Reflex Sympathetic Dystrophy (RSD)

[chrisandrob4ever]

My new dr is wanting me to do the pain stimulator. I was wondering if anyone has had any good results from it. I have had many lumbar blocks epidurals and rhisotomy and nothing has worked. I am scared to go through with this if all my fellow sufferers have not had any good results.

[babbs]

most i have talked to have not had good results, i myself didnt do it cause of that reason

[Bussey]

Hello,

I would like to know if you have decided whether or not you are going to have the SCS implanted. Personally, I have not had that procedure done, but I have read about spinal cord stimulators, or, neurostimulators. Also, I have friends, who have had the procedure done, with varying outcomes.

Take care.

Bussey

[chrisandrob4ever]

Bussey,
I had the last of my epidurals on Monday and as of yet I am not a candidate for the stimulator. If I were I would try it because I am willing too try anything to get my life back and gain control of my leg again. I have only had this since between nov-jan but i am tired of not being me anymore. Bless the hearts of all of the people that have had this for years. This is the worst kind of pain I have ever experienced. MOstly I think because it can come on stronger at any second. I pray for everyone that has this everynight that we may someday be cured for good.

Thanks ,
Chris

[Bussey]

Hello,

If I may ask, why aren't you considered to be a candidate for the SCS, especially, since you are very interested in having it done? The one good thing about this procedure, at least, in my opinion, is that you are allowed to go through a trial implant first. Then, you will know if this is something that you will be able to live with, or not.

I know what you mean, about wanting to be you again! It was six years exactly, since the onset of my symptoms, on September 1, 2009. My RSD is considered to be idiopathic, because the cause of onset is unknown. I certainly do miss life as I knew it to be! I miss my career terribly!

In the meantime, I hope that your doctors are able to find a way to control your pain better, possibly, with other medications.

Take care.

Bussey

[chrisandrob4ever]

The reason I am not a candidate for the SCS now is because the epidural did not work. I was really hoping it would so I could have a bit of relief. Bless your heart for having this or 6 yrs. Not an anniversary you want to have.I have also contacted the tv show the doctors to see if they have any other ideas that my drs have not yet come up with besides using narcatics to make me loopy with pain.

Thank You for all of your questions and concerns,
Chris

[christine1003]

chris i have a neurostimulator it was implanted aug 13th and it did exactly what it was supposed to do it reduced my pain in my right arm dramatically however the problem with it is having any ind of surgery runs the risk of the rsd spreading which is what happened to me my arm is great my hand is wea but nothing like it was, the rsd in my bac is worse than my arm ever was not they are talking a breast reduction before they r done i may not be able to move, so i guess what i am saying is to weigh out your risks good luck

[April63]

Chris ~
I too had a stimulator put in a month before christine1003. I have RSD in my left leg below the knee. I have had good results and I'm glad I had it done. I still do however have back pain from the surgery but it's nothing that I can't handle. The swelling has gone down and flares up only when I'm on it too long. As far as the pain is concern, it's a good 40-50% better! And I'll take that over any drugs anytime! Still on a pretty high dose of neurontin, but I take the largest dose at night. I don't limp anymore or at least not as noticeably. I've been limping for almost 2years before the surgery. I still walk slow...BUT I WALK! So for me, yes it was the right decision. I know my doctor told me it does work best for limbs. It's hard for back pain and back injury patients. After I had my surgery, I was looking on the Boston Scientific website and they have a blog too. Raceagainstpain.com a lot of people on that site to have a stimulator of some sort. It might be another outlet for you to look at.

Stay strong,

April
(Hi Christine1003 : ) )

[christine1003]

hey April i am so happy for you, they now want to do some ind of blocks for my back even though i have 16 leads they cant seem to get it to cover my back, stay strong!!!

Christine

[April63]

Christine ~

Are you back at work yet? I'm not because I still can't stand for more then a couple of hours or lift the required 70lbs anymore. What are ind blocks? I do feel bad that it spread to your back I can't imagine if mine spread. It's hard sometimes to deal with what I've been dealt!! After my husband and I walked about a mile my leg was giving out and I joked that a cane would help...but I just don't want to go there yet. I know when I get older I will probably really need one! Take care,
April