blessings !!
G~

[beth]

Leaving soon to have the trial SCS taken out, sigh.... However the leads have slipped out of the epidural space completely (sometime while I was sleeping) so I'm not getting any stimulation at all today anyway. I don't know if it's because I sleep in strange positions or if being hypermobile could have anything to do with it?? How do some people get 2 weeks out of a trial?

Getting 3 night's good sleep was heavenly And there seems to have been some lingering effect in my hands and wrists as they still feel much better than usual - that's pretty cool. I even drove yesterday with it on (yeah I know it says you're not supposed to - the lawyers put that in for liability reasons, but my Dr says everyone drives with one) It wasn't painful at all, but I had to sit up straight to keep the stimulation working right.
Am anxious to get the permanent one and get it "scarred" in place so I can move about normally without any pain or fear or lead migration!

This SCS is a Precision by Advanced Bionics, I think it's the best one on the market, Lots of advantages over the MedTronics one, and more coverage than the ANS, from the PMs and emails I'm getting from other users. My Dr has put in a lot of them and he has nothing but good to say about them. The rep has been great, called me twice since Friday to see how I am and if I have any questions. The permanent implant will have a guaranteed battery life of 5 years, but Fr says actual is 7-9, and he has seen as long as 12 or more. I should only need to recharge abt every 2-3 weeks as I am at a low power setting.

Gotta run! PM me if you have any questions!

beth