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!

What type of stimulator did you have implanted? I'm in the process of going to a pain mgmt. dr and was already told he would probably to the sympathetic nerve block in order to get insurance to pay for a St Jude's neurostimulator.

I have small fiber neuropathy with no possibility of nerve regeneration so....

I know you'll get a lot of responses here to help you out....good luck and I hope they get you to 100%.....that would be awesome right ?

Thanks

Debi

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!

Welcome to the Group!

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

Rae

Jen
What you are going thru is pretty text book, so you are just fine. It takes patience of course, but the final product is WELL worth all the tweaky's

I just gotta stress again to pleeeeeeeze follow the post op restrictions, even as you are feelin better.
Ask me 'why' I nag about this.......
Yep, I learned the hard way! Why on earth did I feel at liberty to throw bales of hay to my horses only 3 weeks out of surgery! Cuz I thought that those things only happen to 'other' people. Geeeeeeeze


TK - I am so sorry you are having such trouble with your thoracic stim and the spread to your back.
It just shouldn't be this way. My heart goes out to you and I always keep you in my prayers

Rae

just read thru all the responses....so you see you are "normal"...LOL...as normal as all of us!!

you so deserve this ...you have been so diligent with BLAST etc....and you have a responsive rep....good surgeon... foundation for success.

Isn't it great to have a place to take your panic and get answers.
lots of them

HB

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.

I am on my third unit and with each one several "tweaking" sessions are needed. Also if you have the pain move or spread then you need to "tweak" again. It is the nature of the beast. The only person I know that has not needed to "tweak" is Mark56, however his rep basically turned the programmer over to him and he did all the finessing he needed to then. If he has spread he may need to have some change made.
z

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