Seeking advice on SCS Trial
 

So, anyone who can "chime in" please do.
I'm set for trial on July 8th.
I do also have another follow up with Dr. & St. Judes Rep. before trial so that'll be my last chance for questions.
I've been reading about the acronym no "blast" but now I'm wondering on the details.
For example: Bending - brushing your teeth over bathroom sink? Lifting: what limits?
Stretching - can you reach into say a regular type washer &
dryer?
Twisting - How do you make sure you don't do that in your
sleep and how do you get out of bed.
Getting and out of vehicle? How about having your back against a seat or chair?
Mine will be placed in lower back and then go all the way up to shoulder area as my CRPS/RSD in in my left hand and arm.
Can you wrap the site in cling wrap and tape it up and quickly "shower"?
I'm really scared to do this and I've read a lot of everyone else's stories here.

Along a different thread I'm also dreading feeling like a "burden".

When I had my trial in I was in so much pain from the site where they placed it I could barely get out of bed, so I didn't have to worry about doing too much. You are not allowed to take any kind of shower. Just sponge bath. I just stood at the sink and bent my neck to brush my teeth but mostly I just didn't do it. :( Mine was for my left leg so I had to be sure that when I "twisted" I moved my shoulders the same time and way I moved my hips. I also laid in bed at an incline and put pillows around me to try to keep me from moving. Mostly just take this time to relax. I was NOT able to reach into a washer or dryer. Be sure to lower yourself onto your bed or a chair slowly. Basically just move slowly. If you have anymore questions or want to know more about my experience just let me know. I wish you all the luck with this and hope it works well for you!!! :)

And I also wanted to just say, that I was scared too but just have faith and try to stay positive! :) Even though it didn't work for me this does work for some people, so it might work great for you. We are all here for you. And what is so great about this is it is just a trial. It is a great way to test it out. Even though it was a rough time for me, I am very grateful for the experience and for the chance that I got to try it. :) And about getting out of bed: I would very gently roll to my side then sit up by kinda swinging my legs over the bed.

check out the subform on scs and pain pumps.

http://neurotalk.psychcentral.com/forum118.html

They are a great group of people and would be glad to answer your questions.

I personally had a trial and didn't have a good experience at all. But a lot of people do well.

Good Luck!

Hi Az-Di,

A quick FYI for you in this waiting time - there are two non-invasive treatments that I know of that people on RSD discussion boards have had some success with; you might want to give a quick look at those before your SCS surgery, in case they work for you. My daughter was at the same point you were at - scheduling her SCS - then we heard about the Calmare treatment and tried it and she went into remission. The clinic in Mesa (close to both of us) will not charge for the first few treatments if they don't work. Nothing to lose but a little time! We might even end up sitting next to each other in the waiting room - after 3 months of remission, she just started coming out of remission today (normal and expected) and we will be going there for booster treatments. Also, a mom on another board had really good results for her daughter with H-Bot treatments (Hyperbaric Oxygen Therapy). Both of these treatments are non-invasive, and won't interfere with the SCS if you need to go ahead with that.

As far as the burden feeling - there is still SO much that you can give to others! My middle son was born without legs (he has caudal regression syndrome), and as he got older, it was hard for him to sit by and watch my strong oldest son help people out by lifting heavy boxes and things for them. One day, I told him that although his brother could help people out by lifting boxes, he could help people out by lifting their spirits. That really resonated with him, and he is so sweet and sensitive and good at encouraging people now. Yes, you're going to be somewhat of a burden physically, but you can do a lot for people's hearts and spirits in those times when you're feeling a little better, and that's really important!

Best of luck whichever treatment you decide to go with, and please keep us informed!

I didn't have any problems with my first trial, for my thoracic stim- for rsd of right leg now w/left leg spread. I had a great trial. Great pain relief, I did not have the pain everyone speaks of. I had a little discomfort the first day or two. I went down on meds, could walk well and unassisted for the first time since 2011. When they pulled it, all symptoms came back with a vengeance. Permanent implanted. Had a revision due to a fall. Starting to have some degenerative issues in that area. I think due tithe surgeries and I believe, unfortunately, spread. :( anyhow, the stim. Works great still and covers the pain a lot of the time. It does not do a lot for the swelling and color changes. I have a St. Jude also. I have a wonderful rep, and we occasionally tweak. I have had some leg issues lately that we can't tell if it is rsd spread or another problem. I was walking almost perfectly until April of this year when I had seizure. That's another story.
Timeline for Thoracic Stim St. Jude Eon
Trial June 2012
Implant July 2012 T8
Fell September 2012
Revision October 2012-moved down to T9 great coverage.

Cervical Stimulator- this one was a little dicier. I also have rsd in both hands. It has always been more positional and the blast was always more difficult due to your neck almost always moving!! Anyway, I had the trial and the permanent done a week apart. I also had a second surgery on this one due to the battery never scarring in properly. This one's coverage is all right. Not as good as the leg one, but still nowhere near as positional as I thought. Here is the timeline for this one.
Cervical stim st. Jude eon
Trial Feb 27-March 6 2013
Permanent implant march 13, 2013 C2
Battery surgery June 12, 2013

My experiences have both been good. I have great relationships with my doctor (pain), surgeon, and rep for St. Jude. Some things I would keep in mind for trial

1. You can't bathe-I had my hair washed at Walmart. That was nice.
2. I used those cloths and baby wipes.
3. I took really good notes about pain, how much activity I could do, if I could decrease meds
4. If you aren't feeling coverage where you need it, call the rep. My cervical lead slipped and I had to have a reprogram for my cervical trial.
5. Don't be afraid to rest. I was almost overdoing due to feeling less pain.
6. Be careful about twisting and lifting. Those leads are not very secure. As I said, I slipped one of mine.

I can give you some tips for the perm also. I have two and can still tell the tale. I hope things go well!! Lots of luck. If you have questions, feel free to message me!!

TK

:hug:

That walmart idea is great! Also, it's so true - you have to be careful about overdoing it when your pain lessens. It's so tempting! There's just so much that we can't do, then when we're feeling better, we want to do everything!!

could be better than you think
 

I also have a scs from St. Jude. I had a really great rep that was always available for my calls to answer questions and concerns. I could tell you the pain was minor at first, but it hurt like the devil the first couple of days. Don't be afraid to ask questions or voice concerns. My trial went so well that I had my unit installed last October. Thanks to how well it worked for me I can now work full time. I rarely have to take time off due to the level of pain. Just remember what works for one may not work for someone else, but if you do have an intense level of pain it's so worth doing the trial. I wish all of us the best of luck!

Hi Az Di,

I'm hijacking your thread for a SCS related question, because it looks like a few of the SCS "success stories" have posted here......or perhaps you know the answer yourself from the research that you've done.

I've heard that the principle of the SCS is like an implanted TEN's unit. When I'm having more mild to moderate pain, I might have it set on 3 or 4, turning it up further is too strong for me then. When my pain is severe, I crank that baby up to 10 AND up the meds AND use ice AND have to lay down.

How much "stim" do they set a SCS for, for each person ? I don't mean, "Do they set mine at an X and your's at a Y ?" I mean, "Is it set to manage my 4 to 6 pain or my 8 to 10 pain ?" Does it manage just baseline pain or can it also stim through a typical RSD pt's daily exacerbations that come with activity ?

The SCS is the one possible treatment for RSD that really scares me because I've heard so many horror stories and no long term success stories (not saying they don't exist, just that I haven't heard about them). Hopefully, im4 and tkay, will continue to do well and become long term success stories...... And teach me to rethink my SCS negativeness.

I wish you luck with your trial and whatever long term treatment you have. I would just proceed cautiously.

Actually, yes finz. I have programs for moderate pain, programs for severe pain, and one for "absolutely unbearable" pain. I also have three cycling programs for my thoracic (leg) stimulator. I choose one for sleeping, one for good days, bad days, etc. I know it probably hasn't been long enough to consider me a success story, but it has helped me so much. I am being tested for other neuro disorders at the moment. My cervical stim is the same way, but the parameters are so much smaller that it's hard to adjust sometimes. I've had some issues, but no horror stories. I fall a lot, and it hasn't dislodged a lead since October. I've "learned" to fall sadly. Anyway, hope this helps.

TK

:)