checking back in

[yellow]

TK, don't worry, you're not bugging me at all! I'm happy to help with whatever I can. I'm not sure of the exact nerve location of my leads, because my doctor never told me, but they're somewhere up in my neck. And my battery pack is above my right hip- opposite my other battery. Thankfully all my incisions are nice and symmetrical The incision for the cervical is at the lower half of my shoulder blades. That incision hurt me a lot during the recovery for awhile, and I think it's because it's a lot easier to not move your lower back than it is for your upper back, since you can't really avoid using your arms. For the first few days I was walking around with my shoulders raised because it hurt too much to put them down. But I'm so happy with the coverage and relief I'm getting from it!

[Mark56]

And we are thrilled for you Yellow, having the coverage and relief from pain which brings you peace! The optimal endgame!
Prayers found with answers which helped over all!
Mark56

[Hannabananna]

Originally Posted by yellow

TK, don't worry, you're not bugging me at all! I'm happy to help with whatever I can. I'm not sure of the exact nerve location of my leads, because my doctor never told me, but they're somewhere up in my neck. And my battery pack is above my right hip- opposite my other battery. Thankfully all my incisions are nice and symmetrical The incision for the cervical is at the lower half of my shoulder blades. That incision hurt me a lot during the recovery for awhile, and I think it's because it's a lot easier to not move your lower back than it is for your upper back, since you can't really avoid using your arms. For the first few days I was walking around with my shoulders raised because it hurt too much to put them down. But I'm so happy with the coverage and relief I'm getting from it!

Oh I remember that part of the pain...for months it just hurt to have arms...if I used them it was worse. I just had to stop life and allow myself to heal. Finally I am getting stonger!!
Johanna*

[yellow]

Well the programs from 2 weeks ago started causing the pain in my back too. I met with the 3rd of 3 reps that I work with today to try yet again to reprogram. Since the x-rays are ok, my doctor thinks it's a programming issue, but I'm just not so sure. All 3 reps have tried everything they could think of, and nothing is working. Today we were able to get a few programs that the back pain is at least not as bad for. But I left the other times feeling ok with my programs and then started getting pain in my back around the next day, so we'll see.

Everyone is dumbfounded as to why this is happening. It just started all of a sudden after the reprogramming from the stim cutting in and out right before Christmas. I only get the pain in my back when the SCS is on, and it goes away a couple minutes after having it off. My rep thinks it could be an issue with a muscle that might be having spasms, which I think you suggested Rae? So I think I will ask more about that at my next visit in 2 weeks. I still think scar tissue that's getting irritated could be the culprit too, since it's right at the incision that was reopened.

I just wish I had an answer, but as I was saying to the rep, all of this is feeling very much like deja vu from the time that I ended up having the revision. The same thing happened with the x-rays looking fine, multiple attempts at reprogramming which seemed to bring on pain in my midsection sooner and sooner after the appointments, and no one knowing what was causing the discomfort. She said she's never seen this happen before, or what happened the last time, but sometimes people's bodies do do weird things. So the ugly word of surgery was brought up if just reprogramming continues not to be enough.

It's crazy how things can change in an instant. It was working great for me for so many months until all of a sudden it wasn't anymore.

[Nanc]

Originally Posted by yellow

Well the programs from 2 weeks ago started causing the pain in my back too. I met with the 3rd of 3 reps that I work with today to try yet again to reprogram. Since the x-rays are ok, my doctor thinks it's a programming issue, but I'm just not so sure. All 3 reps have tried everything they could think of, and nothing is working. Today we were able to get a few programs that the back pain is at least not as bad for. But I left the other times feeling ok with my programs and then started getting pain in my back around the next day, so we'll see.

Everyone is dumbfounded as to why this is happening. It just started all of a sudden after the reprogramming from the stim cutting in and out right before Christmas. I only get the pain in my back when the SCS is on, and it goes away a couple minutes after having it off. My rep thinks it could be an issue with a muscle that might be having spasms, which I think you suggested Rae? So I think I will ask more about that at my next visit in 2 weeks. I still think scar tissue that's getting irritated could be the culprit too, since it's right at the incision that was reopened.

I just wish I had an answer, but as I was saying to the rep, all of this is feeling very much like deja vu from the time that I ended up having the revision. The same thing happened with the x-rays looking fine, multiple attempts at reprogramming which seemed to bring on pain in my midsection sooner and sooner after the appointments, and no one knowing what was causing the discomfort. She said she's never seen this happen before, or what happened the last time, but sometimes people's bodies do do weird things. So the ugly word of surgery was brought up if just reprogramming continues not to be enough.

It's crazy how things can change in an instant. It was working great for me for so many months until all of a sudden it wasn't anymore.

Sorry to hear about your back pain yellow! It sounds so familiar to me. They thought my back pain was coming from the thoracic leads that had migrated, which is why they went in and switched them out for paddle leads. It did help a little bit, but I still get that pain and pressure with either one of the SCS's on. I can't turn them up much because it will aggravate my back more. Which is so bizarre because the pain is not where leads or batteries are located. Dr was going to do a RFA, but then decided not to because he was afraid of causing RSD in my back.

One of the reps did some programs on a lower frequency, which helped.

Praying that you find an answer.
Nanc

[yellow]

Nanc, it does sound similar. Mine also isn't where the leads or the battery are. It's over the incision, and also a little to the left of it (which is the direction of the battery). Thankfully my cervical stim doesn't cause pain too, though. It's all the lower back where something's going on.

Out of the 3 programs I got yesterday with some but less pain, 2 of the 3 have gotten worse. The other one still causes some pain, but it hasn't gotten worse since yesterday, so I'm hoping it stays that way. There was also one program she gave me yesterday too that was only in the left leg but caused no pain. But strangely, that one is now causing severe pain as of a couple hours after the appointment.

My next appointment is in two weeks. When I talked to my rep today on the phone, she said I could come sooner for more reprogramming, but since it's a far drive, I'm going to try to wait with the program I have that's not as bad. But if this one gets worse too, she said to call right away. I'm very lucky and blessed to have reps who are very available and truly care about me feeling better.

I want to try to avoid a revision in any way possible, but if I do have to have one, I don't want it to drag out before it happens. I'm starting an internship this summer and I can't be recovering from surgery during it. But I'd also really want to make sure there was a good shot at it helping. I feel so bad that yours only helped a little, Nanc.

[Rrae]

Yellow and Nanc, I'm so sorry about this pain you are having.

Yellow, does your pain set in like a bad spasm? Just wondering.
You just gave me the idea to see if my spasms will simmer down if I turn my unit off.
I just now turned it off........em............ok, here comes the burn.....
I'll wait a few minutes to see if the spasm lets loose.
.....why haven't I tried this before now, you ask? I do not know.
I think I did try it before, but the original pain comes back so I aborted the mission. Like Mark says, he never turns his unit off, for fear it won't come back ON! That goes to show how bad the pain really is!

SPASMS, BE GONE !!

[Rrae]

wow, man......
well, the spasms certainly have settled down from a pain scale of 8 down to a 3ish. The original burning neuropathy pain is hovering around a '5' at the moment. I'm at work right now and that's when the spasms usually are the worse. I'll continue this little experiment thru-out the weekend and see how it fares.

I guess I could live with the burning pain for awhile if it means getting relief from the spasms.....
Times like this make it crystal clear that the SCS is a Godsend. I have absolutely NO burning pain when it's on!

Rae

[yellow]

Wow, Rae, that's really interesting that your spasms have settled down so much. Maybe there is a lot of truth to the SCS bringing them on. How does a spasm set in? Mine comes on suddenly usually right about the point where I can start feeling the stim. But it stays constant the whole time I have it on, and gets better a little after I turn it off. I wonder if that could be what is going on or not?

But now with the relief you're getting from the spasms your facing the same problem- trading off one pain for another It's difficult to choose.

I still don't know how Mark keeps his on all the time and charges as little as he does. If I had mine on all the time, I would be charging every day!

But the SCS does provide such sweet relief from the burning. I still get burning when I have mine on, but it'll only last for a couple seconds in each location and then go away, which is a huge improvement

The one "better" program does seem to be getting worse, unfortunately. It's at least not severe pain, though.

[Nanc]

My back spasms/pain pretty much go away when the SCS's are both turned off. I usually do not sleep with them on because I have to shift around so much...if they are on and I flip over...ZAP