I just don't know how to make a choice like this. I have gotten so many doctor opinions and they are so mixed. This was one of the last things I wanted to do but I also want my life back. I am talking about getting the spinal cord stimulator. I have pn but they think it is more similar to rsd. This is the issue after so many tests and docs it is still a think.Most of my other treatments/meds have not worked or increase pain level. That is my issue is if something goes wrong and I end up in more pain or with more issues. Once I am in a flare up it is near impossible to get it calm it just takes time. I had a horrible reumatologist apt yesteray which resulted in higher pain and no answers so this does not help. I am suppose to go to Cleveland Clinic on the 8th to talk to the doc about the scs though he said he would do it already since I was told at Ucla to have it done. I posted on the rsd forum to see more experiences and I am in contact with this young girl who had the surgery with my doctor but is having some issues with it. Thanks and I hope things are looking up for others.

Daniella,
I too have mixed feelings about the SCS. I've had three doctors suggest I have one. But I always back out at the last minute. My spine is so messed up now that I don't want anything else to mess with it. You might post on the Spinal Disorders Forum. There are also some posts there about them already.

Good luck with your decision.
Billye

Hi Daniella,

I have just had the SCS implanted on the 2nd of this month and so far so good. The only thing I am having issues with is the healing process. lol
When I did the trial, I did experience 30-35% relief and I have full body RSD, along with Fibromyalgia, Osteoporosis, and MS. They aren't sure if the SCS will have any effect on the Fibro or MS, but I will sure let them know how it does or doesn't effect it. hahahaha
The surgery itself went extremely well. It only took about an hour or so and I was able to walk upright 2 days afterwards to go to hit office to have him check everything, and have a weekly appointment with him for the next couple weeks. Personally I would recommend it to anyone to at least do the trial and see how it effects you. I will tell you the trial is a bit different than the implant because it is not firmly anchored down, but you will get a really good idea of how it will or will not help you out.

Hope that helps you out some in making your decision to do at least the trial on it.

You are in my prayers, both of you!!

In His Glory,
Marla

I sympathize with your doctor/dx frustrations. I spend so much time on researching and then getting doctor appointments that it has become akin to being my job now...

What I noticed in your post however was that you say you went to UCLA, and now you would be going to the Cleveland Clinic for the SCS. Why Cleveland? If you are in LA, there are doctors here who do the SCS. I see Dr. Josua Prager (who's office is actually at UCLA physically), who is well versed in SCS's. Though, alas, he doesn't take insurance per se. But he's really good.

With respect to an RSD dx, has anyone suggested Ketamine infusion treatments to you?

You know, the more I hear about Rheumatolgists, the more I wonder if most of them are even worth seeing. I was just having a discussion this evening with a friend in Dallas about the problems she has experienced with hers and the lack of help she has gotten for her pain.

I don't know anything about Ketamine infusions, but I would be inclined to try those before I resorted to the SCS, if an experienced pain management doctor would administer them.

Good luck,
Cathie

Thanks all. As usual you are all so helpful. A few notes. I am back in MI and so why I am going to Cleveland Clinic. The doctor I am seeing there does many of these a year and works a lot with rsd. I am not sure if my insurance will cover anywhere it is looking not.Marla thank you so much and I hope you continue to feel better. You are awake correct for the surgery? I know the trial is different but if you can get any relief I here the perm will work. A girl I know got the temp but then got one after for 6 months only. The healing process after the perm can you still walk or how long are you suppose to rest and is that the same for the trial?
Silverlady I will check out the spinal forum. I hope you feel better.
Cathie I have heard of those infusions. I have to research more. When I was in Fl there was a doc who did those.
Dshue thanks I was seeing Dr Carden and another doc at Ucla when I lived there but moved back to MI. Good luck to you
I will keep you updated. Each day I change my mind. Just wish this was not a choice I had to make.

What is it, your feet?? I USED to have that problem but not so much now. I did some things that really help.

Daniella,

Truly sorry you are in so much pain and suffer so. I am sorry not much has been helpful, to date, for you. I hope issues/concerns and more information becomes available to you...making it easier to gain some clarity on the best move for you to make at this time!

Please let us know how you are doing, if you feel led to do so?

Many blessings!

Thanks. My issue is inner ankle/foot/calf and now spread to the other leg. Also I am wondering if some of my eye issue is part of the rsd though they think seperate. I have an apt with the eye cornea/retina docs that Mrsd D recomended. Dejavue thanks I will keep everyone updated. My apt is in 3 weeks so will see.