My Trial SCS
 

Well, I got my Trial SCS on thursday. It was more painful than I thought. I feel like I had surgery instead of needles placing the leads. My back hurts very much. I haven't seen a big difference in my left leg/ankle (where my CRPS is). The buzzing kinda hurts actually. I have to have it so low I can barely feel it. I don't know if it will work out yet or not because I haven't been able to do much because of the pain in my back. They say to give it a few days before it will work though, so I will keep you posted. As of right now, I don't know what to think. I am just hurting. :(

:grouphug:

Hi Angelina. I really hope your back settles quickly and your pain lessens....hopefully your SCS will begin to have an effect on your pain and you can feel a bit more human :)

I'll have my fingers crossed for you, and send you a gentle hug in the meantime....hang on in there :hug:

Bram.

I'm so sorry - it's so hard to have to go through the pain of a surgical procedure in order to get pain relief. Know that people here understand and are rooting for you! I've heard of many people that get good pain relief from a SCS. Keep us updated! :grouphug:

I am just at a loss. I really don't think it is working. In fact the buzzing seems to hurt my leg still. They said to give it a couple days to get used to it, and I am, but it is not pleasant. My back still hurts. I was able to go to town today for a few minutes. It was nice to get out of the house and try out walking around a store with the SCS. It is just hard because I am by myself. I hate going through this alone. Everyone wants it to work so bad that I feel guilty saying that I don't think it is working. This has been the worst last couple days! I am trying to stay positive and thinking that maybe it will get better, but all I want is for it to come out! I don't think this was a good idea. :(

Oh Angelina I'm so sorry it's not doing as you hoped yet... Maybe things will settle down after the first few days and you will feel a little better.

I read around a bit about SCS, and it seems that the positioning is all important, and that quite often the position has to be tweaked to find the optimum place where it gives relief where it is needed. Hopefully when you return for your evaluation they can work out what is going on and improve things.

It must be terrifying dealing with this alone, I think you are incredibly brave. Don't give up hope, it is very early days and you may yet be lucky with it :).

Fingers still crossed here!

Bram. :grouphug:

Angelina, so sorry for your continued pain. I'm pulling for you. I would love to see this work for you. I too understand your concern that it may not be fitted just right. Know we are with you.

Angelina....have you tried messing with the frequency setting? Usually it is a setting that has to be "unlocked" by your rep so that you can try changing it yourself. All of my issues are in my left foot (forefoot specifically), and the frequency really made the difference for me with regards to what feels good and what does not for the foot. I did NOT like the sensation at all...until I canged the frequency :)

Well I can change between groups and how strong it is. The sensation just hurts, it doesn't matter how high it is. I have to have it to where I can barely feel it. And it seems to make my pain worse. Did your back hurt? I feel like my back pain is almost worst than my leg. It has been 4 days and it hurts so bad. How long did it take for you to get "used" to it? The sensation? To start seeing a difference?

And then I thought I had pulled the wires out, so I called my doctor and he was so rude! I get that it is Memorial Weekend and you are probably having fun, but I was hurting. I was getting a headache and weakness. He told me If you did pull them out there is nothing I can do. and I don't know why you called me. He didn't even give me any answers or help me in anyway. I know I didn't pull out the wires because I can still feel it in my leg, but the way he handled it was just *&$%^....lol

Not that I am recommending this, but when I had my trial leads pulled both times it was very easy. I'm so sorry this isn't working for you. :( I have back pain with some of my programs with my permanent. My rep said it was love it or hate it usually with rsd. anyway, hope you start feeling better. Having it not work over a holiday weekend must be terrible. Hope you have low pain. I did have to tinker with my settings a bit during both my trials. Anyway, I hope it looks up for you. Thoughts with you!

TK

:hug:

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
:hug:

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! :hug:

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...:confused: 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 :hug:

Bram.

Thank you very much! :) I am hoping he was just upset that I was disturbing his holiday weekend. And that he really will help me when I see him next and be more understanding.

Tkayewade
 

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.

It was removed
 

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?

Well, the rep talked to me then talked to the doctor. They took exrays to see if the leads had moved and then the doctor came in and said we are going to just take it out.

I'm so sorry it didn't work out for you....but your doc sounds like a bit of an *** all in all, and there has to be a chance that he has just given up on the idea... He certainly hasn't explained himself well or conducted himself professionally considering your situation.

I'd think seriously about finding another doc and getting another opinion on your situation. I think you deserve better than this guy has been giving you...just my opinion :rolleyes:

Oh dear. You've really gone through some tough times lately, and I'd hoped this would finally help a bit. Don't give up hope of something helping though :)

Bram :grouphug:

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!:hug:

Thank you! I will not give up hope! I truly believe everything happens for a reason and someday I will find out that reason. :)

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!!!!:hug:

Angelina,
 

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