My appointment yesterday to get the leads removed from the trial went pretty well. They were running WAY behind...doctor didn't come into the room until 2 hours after my scheduled appointment time (this wasn't my regular doctor but the doctor that was just there that day since it's not my doctor's normal day but the leads had to come out). I did jump off about 6 inches off the table when they pulled one of the leads due to a shock in the back of my left thigh...that was weird and I felt a sort of buzzing sensation for a few hours after but it seems gone now. Pulling the tape off...awful.

One unexpected thing...I have a burn where the one cord was and where the rectangular unit was taped to my back (not where the tape was...but where these things were touching my skin). They said they are friction burns...so not from heat off the unit but more from the rubbing against my skin for 10 days. So those spots are a extra tender today but not too bad. The doctor didn't seem at all surprised or concerned so I am guessing this is normal...but I was surprised.

The rep from St. Jude's went over a few more details about the permanent implant including that I will be getting a non-rechargeable unit...which I am happy about because I am so sensitive to the touch that I was worried about how I would do with a rechargeable unit because I know some people have issues with sensitivity due to the charging. The unit will be placed on the right side of my back.

Very excited...less than 4 weeks until my surgery and...hopefully...a treatment that provides me with consistent GOOD relief!

Catra, great that your trial went well. A non- rechargeable unit sounds preferable as recharging is a nuisance and I was always worried about forgetting to recharge and damaging the battery. I had a scs medtronic unit for 8 yrs. I had it taken out because eventually my brain had adapted and I wasn't getting the benefit any more. They did offer me a trial of a high frequency unit (different brain input) but I had major issues with battery placement. So they are putting the battery in your back? I'm assuming that's you're upper buttock. I had mine there, partly in case I had a 2nd child and also because I am small and I was advised it is easier for sitting in short people so it doesn't hit the ribs. With me it did eventually cause some pain/pressure care issues with battery migration/not enough fat covering it but batteries are a bit smaller now.There are pros and cons wherever you put the battery. I can't believe they took the leads out with you awake especially as you have CRPS! You should be at least given that medication where you can't remember anything later, is it conscious sedation or twilight sedation, relaxant- something!

Good luck with the next stage, Booklover

I had sedation when they put the leads in but not when they came out...it was just sit on the bed in the room and they pulled them out. That one shock and then the wiping with alcohol after were the worst bits. Having been through it I actually would be surprised if they gave sedation for that...and I'm someone who has the dentist put me under sedation...lol. Thanks for the support and sharing your experience with me.

Catra, how are you doing during this period that your stimulator is out and when do you have the permanent one implanted? Thank you for posting your experience. I am in the midst of a drg trial. My pain was slowly creeping up today.

The pain is rough after having that small period of relief. Thankfully...when the trial was over it took about 16 hours for the pain to creep up to the pre-DRG levels. I was worried it would be like BAM the pain is back but it was gradual over the course of the day. But after a week of MUCH lower pain levels it's hard to swallow this level of pain again. I get the permanent one two weeks from yesterday...it feels like forever away still but I am trying to get things like Christmas shopping and wrapping done before then because I will have the restrictions of no stretching, reaching, lifting, etc and I want to have as much done as possible before then with that stuff. But every day is a struggle now. Not that it wasn't before the DRG...but the pain relief was so good during the trial that it's just hard to have the pain back. But I know it will go down again in two weeks so I am just focused on that and on getting things ready for then.

I did have one flare up during the trial where the pain went up but it only lasted a day and I was able to adjust the levels up to help a little.

Good luck to you...I hope it works out and you get some good relief! I've also heard that sometimes having them reprogram the unit can increase relief. Have you called your rep?

I did contact the rep. by text. I did move the settings up and down but the amount of current?? to relieve the pain increased the tingling and needle feeling.

I go in tomorrow to have it removed so maybe the rep can shed some light on the pain increase.

I have cold crps and the drg hasn't really changed the very cold feeling in my foot. Did your extremities feel warmer while in the trial?

My limbs used to be cold all the time but now that only happens during flare ups where the area flaring gets ice cold...though according to dr measurements there is always a slight difference where the rsd limbs are colder. Since my pain was so much lower I didn't notice the cold at all except on the one day I flared. I'm surprised the rep didn't come out to change your settings or have you come in. Mine called every day to check in and I went in 3 days after the trial started for a check in but since I was getting good relief they didn't need to make any adjustments. I have heard some stories where people just had ok relief but after getting it adjusted it was amazing. But like everything else I suppose with CRPS no treatment is going to work the dame for everyone. I hope you get some answers from the rep and dr.