[ams0310]

I finally had my scs put in 9/28 for RSD left lower leg with no major issues, everything has been pretty good. I am really sore, which seems to be normal for me. My pain hasn't gone away in my foot/leg. I didn't expect it to, it has gone from 8.5-9ish to about a 7ish, which is a start for me right now.

I have been doing everything by the book, no lifting, twisting, no major bending, etc. I have been dealing with the sensation of the scs "vibrations" in both legs, the rep assurded me that we would adjust this next week when I come in for my post op visit as things are going to be a learning process. I am trusting her on this, which is what I should do, right?

I woke up this morning and noticed that things just didn't feel "right". I hurt...all over. Not just my RSD leg, which is back up into an 8 again but my back & hip (post op) is killing me. I feel like I am being zapped all over, very uncomfortablly.

I have changed to the different settings. I have 6 in all, 3 are doing nothing, I notice nothing at all when I go to them. No vibrations (or whatever you want to call them) One of the others only works when I arch my back and the last only works when I turn it all of the way up. Then I am only feeling the sensations in my back & thighs, not in my lower leg & ankle like before.

I have called the clinic, the dr. was out, they will call back tomorrow and I also put a call in to the rep. No calls back today from her.

Does anyone have any experience with this or any suggestions, ideas? I am kinda worried & stressed. Of course I have been taking the percocet like crazy today, which is what I was trying to avoid, urgh!!!

Any ideas, suggestions, advice would be helpful.

Thanks so much.

[dealingwithtos]

Hello,

The first thing I thought of when I read your post is to try to STOP, take a deep breath and chill....being worried will make your pain that much worse. (I know that's easy for me to say)

The second thing I thought of is to give yourself a break here. It's only been less than 2 weeks. You just had major surgery.

Ok....

I had my SCS implanted a year ago August. It takes a long time for your body to adjust. Your nerves are screwed up right now. It took a good 9 months for my body to heal and feel better so that I could function as close to normal as I can. (I work FT)

So, when you say your back/hip is hurting - is that from the battery and the insert area of the leads? If that's the case, I'm not surprised. I couldn't lay on my back for 6 months after my surgery. It just needs time to heal.

As far as stimulation, they need to change the stimulation in your leg - it's a trial and error process. I have gone back about every 3-4 months to get reprogrammed just because I couldn't get the right coverage. It takes time. I would think I had the right coverage and then when I get home, I notice that it was better how they had me before I got reprogrammed... You just don't know until you live with it a few days. Especially now when things are so new.

The other thing I wanted to mention is that you don't have to feel the sensation for it to be working. Now, if it isn't taking care of the pain, that's one thing, but just because the sensation isn't there doesn't mean it isn't working. My leads are in the base of my skull because I have the RSD in my arms. I don't feel the sensations all the time. When I arch my back, bring my leg up, slouch, etc. I do. That doesn't mean it isn't working. Secondly, I don't know if this applies, but the stim doesn't take care of muscle issues. If you're spasming, feel like your legs weigh 1000 lbs, the stim won't take care of that. It's only specifically nerve pain.

I know your wondering - all of this above is wonderful, but what do I do now?

I would get snuggled in my chair (or on the couch) - take the percocet (don't feel bad) - and watch a movie or tv. Give yourself time and wait for that appt (hopefully not long) where you and the programmer can sit down and sort out why you're not getting the coverage you need. If that appt doesn't make things better, make another one. You might want to make an appt right away when you're with the person. Make it a month from now or so. Or 2 weeks... If you need to cancel - great...

With me, the more I worry, the more I hurt. There's nothing you can do until you have that appt. I've been there.

I'm sorry you're in so much pain right now. Please give us an update as to how you're doing.

[ams0310]

thank you, you are correct...worry = more pain. An appt. has been schld.

Your input makes a lot of advice. Something that bugs me is I also feel pretty lazy as well.

[edever34]

Hang in there on the SCS. I have had mine 1 year now.Everything you mentioned I went thru. Sounds like you do need a tweek on the programming though. My rep is WONDERFUL and I get re programmed also every 3-4 months. Pain patterns change even in general areas. My back still is uncomfortable after 1 year-I had SCS with laminectomy.I just learn to live with it because the SCS gave me back part of my life. RSD in right foot and leg-was barely able to walk or function before the SCS. I really hate to hear others on this forum bashing SCS-It has worked for me-hang in there!!!!

[ams0310]

you guys def. know what you are talking about! They had to readjust the settings.

Went in, my rep had my mind set at ease within minutes, what a guy. They sent a different person that who was in the OR, I wish I would have had him with me from the start, he was awesome!

He actually gave me a few more settings, even gave me a couple that he thought would be good for sleeping since I told him that I haven't been able to sleep with it on.

He took the time to listen, he acted like he cared and gave a crap. That meant a lot. That helps the stress level!

They also took the stitches out too, I look like frankenbutt!!!

Make that Bionic Frankenbutt!!!