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!!

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

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

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.......

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

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........

kxlrogue-

yes - you are "way in" recovery mode.

This is my first reply to anything on any internet site-so am not certain about formatting, etiquette, etc. Been dealing with SCS for 5 years, and in addition to my strongest, strongest recommendation to have any scs implant done by a neurosurgeon who has this as the core or at least a focal part of his or her practice; I would suggest that you get acquainted with the manufacturer's rep, or whoever is the designated person from ANS, Medtronics, etc. who does programming of implants for users. For ANS, the person selling gear to the hospital/surgeon is that individual. My Rep is a young guy who has hung in with me thru a whole bunch of drama, and along with the surgeon who did the implant, is responsible for "giving me my life back, altho because of brain damage the seems to have come out of an initial implantation from a surgeon not meeting my 1st recommendation: so I should rephrase it "getting part of my life back". That however has nothing to do with the gear as far as I know.

My experience has been that as long as I feel stimulation and am getting any kind of relief, I am more than likely ok, and sometimes even when this is not the case.

1st, give your mind and body and spiritual person as much time and rest as possible. My son is a surgeon, not neuro, and he told me that healing at my age, circa 60, would take a year. After the initial healing period of 3 to 4 months, it took me a full year to catch on to just how to use the thing and to recognize when to ask Chad (the rep) for a tune-up. I've gone from a high of 175 mcg. fentanyl/48 hours and 24 mg of hydromorphone to 50 mcg. fentanyl and 20 mcg. of hydromorphone.

I have regained some thankfulness for life. I wince to write that, but for you folks who have lived with severe, intractable and crazy-making pain, I know you will understand.

I close with the above, and saying to all "may God's blessings, and the peace of Christ "which surpasses comprehension" be with you, upon you.

dougp

ps- I don't do any damn smilies!! Except low key cornbelt style :-)

Thank you Dougp for you input. Its good to hear someone who has the SCS for so long. Ive mine just 3 months now and like that I too have some relief. Your information is very good. I have a great Rep too who seems to 'get me' which is great. So plenty of tweaking sessions.

Its interesting that you should say to give yourself at least a year to heal. I suppose we wouldnt generally think that way. Especially if you get relief and feel you are getting 'back to yourself' within weeks or months.
Its a matter of taking it handy and slowly.

Jackie

I'm actually wondering .. my doctor said the stim would do nothing for my back pain only the leg pain? Yet some of you guys seems to be getting stimulation in the lower back too?

I have a program that does cover my lower back and legs.
However, even tho the electrodes can be programmed to cover the lower back area, doesn't necessarily mean it will alleviate the pain in lower back.
Depending on the source of the lower back pain (ie: disc degeneration vs. muscle pain)....
I find the stimulation to be quite soothing for muscle pain in that area, however, since I have degeneration issues going on in my lumbar spine, the stimulator doesn't really cover the type of pain that this generates since it is more of a 'bone pain' thing.
Sometimes the stimulation in the lower back actually irritates the pain.
It just kinda depends on what 'mood' my back is in on any given day