Endless programming
 

I have to share my frustration and see if anyone has had a similar experience or has any words of wisdom (I know there are many words of wisdom here!). The good news is that I had my 2-week checkup and got my staples out Monday, and the incisions look great. Also on Monday, I got my first re-programming, which was sorely needed because the initial programming was only covering about 25% of my pain area. The programming took about 20 min and was wonderful--I got about 90% coverage, and the rep told me that we should be able to get 100% coverage by the time I "scar in" and the lead stops wiggling. My grandma drove me home, and since I got the ok to drive, I got in my car and drove the 1 1/2 miles to work. I turned off the SCS while I drove. I didn't twist or anything since I have a backup camera (never used it before this!) and there are only 4 turns between home and work, so it was a really easy drive, and I didn't feel any different when I got out of the car than when I got in. I went in to my office, sat down, turned on the SCS, and...the coverage was completely different! I tried a bunch of different chairs, laying down, walking, standing, and nothing made a difference.

I called my rep, she had me make some adjustments to my programs (didn't help), then turn off completely for 3 hours (didn't help). Then she set me up with an appointment yesterday with her colleague (my rep was in with an implant surgery yesterday). Fill-in rep was great, spent 1 1/2 hours with me, trying somewhere around 50 different programs (including what she called "traveling up the lead" where she turned on each bit in turn to see what area they covered--VERY strange feeling!). After that 1 1/2 hours, she got me to 90% coverage again, with less bleed-over into non-painful areas. I was extremely happy with 90% (even if I don't get 100% when this is all over, 90% was incredible relief) but worried that I'd lose it as quickly as I did on Monday. With trepidation, I got back to work, sat down, and...80% coverage. I'm ok with that; my regular rep said she would meet with me again next Monday (and each Monday if needed) to make tweaks based on how I continue to heal/scar in.

My question is, has anyone else had this experience? Did it get better?

Thanks so much!

Hey Jen....question for you :)
 

Hi Jen
 

Yes I have had some changes just as you have even since I had my reprogramming last week. With me I have learned that the better posture I have the better my coverage is available. For instance when I'm sitting in my recliner I find myself letting my shoulders slump forward just a little bit and that effects how much stim I have going down both of my legs. As soon as I sit up like I should be sometimes I have to turn it down a little bit :)
It's a good thing you have a rep that is willing to work with you and trying to keep you covered as much as possible. My new rep told me to call her anytime I need gave me work and home number.

I have two SCS's (cervical & thoracic). I had to have many programming sessions on both at the beginning until it finally got to the best level of coverage. I think that is pretty normal at the beginning.

reprograming
 

Debi, I have a Medtronic RestoreSensor with AdaptiveStim. Thanks for the good wishes, and good luck to you too--hopefully you'll be able to get relief soon!

Thanks so much!
 

Thanks everyone, I feel a lot better just hearing that I'm still in the "normal" range! I've been so paranoid during the entire process, worried that I'll do something wrong and cause this blessed relief to be short term--although I'm careful to keep aware of how grateful I am for every day of relief I've had! I tend to be a worrier and it's a huge help to have all the experience and help from this forum--you all have really kept me from getting too down or doubting myself too much, and I'm really grateful for that.

The continuing good news is that both of the programs I got Tuesday are still working for me. Even sweeter, when I turned it off this morning for a few minutes, I had a tiny panic when (still sleepy) I thought, "why is my leg hurting again?!", and then a huge relief when I turned it back on and the pain went away!!

Thanks again!
Jen

Hi Jen
 

I am so glad your rep is responsive! That is the cat's meow!

Hopefully that programming will produce the complete relief you seek!

Actually, Pooh, I am one of two I know of in the world allowed to self program. The other is CoralToes. Neither she nor I have ever required any tweaking. Not once. The current pain issues I am suffering are related to continued degeneration of my spine at different levels apparently, so the SCS is not set to cover that.....and would never be able to reach from my lumbar to my cervical spine anyway....:)

Go for it Jen, reach the stars! :hug:

I have been programmed to death with my thoracic. I think a piece is loose because at least once a week I how to be reprogrammed, but I'm not having surgery. The wreck made it worse. My cervical one has not been programmed once since the day I got it. It's been charged three times. I have to constantly charged the thoracic. It has so many problems. If they weren't the exact same stimulator, I'd think they were different brands. I wonder if the thoracic is a dud. The thoracic also caused the Back spread. Soooooooo frustrating. Anyway, I hope you figure yours out soon!!! Good luck. I have one success story!!

Hi Debi!
 

Welcome to the Group! :hug:

It's great to have you! Do stick around so we can follow YOUR journey. Lots of great support here.

Rae