thank you for all of the information; it is overwhelming I must say.
One of the treatments that people are mentioning i have never heard of before: tCDS?
as far as Ketamine, unfortunately, insurance doesn't cover and we are the kind of people who live on a budget (a really tight one). That sounds horrible doesn't it, but one thing our family is learning through this process, that is the hardest reality of all, is that life has to continue along side this horrible illness. We all just want to help husband/dad/best friend get better, but realizing our limitations is truly maddening and humbling all at the same time.
Anyways....
Yellow, I would love to hear about how your trial went and down the road what kind of plan your doctor has for after the implantation. i know that my husbands doctor is absolutely insistent about him continually using his arm, even when it is hard to do; so physical therapy will be very important once his pain can be reduced to where he is at a functioning level. I don't tink of the SCS as a stopping point, just a bridge to the next process of treatment.
Best Regards,
MrsBatman

You are right, the SCS is not a cure but rather a treatment. Patients have to go through a psych evaluation for insurance purposes before the trial, and this is an analogy that the psychologist shared with me. She said to think of the pain while the SCS is on like a tree in a snowstorm. The tree is still there and you can still see it, but it is a lot harder to see through the snow. The stimulator helps to block the pain signal to the brain, so the pain is less intense.

Having an SCS can make physical therapy easier to do, and a person should be able to accomplish more with it. I have been in physical therapy since May (and a total of 19 other weeks over a few rounds before that) so you can see that my doctor feels very strongly about it too. I owe so much to physical therapy and a great therapist, I have been able to accomplish more than I could have imagined, my progression of the RSD has been slowed, and I feel better walking out each time than when I walked in. After the surgery I am pretty sure my doctor wants me in PT at least for the first 6-8 weeks, which is the average time for the leads to become more secure. During this time it's no bending or twisting of the back, no lifting arms above the head, and no lifting more than 5 lbs.

If you'd like to read a more detailed description of my trial, I have this thread over on the SCS/Pain Pumps forum, that I have been updating during my experience: http://neurotalk.psychcentral.com/thread157880.html . Checking out that forum you will also find a ton of great information and really helpful people, I definitely suggest making your way over there!

I just wanted to post an update on my husband's RSD/CRPS type 2 in his right arm only. This morning he underwent the trial procedure for the Boston Scientific SCS. He had immediate relief. We are home now and he is very sore at the incision site on his back but it was unreal how much relief he had (no pain meds/muscle relaxers since yesterday afternoon, as he wanted to really feel what the device would do) I could look at his arm and visibly see less swelling, redness, etc. within a half-hour after the placement. We know that this next week will be the true test as he tries things that he hasn't been able to do for a while. Mostly I wanted to post this to encourage people. I know it doesn't work for everyone, there are risks, etc. but today, PRAISE GOD, we are VERY encouraged that this will be a good plan of treatment for regaining use of the arm in the months ahead.
Also, the rep from Boston Scientific was really patient and informative. She teared up a bit too at my husbands reaction to being pain free for the first time in 2 years, which I am sure endeared her to me further.
MrsBatman

I'm so happy to hear that it's working for your husband! I have had my permanent implant in for 4 weeks on Thursday and I'm so grateful for the reduction in pain that the SCS has brought me. I have also noticed a decrease in swelling and redness of my knees that has lasted too. I can completely relate to your husband, it is an amazing feeling!!

This week during the trial, try to have him do regular activities as much as possible, which it sounds like he's planning on. It'll really give him an accurate assessment as to how well the device works in regular life. I also found it helpful to keep a pain diary during the trial.

Let me know if you have any questions

Thank you very much! God is good!

He has been keeping his pain journal and doing 'regular' stuff as much as possible. I do have a question or request for advice from you (or anyone who has been in this place), how can I help him during the time between the trial and permanent? I know to have the relief and then it be gone could be a little maddening; he is a glass half-full guy though and I know he will focus on the light at the end of the tunnel; i just didn't know if there was anything I could do to help him through that time.

I would say, based on my experience, that the best thing that you could do for him is to just listen to him when he wants to talk and let him understand you know how hard it is for him. It is a hard time, finally finding something that works for you and then having it taken away. Focusing on the light at the end of the tunnel is a really good thing. I was fortunate enough to have one person who really listened and let me talk and it made a difference in coping for me. Also maybe you can do things like get areas of the house ready for him in advance together? Hopefully he won't have to wait too long in between and can get the surgery scheduled quickly!

Well here we are a few months later and my husband had the permanent implant. surgery had a very painful recovery but he is at 90-100% pain relief. he says the coverage is getting better and better every day as the leads heal in place. I just wanted to encourage those who may be considering a trial.....I have my husband back!!!!!!! I would say that the withdraws from the pain meds were probably the worst part of his recovery this far (outside of the first few days after surgery). But as he says, it is nothing compared to the RSD...and the withdraws and pain from surgery will go away...RSD pain never did as you all know.

on a side note, the doctor the diagnosed his RSD and directed us to others who could help was Dr. Michael Vandenberg in Pensacola, FL. He is a Rheumatologist (sp?) and a truly caring soul.

God Bless you all!