NeuroTalk Support Groups - considering spinal cord stimulator

NeuroTalk Support Groups (https://www.neurotalk.org/)

- Reflex Sympathetic Dystrophy (RSD and CRPS) (https://www.neurotalk.org/reflex-sympathetic-dystrophy-rsd-and-crps-/)

- - considering spinal cord stimulator (https://www.neurotalk.org/reflex-sympathetic-dystrophy-rsd-and-crps-/113158-considering-spinal-cord-stimulator.html)

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

Quote:

Originally Posted by hannah1234 (Post 615434)

Yes, you can use microwave, and go through detectors. I actually was at the airport last month and went through the security and didnt even beep!!!! wow that was nice i didnt need to get the pat down... the trick is turn the SCS OFF before going through!! :)

I used to be an avid volleyball player and i did yoga everyday. I still do yoga except just in modifications. It will take about 6 months till you can bend alot without having to worry... but now i do normal yoga classes and unless i feel the cord pulling i can pretty much do everything. the only thing I am limited to is alot of poses on my hands (downward dog). My wrist is not strong enough for that... but everything else in yoga I can do. We cant do roller coasters... any sudden jerky movements... and yoga def is not sudden or jerky. My dr actually recommmends pilates and yoga to keep the muscles limber and stretched from spasms. I need to get into the routine of going more often though :) Any other questions?? Also, my incision site is on my right hip... i recommend putting it on the OPPOSITE side that you normally sleep on... yeah... learned the hard way.. :) Any other questions?

This is very encouraging!!!! Thank you!

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

bump -another SCS info thread

Considering SCS - TRY CALMARE PAIN THERAPY 1st

Quote:

Originally Posted by sukadog (Post 615410)

Thanks so much for your response! I'm very sorry that it was such a terrible experience on top of the pain and frustration of the original RSD. I hope something helps relieve your pain. Thank you.

Hello, I highly recommend trying Calmare Pain Therapy (Scrambler Therapy).

There is a clinic that does this in Florida, so you are lucky as it is new to the U.S. My daughter and two other people we met via networking successfully had the treatment. All 3 were suffering from RSD/CRPS and have been pain free since the treatments. One person had her SCS removed prior to treatment as the SCS wasn't working well. **. We were skeptical at first as it almost sounds too good to be true after all we'd been through, but now consider it a medical breakthrough! No more blocks, no more drugs, no more pain!

Do yourself a favor and look into Calmare. Good luck.

Carol