Hi Ms CJM,

I'm also new to this site (takes me awhile to get around and find all the SCS posts or RSD - I'm trying to read everything to educate myself ). My response will be long, but please bear with me and really read what I am typing. Ask questions - send me a private message or email. Chest wall stimulation (even abdomen) is very serious, and I think the doctors and reps don't want to explain what is happening, and they might not fully understand how to correct it. It is also very scary to the patient what is happening, and what it could possibly mean.

My stim has been nothing but trouble. I've experienced the same symptoms you have described many times. When the stim was first implanted, I had to wait about 4 or 6 weeks before it was turned on. Coverage was a bit hard to obtain in the correct position, and the day after it was turned on, I was taken by ambulance to the hospital and admitted because they too thought I was having a heart attack. What it turned out to be was caused by the stim (I knew it, but the ER doctors or cardiologists didn't have much experience with the device), I did have to stay overnight, blood work was fine, heart seemed fine as long as the stim was off, and I passed my stress test with flying colors.

After this episode and I was released, I was re-programmed. I was re-programmed so many times, I even asked them to give my husband the "hand-held programmer" and to teach him how to do it so I didn't have to come in all the time. Finally, because my battery moved in a position where the controller or rep could no longer communicate with it, another surgery was scheduled and they decided and suggested to implant a paddle as opposed to the free-floating wires.

My original implant was performed on Sept 21, 2010 - my replacement was performed on Dec 2, 2010. During that time I could not use the stim, the pain was horrible, even worse then before because now I had additional pain and could feel the wires in my spine.

My paddle was implanted by an orthopedic surgeon. This time, the stim was going to be turned on immediately after surgery. Apparently, it was also turned on as the paddle was being placed and according to them I was awake. It's funny because I remember nothing. I remember the first one when the wires were being placed and talking with the doctor and the rep, but I can't remember the 2nd one. Any way, in the recovery room, the rep turned me on, and while laying completely still, I had good coverage. She then had me move, and I practically jumped off the bed. She turned it off, and we thought it was because I had some major swelling going on and everything was cross feeding. I was told that with the paddle, I would not experience the cross feeding, the chest wall stimulation, that it was a more stable, direct method.

At my 2 week check up with the orthopedic surgery, the P.A. was very concerned about my new symptoms (I had reported them to the pain management doctors prior) - it seemed the RSD was flaring and now in my back, shoulders, neck, arms and hands. She advised the pain management doctor on my case, he saw me and thought it was just because I had two pretty intense surgeries so close together and to give it some time.

We left the stim off for a few more weeks hoping the swelling would go away. The only thing that happened is my new symptoms became more intense. I am still having trouble with sensations in my heart, they are even worse with the stim on. When I turn the stim off, they seem to subside within about an hour or so. With the stim off, I even have the "sensations" in my leg for about the same time, and I asked two different reps, got two different answers. One rep said that is common, some people continue to feel it, others say it goes away as soon as the unit is turned off. The other rep told me that it is not normal for residual sensations for the length of time I am experiencing it.

At yesterday's appointment, the rep gave me a new program. One in which I can only increase or decrease the strength and not the pulse. He is trying to rule out whether or not there is something going on with the stim or my heart.

Well, last night I had to once again turn the stim off because of the funky feelings in my heart. It's hard to explain the sensations, but I will try to see if that is what you are feeling. I can feel my heart beating, it feels like it's racing, and beating hard. It also feels icy, kind of like an ice cream headache in your chest but it burns also. It's more intense with the stim on. I've turned my stim on as I am typing this so that I can describe everything to you, so that I can re-experience it as I am describing it and not miss a feeling. It also feels as though something is sitting on your chest. It also seems to cause horrible muscle craps in my bad foot, I am suffering one right now. I did turn my unit back off, it also messes with my head.

I don't know what is going on really, but I did some independent research last night. I know that when they implanted my paddle, my RSD spread/flared into the upper part of my body. I am concerned now after reading things that it's not just "chest wall stimulation", but has the RSD spread to outer membrane of my heart? I believe that is what the rep was trying to rule out, but was afraid to tell me directly. This is a scary thing, as so far the blocks I am receiving now aren't working and seem to be making things worse.

This is the website I found last night. I don't know how old or new, how long since it's been updated. I just read this stuff and freaked. I will post the link, so you can read it and ask your doctors about it.


http://www.rsdhope.org/ShowPage.asp?PAGE_ID=5

The site does make sense. I don't think enough studies have been done on RSD, it's a horrible disease. I don't think the doctors want to tell you the possibilities involved, the surgery for the implant might or might not make things worse.

I don't want to scare you (or anyone). I just want to help find the answers. To help myself, to help others. I'm scared. What is going to happen? Has it spread to my heart? I have two teenage kids at home that need me - I have a husband that needs me. I don't want to think the worst, but I have been far from the text book patient, am I too far advanced for help? Are the injections going to work or make things worse? If only they had told me that there was a possibility of this spreading - if only I had really educated myself as opposed to trusting the doctors 100%. Research! Ask questions! Get answers!! Give them this information - ask for the testing to see what is going on with your chest. Determine if it's the stim itself or if it has "flared".

I am hoping that I am just "overstimulated", I am going to give my body a rest. I will have no more pokes, no more surgeries. I am not going to use my stim until my upper body settles down (if it ever does).

Good luck to you, and please keep us updated!