29-yr sufferer of chronic pain in left leg/foot. Had a Medtronic SCS w/paddle lead implanted 10/22/14. It was activated 1 wk post-op & worked great for the first week (80% reduction in pain). Since then I've had nothing but problems with it. The stimulation hasn't seemed to change much but no longer getting very much relief & now have some numbness & weakness in leg & foot. Had it reprogrammed 11/25/14 but no success. Also, my pain is amplified whenever I turn SCS off - worse than before SCS. Had to increase meds & now walk w/a cane just to exist. Having it reprogrammed again on 12/18/14. Does this sound familiar to anyone here and does anyone have any suggestions? Thanks in advance.

I'm glad you have found our group, but I'm very sorry to hear that you are having problems with your SCS.

I have a Medtronics unit, and I had my first surgery on December 24 of last year, but it was with percutaneous leads. Unfortunately, the leads migrated, and in June of this year I had revision surgery to have the thoracic laminectomy and paddle leads.

The first thing I noticed in your post is that you just had the surgery at the end of October. Having had two SCS surgeries now, I can definitely tell you that your body is still healing - and the bruising, swelling, etc. from surgery will have an impact on the stimulation that you feel - it will be changing for a while, and you will need reprogramming as the swelling goes down and your body heals. It might take three or four months (maybe more) before your body is healed enough to find a program that can hopefully work long-term, so don't be discouraged with the reprogramming - it is just part of the process. I have found, too, that one thing that is KEY is having a rep who is experienced and willing to work with you to get the coverage you need. A knowledgable and skilled rep is worth their weight in gold.

As for the pain being worse when you turn the stim off - I guess I am wondering why you turn it off. Has your doctor instructed you to only use it sporadically in these first few months after your surgery? I leave my stim on pretty much 24/7. Of course that means I'm charging every other day, but I always recharge when I drop to a 75% charge, since it tends to takes so long.

I don't know if your rep has done this, but I have four different programs that I can choose from or combine differently to hit my pain no matter how it might change throughout the day. If my lower back is worse, I tend to combine my programs 1 and 2. If my legs are really bad, I use my programs 3 and 4. Make sure your rep has you set up to where you have options.

Hoping the best for you as you continue your journey. Please feel free to share, ask questions, or just vent if your need to. This is an amazing group of people who have incredible strength, knowledge, and experience!

=Becky

Thank you for the response! I had to go out of town (7 hrs away) for the work-up, trial, surgery & programming. I worked with 3 different tech/reps in Las Vegas where I had the surgery. They seemed to know what they were doing but, just as it was with the trial (per-cutaneous leads), they are unable to hit the parts of my left leg that need it without having some type of nuisance stimulation in other parts of my body (abdomen, buttocks, SCS battery location in top of left hip, my other leg - especially my knee). My pain is worse in my lower leg & top of foot (left side only) but also hurts in my left thigh & groin. Any adequate stimulation in my lower leg/foot comes with over stimulation to my thigh & other knee. The thigh gets so much that if becomes uncomfortable.

I recently switched to a tech/rep in Reno (4hrs away) who was excellent! He has been able to come close to getting it right. Medtronic does have a tech/rep that comes to my doctor's office here locally once every 6-8 wks so hopefully I won't have to travel just to get it reprogrammed. I normally leave it on 24/7. I was charging it once/wk but since the last reprogramming (he turned everything up), I have to recharge every 3 days. As for shutting it off, as long as I have my pain meds & muscle relaxant (which really helps with left thigh spams caused by stim), then I'm fine & don't mind the increase in pain when it's off because I can keep it on 24/7. My biggest issue is getting the proper dose & type of meds. My pain specialist doesn't want me on muscle relaxants long-term and only allows three/day. If I was able to take both pain med & muscle relaxant every 4 hrs as needed (and not fear running out before the end of the month), I would be in great shape & with time, hopefully I can reduce or rid myself of the pain meds/muscle relaxants once all the healing has occurred and the stim is working properly. I have a friend who had a SCS implanted last May & she also said it took several months to settle & work properly. I guess I have no choice but to wait this out & hope for the best! Meanwhile, I have appt w/pain specialist on Monday & maybe I can get the med situation corrected. That in itself would be a blessing & great way to begin the new year! Thanks again for the reply!
...Todd

that would be awesome

Just wondering how you are doing with your unit. I'm glad that you have a rep who regularly visits the clinic.
It can take several tweek sessions as you know. Hopefully things will fall into place and settle down to where you'll be able to know what meds you might need to fall back on (break thru pain, etc). I get 70% pain relief from my unit in both legs. I still have to use pain meds and, like you, I battle muscle spasms (in my back), but all in all, I am happy to be able to be more in control of my pain. Otherwise I woulda lost my mind years ago.

Please keep us posted!

Caring,
Rae

That Rae lady is a true "go to person" on Medtronics. I am so happy she weighed in here.

May all be well,
M56