Hi All -

I was wondering if anyone has experienced the spread of RSD after having SCS impants? I had two implanted at the end of June (cervical & thoracic) and then had the leads replaced to paddle leads in the thoracic one a month ago. Now, I started having so much pain in my lower back/hip area and down my leg.

I already have RSD in the right side of my face, both hands, left arm, left leg and spreading to right leg.

Thanks!
Nanc

So sorry you are experiencing this.
Is this new pain similar to the RSD you have? And is this pain felt only when your unit is on? I know that RSD spreading has been an issue for several folks. Hopefully they will see this and respond.

I sure hope this isn't the case for you. When is your next Dr visit?

Hoping for the best,

Rae

Nanc
That was fast to already be having problems (I would think ) with your scs.

I developed pain in the lower left side of my back, when the stim is on, after they replaced the thoracic leads a month ago. I woke up yesterday morning with this pain in my right leg that went from my knee up above my hip (all in the back side) and the stim was off. It's a deep, achy, burning pain. I could hardly walk all day yesterday.

I have RSD in the right side of my face, both hands, left arm and left leg. This new pain does feel very similar to how my left leg feels

I am scheduled to see my doc and St Jude rep on Dec 16.

Thanks -
Nanc

Well, I sure hope the Dr & Rep hear what you are saying!
They better not sweep it under the carpet
I hope you have good meds to get you by until your Dec 16th appt.
Please keep us posted!

I'm so sorry you are dealing with this.

Rae

I am so sorry that you are going through this.

Just my opinion...but I think ANYTHING that causes any sort of trauma can cause the RSD to spread. Mine spread after a block that was meant to help...and ironically it did give me some small relief in my left ankle where the RSD started but now I have it in my entire upper body too. I have no experience with SCS and at this point I would be too scared to try one after having spread after a block which is a far less invasive thing.

I pray that you are able to get some relief for this new pain. Please keep us posted on how things go...I hate to hear of anyone suffering with this monster. I also hope that they really listen to your complaints and work with you to resolve the problem. What made me most frustrated with my situation was that once the pain began to spread the doctor just shuffled me off to someone else and I got bounced around from one doctor to the next...all afraid to even admit the possibility of spread caused by the block. I knew that there were risks with getting the block...I signed all the paperwork...and it really just made me angry that the doc who performed the block was more concerned with covering his own butt than actually helping his patient. I certainly hope you doctors have more concern for your well being and can take steps to help you.

Good luck!

So sorry to hear what you have gone through! It is hard to believe that a block could make RSD spread, but if a needle stick can then why not right?? It really is sad how doctors respond to their patients when they do not respond the way they want them to! I can't tell you how many doctors I went to before I ended up with the one I am with now. I really like him, but I am not sure how much more he can help me. He does really seem concerned, but I am so complicated Nothing about me is "textbook". I really puzzled him and the St Jude rep with the added pain and pressure in my lower back after this second SCS surgery. This past weekend I had all this additional pain in my right side lower back/hip and down that leg. I could hardly walk. Spreading is the only thing I can think of by the way it feels.

I have had many blocks, they were successful in the past, but not this go around which is why I ended up with both SCS implanted.

Thanks and I wish you luck as well!
Nanc

nanc
When do you go back to the dr.? Please keep us updated on your status. what kind of scs was it? They are planning another trial with me I believe this winter

I think the only thing "textbook" about any RSD case is that they are all different. Many similarities...but never exactly the same in any two people. At least when I talk to people on here there is usually SOMEONE who has experienced a particular symptoms or something so that at least I know I am not imagining things (as some doctors and insurance companies would seem to like me to believe).

I go back to the dr next Friday, Dec 16, the St Jude rep will be there also. I contacted the rep today to see if he was available this week if I could get in with the doctor earlier and he is not. I sent my doctor an email this afternoon to let him know what is going on.

I had two SCS put in, one cervical and one thoracic, both had percutaneous leads. The leads migrated on the thoracic one within a couple of months and I was having increased pressure. They replaced those leads with paddle leads a month ago and they moved in a week...now I have this new problem...

Why do you have to get another trial??