Re: theresa

[Guest guest]

,

A stem is a neurostimulator that i had put on my spinal cord in the neck area. It is suppose to send electrical impulses to the body and stop the pain impulses from reaching the affected areas. They take two paddles attached to electrodes and place them on the spinal cord in the neck if it is your arms and middle of the back if it is your legs. Mine is both so they prositioned them so that if I turn it up then it affects my legs too but I can't move because the impulses prevent any impulses that goes from your brain to your muscles that are used to move with. The electrodes are then threaded down under the skin and fat in your back to the upper buttocks and a battery like a pace maker is put there to attach the electrodes to then I have this remote control that turns it on or off, up or down by placing it over the battery site. The first surgery left me paralyzed in the left shoulder/arm because the paddle fell between a spinal cord and the nerve,

this caused nerve damage so now my shoulder and arm hurts worst, then they fixed that (put the paddle back) then the electrode came out of the battery and was burning me internally so they had to fix that. It has helped with a little with the pain, but not as much as they promised. They promised I would be back to normal. But it has spread into my hips, legs and feet so I think it made it worst. Which according to some people i have talked to, it does, you should never do surgery on a RSD patient unless really necessary. Anyway, I can't find a doc that will continue my care. The pain clinic that did this stim is only procedural clinic, so I am not on any meds for the additional pain or the RSD pain. I don't know how much more I can take. I did go to an internealist and she has put me on neurontin, a muscle relaxer and lexapro for depression, and my pc put me on ultram, which is stupid. But neither believe in narcs or ops so I am

trying to find someone around here that knows about RSD and what to do.

Well thats my story.

Thanks,

TERESAfishthatsmiles@... wrote:

welcome to the group. what is a stem? my name is cathy and i have hadrsd for 11 years. please write when you can. hugs cathy

[Guest guest]

No, it is not too much to ask.

With the proper treatment, the right meds, etc. it is possible to do these things.

If you feel your Dr. isn't treating you properly, you should find a new one! One that has the same goals for you that you do.

Maybe we won't be pain free, but we'll be able to have bearable pain, pain that allows us to live life WITH it if we have to.

Jo

[Guest guest]

They told me that it would put me in remission and could stop the disease to the point that i would be able to turn it off and never have pain again. That was a load of crap. I have found out since then that really you shouldn't do surgery on an RSD patient because it alone can cause it to spread and make it worst. I don't know, I am so confused. And I don't have anyone yet to help me. My new doc called today and wants to see me tomorrow, she must have some results back from my blood work she did. I am going to take her some of the information that some of you have sent me so if you know where I can get more before tomorrow let me know and I'll take that to her too. We just joined the RSDA and they sent me some great information to give her. So I am trying to help too. I just want to finish my degree, get a job and retire. Is that too much to ask for?

Thanks,

BARBARA TORREY wrote:

- I've had difficulty with mine also. My first one was put in in November 5th. The incision fully ruptured (I'm not a "good healer.") on the night before Thanksgiving resulting in the need for emergency surgery. Fortunately, they were able to save the stimulator but I then developed an infection. My first stimulator was extremely positional. That is common with ones placed in the neck. They opted to remove the entire stimulator and the battery pack and replaced it with a new system in March. However, when they replaced it they used a more invasive surgical approach. It still cuts in and out with head movement (positional), but less so than the first one. I have to keep it pretty cranked up in order to avoid it cutting out on me. Not pleasant but it helps. It by no means relieves all of the pain but I understood that would be the case. My meds help some with the muscle

spasms and contractures. Good relief overall? No, but better than what I was dealing with before. Shoemaker wrote:

Have you had problems with yours? I have had to have two additional surgeries to fix it and I still have a lead that is broke they just don't want to go back in right now to fix that because that is in the neck. Sometimes my battery are hurts and burns, is that normal? It does mask some of the pain, but to really mask it I have to turn it up so much that it pretty much paralyzes me and I can't move or walk, but my leg and arm jerk. How does yours help you? Maybe I am doing it wrong.

Thanks,

TEresaBARBARA TORREY wrote:

- A bunch of us here have a spinal cord stimulator....Guess some of us were just not used to hearing it referred to as a "stem." I can understand why you're feeling so disillusioned. No one certainly ever told me that I would be "back to normal" (and I'm definitely not) after having the SCS implanted and I think it's a shame that it was misrepresented to you. Re the spread of RSD, while I've heard that there's some hope that an SCS might slow the progression, folks are pretty clear that there's no evidence yet to support this.....just a whisper and a prayer. Shoemaker wrote:

,

A stem is a neurostimulator that i had put on my spinal cord in the neck area. It is suppose to send electrical impulses to the body and stop the pain impulses from reaching the affected areas. They take two paddles attached to electrodes and place them on the spinal cord in the neck if it is your arms and middle of the back if it is your legs. Mine is both so they prositioned them so that if I turn it up then it affects my legs too but I can't move because the impulses prevent any impulses that goes from your brain to your muscles that are used to move with. The electrodes are then threaded down under the skin and fat in your back to the upper buttocks and a battery like a pace maker is put there to attach the electrodes to then I have this remote control that turns it on or off, up or down by placing it over the battery site. The first surgery left me paralyzed in the left shoulder/arm because the paddle fell between a spinal cord and the! nerve,

this caused nerve damage so now my shoulder and arm hurts worst, then they fixed that (put the paddle back) then the electrode came out of the battery and was burning me internally so they had to fix that. It has helped with a little with the pain, but not as much as they promised. They promised I would be back to normal. But it has spread into my hips, legs and feet so I think it made it worst. Which according to some people i have talked to, it does, you should never do surgery on a RSD patient unless really necessary. Anyway, I can't find a doc that will continue my care. The pain clinic that did this stim is only procedural clinic, so I am not on any meds for the additional pain or the RSD pain. I don't know how much more I can take. I did go to an internealist and she has put me on neurontin, a muscle relaxer and lexapro for depression, and my pc put me on ultram, which is stupid. But neither believe in narcs or ops! so I am

trying to find someone around here that knows about RSD and what to do.

Well thats my story.

Thanks,

TERESAfishthatsmiles@... wrote:

welcome to the group. what is a stem? my name is cathy and i have hadrsd for 11 years. please write when you can. hugs cathy

[Guest guest]

EXACTLY! I really really do have a high tolerance for pain. So if this is getting me down it has to be bad. I am not asking for 100% pain free, although that would be great, my expectations are not that high. I just want to be able to live and not just exist. When my husband says lets go to best buy I want to say ok, not well, I don't think I can handle the ride not alone the walk!

I am seeing this new doc again tomorrow like I said, I am going to take her some info and see how she responds, if she doesn't respond the way that i have learned from all of you, I'm moving on. I can't afford to wait much longer, not mentally or physically, my resolve is about gone.

jomal1@... wrote:

No, it is not too much to ask.

With the proper treatment, the right meds, etc. it is possible to do these things.

If you feel your Dr. isn't treating you properly, you should find a new one! One that has the same goals for you that you do.

Maybe we won't be pain free, but we'll be able to have bearable pain, pain that allows us to live life WITH it if we have to.

Jo