[kzlrogue]

Hi all,

I was wondering if anyone has had problems with the SCS not covering where it is suppose to or not covering as much area as it's suppose to. I have had the implant now for about 9 weeks and am discovering that it is not covering my feet or the middle of my lower back. However, it is covering the front and back of my upper and lower legs as well as my rear end and hips, but I still have pain in my mid lower back and feet. I've also found that the stimulation seems to favor my left side. I was just at a 'tweeking' session yesterday and had the best coverage to date but when I woke up this morning and turned it on it was covering mostly my left side. I don't know if I'm still in 'recovery' mode or if this is how it's going to be. I'm also confused because I had the paddle implanted so the leads would stay in place so I could live a more active life. I guess I'm not sure if it's the leads that are not working correctly, if my body's not working correctly, if the leads were placed incorreclty, or if I just need to be patient and give my body more time to heal. I still have a lot of surgery pain but because I don't handle pain medication well am limited to what I can take. Although, my doc did up my baclofen so I'm hoping that will help with the muscle spasms.

I appreciate all your input. Thanks!!

[Mark56]

Hey KZL- I am praying and pulling for you that the pain control resolves! I am pretty close to my own Trial, I think, and I also want a more active life!

Here's hope,
Mark56

[Rrae]

Sort of........

Several of the things you've mentioned are similar to what I am facing.....
We had our implants in the same timeframe...... your surgery was wayyyyy more involved however, so no doubt you've got a way to go as far as the healing..........
But..... I'm trying to remember if you had the stimulation in the area at first and now it seems to be 'fading'...?
How many programs do you have?

I still have yet to get to my first tweek session (Apr 26), but several of the things you've brought up are similar.....such as the left side being favored....

What throws me for a loop tho, is that you just came home from a re-programming session and were happy with it, then wake up the next morning with the changes? That's strange.
Since our surgeries were so different, it's hard to compare.....

As of now, I am only using 1 out of the 3 programs I originally had. The other 2 programs create this very uncomfortable 'grabbing/pulling' sensation in my back near the incision where the leads are. I have found that this may be due to the fact that those 2 programs may be using shared electrodes, which is like setting up a program as a 2 in 1 sorta thing.
Some programs are set up to 'cross-talk' or they may be individually....
Also, I'm going to ask if my dual leads were 'staggered', because this, supposedly can cover more area.......
I'm basing this info from a friend via Email who is giving me input. Those stupid little 'handbooks' they give us do not say much more than what common sense would tell us, so at least this friend of mine is giving me input that will aid me in the questions I will be asking...

Also, as I was 'experimenting' around with my programmer, I realized that certain programs cover an area in a certain way, and then if I would lie down, the coverage would change dramatically.
I guess that's why they create the different programs for our different activities during the day/nite.
So, while you were at your programming session, did he have you lie down/stand up/sit down/ to program the leads according to your different positions? I'm hoping that's all it is in your case, that you woke up lying down with a program on that he set as you were in a standing position....

Good Gravy.....this sounds like a tossed salad with a micophone!
I hope I haven't caused you more confusion.

I'll check back soon and we can compare notes k!

Your Friend
Rae

[Rrae]

Also forgot to ask:

Did he say that 'scar tissue' could have anything to do with the changes in coverage? As the scar tissue grows and shapes, it may be possible to move the leads a bit? Maybe ?

Good Lord it's late........ nite nite.......

[edever34]

Hi all-Funny I was going to post about my re-programing today and here you all are!. Those who know me know I am going on 2 years with my SCS. Mine is also the lamenectomy type. I had not been doing too well the past 4-6 weeks and due for regular PM appt,the Medtronic Rep met me and OH BOY did I need 'Tweeking"
SO-always remember that pain patterns change and do not hesitate to ask for a reprograming!!! I feel tons better and will never go this long again. I do not even use the initial programs anymore and this is probably the 6-8th. time I have been reprogramed. So use that SCS to its fullest potential. Hope this helps-Fondly-Carol

[Rrae]

SOOO glad to 'see' you !!
WOW 2 years! I hadn't realized time has flown and you are at your 2 year mark.
You give PERFECT input ! Makes me realize how they say.....sometimes the obvious is right in front of us!
And in your case (I'll be exactly like this!) I bet it was just a very small amount of change going on over a period of time and we don't 'see' it happening.....?

Well, geee wiz, doesn't that sound logical.....

I'm glad the 'tweeking' did you good
Reading your post makes me realize all the more how important it is to be able to communicate well with our Reps. Communication is KEY. And that's why we need this forum so much! We 'remind' each other of the 'obvious' things.....

I'm in a flowery mood today....... not even sure why to be honest.

I just Luv you guys........

[edever34]

Hi Rrae-Good to talk to you again. I am going to try to use this SCS forum more often-seems like maybe I can help a bit here. I am pretty good today and wish you well-Fondly-Carol

[Rrae]

Originally Posted by edever34

Hi Rrae-Good to talk to you again. I am going to try to use this SCS forum more often-seems like maybe I can help a bit here. I am pretty good today and wish you well-Fondly-Carol

Of COURSE you'll be of much help here!!
Folks come here every day looking for input, experiences, advice........

Please stick around! Glad to know you are doing well !!

It's always inspiring! There are several here who are going thru some 'trying' times with their units...... Any input you can give would be much appreciated!

[abrown176]

I got my stim for my foot and if I don't turn up the intensity I do not feel it in my foot. When I turn it up real high I then get it in my foot. I do not get any sensation on my spine of my low back but do get both sides of my back. I have mine set to were I can turn the intensity of my back down and foot up if needed. I am suppose to meet again for another tweek session to try and get spinal coverage. I let you know if it helps. Maybe than can tweek yours and figure it out. Hope you can get the coverage you need.

[kzlrogue]

Well, I went back to see my doc on Thursday for another 'tweeking' session. We seemed to find even better coverage than Monday but when I woke up on Friday it seemed to favor my left side again. My doc and I looked at my x-ray that I had a few weeks ago, and it looked like everything is placed in the middle of my back so it's not like the paddle is "off center". My doc didn't really give me much of a reasoning as to why it favored the left side other than not everyone is symmetrical and that we are starting to touch the tip of the iceberg with finding the right program....that there are so many possiblities that we haven't even explored yet with the SCS. I guess I just need to be more patient. I think my doc does an excellent job in taking the time to find the right programs. Everytime I've needed to get a 'tweeking', she's spent at least an hour (if not longer) with me trying to find a program that has the best coverage. We've tried the programs while I'm sitting, standing, and laying down but it never seems to hold. I don't think she's worried about the scar tissue anymore (the paddle is secured quite tightly) because she gave me to go ahead to start golfing if I wanted. (I wish I was up to that but the surgery pain is still bothering me quite a bit.) It's just getting a little frustrating that I can't seem to find the right program yet. I've been adjusted 5 times and it hasn't even been 10 weeks since the implant. I'm also really disappointed that one of my meds was increased, too. Ugh! I just need to stop feeling sorry for myself!! I'm not going to settle until I have the coverage I need so I just need to keep my head up and move forward! I did not go through all this to quit now!

I also wanted to tell you all how much I really love this place! I always feel so much better after getting my feelings out and knowing that people have had similar experiences doesn't make me feel so alone. I love my family and friends to pieces and they do the best to relate and support me but until you walk in the shoes of someone else, it's not the same. All of you are so incredibly AWESOME!!! I so appreciate your thoughts, comments, and support!

Thank you!!!