The rep. and I just can't seem to find a program that helps with my cervical/upper back pain so last night I decided to just turn the dang thing off and see what happens. So far the pain hasn't increased so I'm leaving it off.

Rather bummed that it's going this way, as the cervical trial helped a lot with the pain, but for some reason the permanent just isn't hitting the right spots and is more often than not, making the pain worse. Will see my pain dr. next week so hopefully he has some ideas.

At least I have relief from the lumbar implant, so I'm trying to focus on that so I don't get too bummed out here. Hopefully I won't end up with a useless, expensive implant in my butt

That your cervical stim is giving fits and not working as well as your trial. Gosh, that just isn't the way it is supposed to be. Maybe as you suggest, another review of it with your doc will provide some alternatives.

It is good to know your lumbar set is functioning well and helping, though!
Caring for you,
Mark56z

Sorry to hear that Fiona. It must be hard for you.

Can I ask you where in your shoulders do you have the pain and how does it affect you. Burning? Stabbing? Just wondering

I do hope you get some answers next week I really do.

Jackie

Hopefully we can get "the twins" up and running together.

I just took a nap and had to turn the cervical SCS back on as I was getting neck pain while laying on my side on my pillow, but then my arms gradually went to sleep, as has been happening. My arms going numb wakes me up and I have to switch sides through the night. I'm a side sleeper and just can't make myself sleep on my back, unfortunately. Then when I'm up and about, through the day, I seem to do better with it turned off.

My upper back/shoulder pain is across the top of my shoulders and down into my shoulder blades and goes into the upper parts of my sides, just below the armpits. Hopefully this isn't the "dead zone" that I was told about.

Thanks for your prayers!

Fiona I cant believe that you have all that pain in your lumbar area and then on top of that you have it in your neck and shouldershow unfortunate for you to have all this chronic pain.

I sleep on my back all the time. I can only sleep for a few minutes on my right side but not on my left at all. Not since my first operation 6 years ago. So I can only imagine what you are going through if you get numb arms. Im so sorry to hear that the SCS isnt as useful like it was in the beginning. Maybe when you meet with your Dr they might be able to come up with something better for you, a programme , to use.......

Jackie

Fiona, my stim has given me fits as well. I first had it implanted in Sept of 2010. My leads migrated and my battery moved to where it was unable to communicate and it was sticking out about 1/2" from my side. I even ended up in the hospital the day after it was turned on due to chest wall and abdomen stimulation.

In Dec of 2010, the doctors moved the battery to my upper buttock and surgically placed the leads and paddle to prevent migration and to be able to give better coverage. Immediately following this surgery, I was told the device would be on as opposed to waiting the 4 to 6 week "recovery period". Well, the rep tried the stim again in the recovery room and as long as I wasn't moving, the stim delivered proper coverage. Any movement set the stim resulted in migration and painful stimulation. They turned it off and thought it might have something to do with all the swelling and the sensitivity due to two surgeries in the same region so close together. '

I swear it seemed like I was in for re-programming every other day! As soon as I would have coverage in the office (even with moving, sitting, standing, etc), the ride home would have it back out of whack. One rep even started with baby steps and said until some of the swelling went down, that I would have to as we called it "tune in". This involved me having the stim on and moving, arching my back, etc. The following week, and a different rep, it was once again re-programmed because she felt I really shouldn't be moving like that and was afraid it was do more damage then good.

I finally have three programs that "work". It still doesn't provide the coverage I had one day in the trial, but I still have my stim on. Some days I don't bother, as it seems to hurt and make me more tired. I think it's because of the stimulation of other areas. I still have swelling and actually since the surgical implant, two doctors agree that the RSD has spread.

I have undergone two more epidural blocks (just finished the 2nd yesterday), and am waiting to see what the next step is. I too am thinking that I have such an expensive wasteful piece of equipment in my ***, but after talking with the doctor yesterday, removing it might make things even worse. We are taking it one day at a time.

Have you talked to your doctor about migration? Has he/she recommended trying a few more blocks? Changes in your medications? My doctor yesterday ordered a "special" ointment that contains neurotins (spelling?), pain reliever, muscle relaxants, etc all mixed together. Before they can once again concentrate on the stim and the "original region", he feels they have to get the new areas under control.

Good luck to you, and trust me - I know how you feel about the "wasted" device. I am just hoping that it is doing it's job, that I just have too much going on to notice.

It is just so hard to learn of your severe SEVERE difficulties with the stim. Of course, anyone can lean back on the "one size does not necessarily fit all" market mantra, but with trial and all, one would have thought they would have known of such issues before going full bore for the permanent.

Prayin you and Fiona get relief somehow someway!
Mark56