Crps and Spinal Stimulation
 

Hi there I had a major car accident when I was 18 and Have had some sort of problems ever since over the last 5 years it has been horrible. I had a shoulder surgery for some unknown pain I had been having come to find out I probably didn't need that surgery. The dr wouldn't listen to me after surgery and told me he had fixed me my shoulder and there was nothing wrong with me. It hurt more after surgery than before I was so fusterated I went back to my primary dr and told him what had happened, I like him he listens to you not just rushing you out the door to the next appointment. He tried a few injections that didn't help and decided to refer to pain management I was scared to go to pain management I am not a drug seeker and have always been told or have herd horror stories about the pain management doctors. So after w few more months of pain I decided that it couldn't hurt to go. I had to jump through some hoops, drug test contracts etc at first but then it was good the office staff is amazing and this dr seemed like he really did care and believe that something was wrong with me. I had every test done and was sent to a neru doctor to get the test where they stick the needles and read your nerves. They decided that I have CRPS in my neck left shoulder and left arm. I throw or let go of things for no reason my son and family even jokes about it because it is so random. Went back to pain dr and we decided to try injections to try and numb the nerves so I could get some pain relief. they only worked a few times for a couple hours at a time, so next they burned the nerves in my neck thinking that would make the pain stop that didn't last either, on to getting injections through the front of my neck one a week for 6 weeks didn't make it better. Dr suggested I try the stimulater as a lat resort to my problem. It could give me some relief and I could be back to doing physical activity and so on. This made me very excited! I am normally a physical person and that has went down hill more and more as this all has went on. I agreed to try the trail and right away was having problems because this is in my neck the leads had a lot of verance when I moved or breathed it would shock the wrong side of my body. they readjusted the leads and finally said that when it was permanently implanted that would be much better because it would have scare tissue to hold it in lace. I wouldn't have the issue with it shocking the wrong side. After reading many things on the internet about this and all the success stories I decided I didn't have anything to loose I wanted to feel better and was excited to get my implant in Dec of 2011!
Well the surgery itself was horrible and when I did realize where they put the battery pack it is by my spine not in the "love handle" where i was told it would be implanted. I have had problem after problem and disappointment with this. I have had my leads adjusted numerous times since December it never seems to make a difference I can't sit completely still and not breath. Sometimes I know think my pain dr and the rep think I am crazy. Finally had them take an x ray and the one lead is in the middle of my neck and that's why it keeps shocking my right side so easily. Dr said he could move the battery pack, I haven't been able to sit back in a chair, or lay flat since surgery because it is so sensitive you can't even touch me there. and dr also said he could add another lead to try and get more coverage or take it all out. I am not sure what to do at this point I have been let down and am so disappointed with this whole thing I don't want to give up on it but I also don't want to do this and then have it anyway. I am so confused and though I was crazy in till reading some of the experiences on here so glad to know that I am not the only one. :o

Hello!
 

And WELCOME to NT! :hug:

I'm so sorry about your accident and the RSD setting in :(
It is a very frustrating condition to battle, I know.
You've found a great place for support and understanding.
I felt very alone with my battle with PN/RSD and it was hard to find people to talk to about the SCS when I was getting mine.
Thank God for this place!

I'm sorry about the troubles you've been having with the SCS. We have a forum here specific to SCS discussion. Here's the link to take you there if you want to talk with others. There's lots of support there!

http://neurotalk.psychcentral.com/fo...prune=-1&f=118

Also, check out the RSD forum! It's amazing how many people suffer this unfortunate condition. Many caring folks who can embrace what you've been going thru.

http://neurotalk.psychcentral.com/fo...sprune=-1&f=21

Caring,
Rae
:grouphug:

Continue to work with the SCS
 

My story is much more simple than yours and I am sorry for your ongoing frustration. My RSD is in my left foot so my leads are in my back. L2 and L3 I think. After multiple LSB injections it was decided that they were effective enough but not long lasting. So I was a good candidate for SCS. My trial lasted 6 days and it made so much difference that I had the permanent one implanted within the week. It takes a lot of work with your rep to get the right programming for you. Somedays I need one program and some days I need a different one. And then you still need to adjust the intensity. I think that I have seven different programs at this time. But I do meet with my rep every 6-12 mos for programming changes. As the scar tissues forms and your body adjusts your programs need changed. Don't hesitate to set up a regular appt with your rep. Keep notes of how your programs are working for you. If you can tell him what works and what doesn't he can make improvements for you.

I know it ks frustrating right now but the potential to drastically reduce your pain is within your reach. Keep working at it until it meets your needs.

Good Luck!

Greetings!!