[ sukadog
My husband has rsd in left arm/hand. He had a scs implant in Dec. He has no regrets. I have seen some on here that it was not successful and others who have had it for many years and love it. My husband is off all his pain meds, however there are limits to what he can do (not lifting over certain weights, not lifting things over his head). He feels it was the best decision for him. The pain meds restricted a lot of things he could do anyways, as he didn't really get great relief from them and they goofed his head. Each person has to decide what they are willing to live with and what gives them the best quality of life. I wish you the best!

Thank you so much! That's very encouraging and I'm glad it's working for him. Can you tell me a bit about precautions: whether he can go to stores that have theft detector gates? Can you use a microwave at your home? I know these are silly little things compared with the possible benefits; I'm not concerned about giving anything up, but about whether little things can interfere with the device. Thanks again!

I have had an SCS implant for my left foot since 2003. Everyone's results are different, and I was 1000% sold on it when it first went in, but after a short while, the effectiveness ore off. I was told that happens sometimes - that the body "rewires" itself to get past the SCS stimulation and you go back to the same ol same old.

I can tell you, though, that the precautions you asked about are minimal. Microwave ovens are not a problem, nor are regular stores. I always (as a preventive measure) turn off my stimulator when I go shopping, especially at a mall where I will be in-and-out of stores a lot or if I will be going to a jewelry or leather goods store where they have their security cranked up a bit.

I have heard that some people leave theirs turned on while shopping with no problem.

I never allow the airport security to use their wands on the stimulator (or make me walk through the hoop.) I always ask for a hand-screening. The biggest chance of any problem would be damage to the unit, and then trying to get insurance to replace it. (Not to mention another surgery.)

Good luck with your decision.

Mike

I had a scs trial done last month. I have the little monster in my right leg, foot, ankle and now hip. They tried to use two different leads, one for the ankle foot area, and one for my hip. This didn't work for me. I tend to have problems when it comes to anything vibrating on my leg. It really doesn't matter what it is, be it from riding a lawn tractor or driving. So making a long story short it didn't work out for me. I couldn't control the vibrations and it turned my foot and ankle purple. I guess I'm just an odd duck. I hope and pray that you will have a better experience with yours. I would recommend an scs trial for anyone that knows their doctor is competant. I just ran into a very money grubbing one.


krank

I've been reading, and even tho my back is sore from surgery, I just had to add my 2cents worth. As you know, I have had 2 units. It did, for me, cause the rsd to spread. I loved the trial, but never was happy with the perm. THe first one I had, the leads pulled out, and the battery started to rotate and caused a lost of pain. I now have the pain pump, and I'm the happiest I have been since I developed this monster 5 years ago. I had the trial in Dec 1st. in hospital for 5 days. That's when we discovered I'm allergic to Morphine. (good thing to know). They switched me to Diluidad which worked great. I now have the perm unit and it only involved a small cut in my back where they put both the caths and the resivouir. I'm off all oral meds except for percocet which I have for surgical pain. I've had no problems at all and I feel almost like I did before the rsd hit. With the scs I was told I couldn't ride my horses, had to be careful doing barn work, etc. with the pump, I can do almost anything. I do thing bungie jumping is off limits. As there are no leads to pull out I don't have to worry about doing everyday things. for me, everyday things, include riding my horses, running around on the tractor, lifting 50 lbs feed bags and 80 lb bales of hay. I was not going to be able to do any of that with the scs. I'll be riding by summer. yeah..........

Damn.....no rollercoasters !

I know my docs would be appalled to think I've gone on a few since my neck pain issues started, but seriously, the pain was no worse than it is anyhow and those few minutes of sheer joy do something extraordinary for my spirit !

Lost Mary-
question for you. How did the oral pain meds work compared to the pain pump. My husband went thru all kind of pain meds to finally find diluadid worked the best, however he still had considerable amount of pain, enough that limited a lot of his daily activities. He has since had the scs and is very happy, but just wondering if you knew how the pain pump worked vs the oral pain meds. Our scs rep had mentioned if the scs didn't work after the trail, the pain pump would be the next best option in his opinion.

Thanks

I was on Opana 30mg ER. twice a day. The amt of Diluidad that I've started on is giving me the same pain relief as the Opana. THe one advantage is that I'm not suffering from the meds being in any other part of my body. I'm not suffering from feeling foggy headed, and the other organs in my body don't have to keep removing the meds. The ration is abt 1/300 of what you would get in the oral meds. When I go Tue to get the staples out Tue, I'm going to get a small increase, as I want it better then what I had before. I'm so glad that the stim is working for your DH. It worked a little for me, but the buzzing wasn't great and after a short bit the rsd spread and the stim didn't work to help it. I'm glad your rep has mentioned the pump. there isn't any set limit to the meds that can be used. It's 24/7 so there is no fluction of meds. I love mine. I've never felt better or more alive. I can think again, I see the sun come up and I'm excited for what I will be able to do again. I'm horrible at waiting, but I'm being good during recovery so I will heal. I found the recovery from this surgery was sooo much better then the stim. I felt great the day after surgery with this. With the stim, I was in bed crying for over a week...actually for both my stim surgery. So if this doesn't work for him, look at getting the trial for the pump. I know ppl who actually have both and each one does what it needs to do. That is a thought.
Hugs
Mary

wow!!! I can't even imagine being able to do those things. I'm so impessed and encouraged! thank you!

Hi Sukadog, I understand how you feel. I started with RSD in left arm and blocks didnt work great so I did the trial SCS and it worked too well-I was unusual, and was getting sensation in my whole body. I thought it was great for my pain but was reluctant because I was very active and afraid of RSD spreading. So I stuck with meds and therapy. Within 6 months my RSD is now considered General CRPS because it has spread to all 4 extremities. My treatment recommendation now is Ketamine coma. I wont do that yet. But I do regret not getting the SCS. I have researched that SCS may work but when they stop working they can cause RSD to spread because your body rejects it. I think I should have gotten it and when it stops working I should have just removed it. As for being worried about not being able to run or stretch, like i thought, well now I have trouble just walking so I am in worse condition. It is difficult to make decisions when you have RSD because you hear 2 sides to all treatments. Who knows maybe my RSD would have spread even with the SCS (then I would thought it was because of getting it). I guess we all have to do reseach and make choices we are comfortable with. Best of Luck with your decision. Keep warm. momof4