Hello friends!

There are more and more people desperately seeking information regarding these Spinal Cord Stimulators (aka Dorsal Column Stimulator) because their Doctors are recommending them....

I thought, for the benefit of all the newcomers, I would just ask POINT BLANK if these units aggravated or caused RSD/CRPS to actually spread. If so, please make a post on this thread giving a quick over-view of your circumstances.

There is no way to possibly compare one person's experience to another's, but regarding RSD and SCS causing it to spread, it would sure be of help for someone to see one thread targeting this question, rather than having to weed thru all the stories.

There are many success stories with these units, especially for people who have peripheral neuropathy-type pain in their extremities.

It is extremely hard to find a doctor who will actually sit down with a patient and try to determine the difference in the two types of conditions......PN.....and .... RSD.
More times than not, they are made to be considered one in the same.....

So, if you've been officially diagnosed with RSD/CRPS and had an SCS implanted and suffered from the spread of your RSD, please let it be known!

There is a thread conducting a poll on the outcome of the SCS here on this forum.....this would further elaborate on the RSD spread issue...

Thank you

Since having my stim implanted, The doctors are questioning if mine has spread up my back into the surgical sights. I know how bad my back hurts and would hate to have thoght this would have happened. Well mine has gave me lots of trouble and multiple surgerys to fix. Never take getting one lightly. Allways really whey your options before the final decision is made.Good Luck in what you decide.

I have a SCS..RSD did spread following implantation..to whole body/internal..not to mention I can't use it..hurts my RSD while it is on AND limited movement, painfull back too..

Do your homework everyone..but keep smilin.., it is a must!!

Hugz, Kathy

Hi Everyone,

I was asked to tell my story with the stimulator that I had implanted a year and a half ago - Nov/08.

I got RSD from a rib resection surgery that damaged the nerves in my arm. Still today an area of my arm has very little feeling. In the last 6 months the RSD has gone to my other arm.

The trial for me was very short, 4 days, and somewhat limiting to how I felt. My husband noticed the difference more than I did. I was still just dealing with having the stimulator trial. I felt like somebody punched me in the back. After the trial my husband said "remember when you said you could wear a shirt on your arm without a pain patch?" I guess what I'm saying is that sometimes we don't notice the positive aspects to it because we're still dealing with it. Some people don't want to give it back, for me it was less clear. I went ahead specifically because of my husband's outside perception of the difference it made. He listened to me those four days. It's very hard when you're the one having the operations.

The stimulator implant isn't easy. It really takes a year or more to have the leads, battery to scar in. I was out of work for 2 weeks when I had the implant. I still itch around the battery site. Not all the time. The stimulator has taken all of the sensitivity away in my arm. But, let me say this. When I was programmed by Medtronic recently they described the programming as trying to find a single strand in a piece of celery - to find the right nerve that will help. He said there are millions of combinations for the programming and it just takes awhile to find the right combination. I made the joke that I probably have a better chance of winning the lottery in that case... I've been programmed about every 6 months to keep trying different options. You have to live with the change for awhile to know whether the change was good or bad. If it was a bad change, they can put the programming back to how it was. It's a trial and error.

The stimulator for me also helps to control my body temperature by stimulating the nerves. I have drastic hot and cold flashes that last for hours. The stimulator helps control the nerves and my body temperature. Drastic changes like when you have the flu. For me, it happens so often that I wouldn't know when I have the flu because I'm so drastically hot and cold at times. I first check the battery on my stimulator. More often than not, I've forgotten to charge. If not, it is what it is and I deal with it. In Minnesota the temperature can change by 30 degrees from one day to the next. My body reacts to those changes in a negative way.

No, my RSD has not spread throughout my body because of the stimulator. It takes a long time to heal, but no it hasn't spread. What I've found with this is that my foot can be on fire for a few days and then it goes away. Or, my back. But, it's not the same as my arms because eventually it goes away.

This disease is horrible. But, I hear of such horror stories about the stimulator. This has not been a mistake for me. I'm able to work FT and be as normal as possible. My husband does do a lot of the housework. It's a give and take. I helped my son with a project last Sunday. I went home early from work Monday crying in pain because I did too much. The stimulator isn't a cure-all. Let me make that clear. You don't get the stimulator implanted and think that you're going to be as good as new and things will be back to normal. Things will never be normal. But, it can assist with taking less narcotics and have a clearer mind with less pain.

RSD is more than pain. It's pressure, spasms, inflammation. The stimulator will mask the pain signals to the brain - when it has to do with nerve pain. I still have the horrible bone pressure and spasms. I chose to get the stimulator because I needed to work. I can't work when I'm taking narcotics 24 hours a day just to survive and sleeping through meetings. For me, the stimulator has kept me working and moving. I was told by my pain specialist that my job has been my savior because it's kept me moving and kept me using my arms - even when they hurt.

I still take 2700mg of Neurontin, 12 hour extended release Norflex, a anti-depressant and a multiple vitamin every day. I have oxycodone when I'm in horrible pain - which is about 1-2 times a month.