Hi I am looking for anyone that has a SCS implant. I went through the surgery 19 days ago and would like to talk to someone who has been through it too.

I have been thru 2 of them,so if I can be of any help let me know. You MUST be careful until everything scars in. Follow your drs. instructions.

Mary

Hello,

Welcome, to neuro talk. What part of the body is it trying to stimulate. I had one put in 3 years ago. It was stimulating both arms and legs and low back. I had it removed last November. I got good at working with the programers and using the remote mine was a Bostin Scientifc. If I can't answer your questions I'm sure someone on here can. There are a lot of helpful caring people on here.
Take care,
Sherrie

i also had BS, i mean boston scientific..i had a scs put in for my legs and a second scs was suppose to be put in for my arms but since thefirstone did not work i did not get the second scs.

i want to get mine out but i worry about flare ups. when you got yours out was it a bigger surgery than putting it in? bigger incisions? they screwed up the first time putting mine in. they were suppose to put the lamenecomy at T8 and the lead is suppose to face the spinal cord of course. they put the hole and lead on T7 and faced the lead toward my skin rather than the spinal cord so they went in to do a revision(3 months later). they put a new lead at T8 but did not make room for it so now i have constant pain from this lead just being there even with the scs off. and when they put the new lead in the Dr cut thewires so he had to put anew battery pack in also. the battery pack was not put in deep enough the second time so i cant lay on it or barely sit because of the pain from the battery unit.

so long recovery time did it take after getting the scs out?

mike

em68, good luck to you. i can answer any ?'s you have by phone or pm if youlike...

Hi Alaska Mike,
This sounds like a nightmare. Not good. I guess this is why I would neve consider one, accounts like this. I know there are some people helped, but the Dr. is a big part of success. Hope you get some answers. Lots of good people here. loretta

I had a Medtronics spinal cord stimulator implant put in over 3 years ago now because of RSD in both my arms. The surgery was a success with regards to the RSD, I had great luck with the Medtronics people, but the wires themselves caused me great pain in my back (it felt like a stake had been put in my back) and caused me horrible nausea and vomitting. After about 9 months and twice going in and attempting to reposition the wires (the idea was that perhaps it was sitting on a nerve root that was causing this nausea/pain), we finally had to take it out for my safety. Upon removing the wires, the pain eventually went away in my back, but the nausea has remained ever since 24 hours/7 days. They have tried every family of nausea medicine. I have been checked out by GI specialists as well because there are also some gastrointestinal symptoms that have started at the same time and have never left. The type of nausea it is is motion sickness type of nausea. And the best they can figure my spinal cord has just been "irritated" for some reason... and they don't see it ever going away. They just keep trying new medicines. But I would be anxious to hear from anyone who had or has this problem as a result of a spinal stimulator implant. I have found one study describing my results exactly, but it does not have any good information on what to do about it at this point for my case... it just advises to take it out in these cases... which we have done.

Currently my RSD has come back as well. Luckily, the time I did have the stimulator turned on did help seem to "reset" it, and when it came back it so far has not come back with the fierceness it had the first time so I have been maintainable on medicine.

So I would love to hear from anyone with any similar post-surgical symptoms.

Thanks so much. And I am amazed to see so many RSD people posting online. I think that is the problem with this illness. It is so easy to just go into yourself and let time pass without any socializing at all.

Hi have had 2 units implanted. they were by St Jude, ANS. The first one, the battery pack started moving and then the leads came out of my back. the 2nd one I only had in for abt 3 wks before I developed a MRSA infection and I had to have emergency surgery to get it out. It was not good. I'm looking at a pain pump now.

Hugs
Mary

since you have seen gi docs, i dont know if this will help but here is what happened to me when the stomach pain and nausea got out of hand for me.



when the stomach pain became unbareable, i finally goto emergency room. they find nothing of course. so i see a gastro dr. and they find out i have 2 dozen ulcers(6 are bleeding), hiata hernia, gurd, and ulcertive colitis or crohns. later they said it was crohns. a week passes and im still in pain so i go back for more tests and they find gallstones so they take out the gallbladder. a couple weeks later the doc says i have gout and a staph infection. all this happened in a 2 month period and it took place 4 months after the scs was put in. i dont know if it is coincidence or not. with the gallbladder gone, i havehalf the nasua and stomach pain now.. i was told to watch the greasy food and spicy food for the gallbladder and chrones. i was told to watch how much protein i eat for the gout. i have basically eliminated meat and the stomach pain and naseau have been controlled for the most part.

sometimes i use phenergan 25mg at home or when i have to get into the car(passenger)(never had car sickness before). phenergan makes me drowsy though, so sometimes i use belladonna or pepto.

good luck

mike

em68,

i just reread that last sentence and i couldnt understand it, so here is what i meant to say...

em68, good luck to you. if you want to, you can pm me on any questions....

mike

I just had the surgery at John Hopkins on August 8th. The scs has helped me get off all of my pain meds even my gabapentin. I only take Advil now. I do have a pain in my back which is where my device is implanted. I feel like everyday is getting easier pain wise. I can start physical therapy in two weeks. I can't wait to be able to lift things and stretch. I just need to work really hard to get my life back on track. I do feel like I need therapy to help cope with my fears of re lapsing or getting hurt again. I feel pretty traumatized and I'm embarrassed to admit that to my loved ones.