Hi Angelina, so sorry you are not feeling any relief and are having troubles with your trial. I currently have two SCS's implanted. I have RSD almost everywhere and because of that they could not do the trial in all areas. They did the trial on my left side, which ended up being a blessing because I could compare one side to the other. Anyway, on the second day of my trial, one of the stims stopped working properly. I called the rep, thankfully my reps are great, and he walked me thru a fix until I we could get into the dr's office for him to work on it...then all was good.

At first I hated the stimulation and then came to love it. There are certain stimulations and frequencies that bothered me. After the permanent implant, I developed pain in my lower back and the stimulation was torture. Turns out that the leads migrated and were stimulating the muscle and other things it shouldn't have and it was still stimulating where it was supposed to. The rep put it on a low frequency and it helped until they changed the leads out to paddle leads.

Your leads could've moved and you would still feel it in your legs. The trial leads are very easy to move because they are only taped down on the outside and not secured on the inside, so they can remove them easily at the end of the trial.

Sorry your dr is being such a jerk! I think you should contact your rep and have them adjust the settings/frequency to see if it would help your pain. If they can adjust it to help you, it would help you with your decision for getting, or not getting, the permanent. The good thing here is that you are getting to test this out first.

I hope you get some relief soon and am sorry that you are having to deal with this alone.

All the best,
Nanc

I don't know much about SCS. Just what I've learned on this forum.

I'm sorry you are having the additional pain and that your Doctor is being a jerk! Even if he couldn't do anything there is no reason to be a rude jerk!

Thank you so much for this info. I just don't know what to do, I want it to work so bad but I am just in so much pain.

I haven't had an SCS so I have no idea what you're going through... just wanted to say that I'm thinking of you, and I really hope something changes very soon. Your doctor doesn't sound like the most human type, which really makes me so mad, you shouldn't have to deal with that kind of psychological crap on top of the pain and distress.

Keep going, keep fighting. We're right behind you hoping

Bram.

When you say pulled, do you mean taken out or repositioned? I am not sure if I want them to try to tweak them to see if it will work or if I just want them to take them out and be done with it. What is it like when they take them out? What happens? I am scared that it is going to hurt too. I have been in so much pain the last few days, I don't want to go through anymore pain. I am sure you know the feeling.... I am just tired.

Well, they took it out. I am relieved and mostly dissapointed. I feel like this was my only chance and since it was taken out early, I feel like I didn't get to test it as long as I should have. I went in because they were suppose to tweak it not take it out. But the doctor decided to take it out. I know that it hurt, but after talking to my rep on the phone he said that they could reprogram it to maybe make it better. and it gave me hope. And that they could lower the fact that it pulsed. It just sucks hearing ANOTHER doctor tell you there is nothing I can do for you. And pretty much don't come back.

Oh no!

I'm sorry! Did you tell your doctor what the rep had said?

So sorry you are going through this ordeal! Then, for your Dr. to be so rude is just so mean. It takes a lot of courage to even undergo the trial.
I'm supposed to get the trial in a few weeks so it is important for me to know of your experience.
At least there's lots of support here and everyone can empathize with each other!

I would just make sure to ask lots of questions and be very honest with them and yourself. And have them really explain things to you. I should have made the doctor explain his decisions more to me. Like why he took them out! Write things down! It is easy to forget. Write down how you are feeling a couple days before your trial..where your pain is, how intense, what makes it worse or better, what is hard for you to do, etc.. I wish I would have done that so I would have been able to compare while I was on the trial. I had such a hard time with pain in my back that it was hard to tell how my leg was doing. But I guess not everyone has that much pain in their back. Others could see a difference but at first I couldn't. Be VERY careful! Take lots of rest the first couple days to give the leads some time to heal. Then test it out. Go on light walks or whatever so you can tell if it works or not. I never had the chance to do this. I did get to walk a couple blocks (which I haven't been able to do in almost a year!) and it was awesome! Anyway, that is some advice that I can give you based on my experience. If you have any questions or what to know anything else just let me know. I would love to tell you. I wish you the best of luck!!!!

I had similiar experience as you did. I agree, the procedure was very uncomfortable. I was hurting laying on the operating table while rep and doctor were doing their thing.

I have spine issues; but this was suppose to help the PN in my legs and feet. The sensation/buzzing was in my groin area and the top of my legs. That's as low as it went. This was very uncomfortable. Called the rep. He met me, after the weekend, at the doctors office. He tried reprogramming. No success. He left the room and the doctor came in and said they were removing everything. That was the end of my trial. Although the doctor wanted to do another trial a few months later. I declined.

Like you said....things happen for a reason. This made me realize, I do not want to go thru the permanent SCS. Just too many issues. The battery pocket; usually in the butt seems to cause others so much pain, as well as leads migrating, etc.

Wish you well,

Gerry