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.

Tomorrow is the big day! My check in time is 7:45am...and they said if everything runs on time that I should be out by noon. Fingers crossed it all goes smoothly!

catra,

You will be in my thoughts and prayers that this procedure will go well and will result in significant pain relief.

Wishing for you the very best!

brightcloud

So...I'm home now. Things ran a little behind but not too bad. I was home by 2 instead of noon. The surgery itself took about 2 hours.

Before they took me back they gave me an IV, a Norco, and 2 Tylenol. They gave me if sedation and woke me up in the middle to ask me if I could feel the tingling and where. I have a very distinct memory of the doctor saying at the end to put me back under and that he was going to cut and then a woman's voice saying oh no you're not, not yet. And I totally felt him start cutting...but then was out. When I came back out of it I was in the recovery room and had to lie flat for about 30 mins before they let me sit up and eat/drink something (I had to fast since midnight).

Then it took a LONG time for the reo from st judes to come and program my unit because she was in surgery with someone else getting a stimulator. This time the programming took a little longer than last time. I have just a vague memory from the operating room but I think they were having issues with coverage there too. Anyway...this time I got an iPod touch and an icloud account. The iPod is in an otterbox...my new beat friend.

Bottom line...pain is a 2 right now in my leg. A TWO. I walked out instead of using the wheelchair. My back is sore and they have a wrap brace around me. They wanted to put ice packs on but I said no...but they said I may still want to use it for pressure and I like it for that...plus it helps me to not stretch or bend too much which is a plus.

I go back on 11 day for a check up. Restrictions will be for 3-6 weeks according to the doctors. Slightly annoyed that what the Drs said and what is on various disc arge papers don't all match...but will error on the side of caution with everything and ask any questions at my follow up or when they call tomorrow if anything comes up.

I was given 10 days of antibiotics and 30 Norco for the back pain. The back pain right now is soreness...but everyone assured me it will be a lot worse when the lidocaine wears off. But I can WALK with my leg pain only at a 2 right now!

All I can say is...AAAAAHHHHHHH! All day yesterday the pain in my back was minimal...not bad at all and I didn't take any Norco except right before bed because I knew trying to sleep would be an issue. Which is was...hard to get comfy and the experiment of trying to sleep in the recliner a failed one. Sleeping on my stomach was the only thing that worked. Unfortunately I'm a flopper when I sleep. Usually I am constantly flopping from one side to the next. Well...in my sleep I flopped...and then...i was not sleeping any more. The profanity and screams...glad I didn't wake anyone up. Getting off the couch was...difficult. I guess this is the pain they kept talking about. Of course...once I rolled off the couch I started coughing and it was like...NOOOOO...dont cough! That hurts even more. So now I am awake and in AGONY and waiting for these pain meds to kick in.

In happier news...i noticed that the tingling with the stimulator is very positional. When walking or standing or with legs bent while sitting it was perfect but reaching for anything (even scratching my head) or straightening my legs while sitting I could feel tingling. So when I was done walking for the night I was able to turn the stim way down (to maybe half what I had it on during the day)...and I'm still getting excellent relief in my leg. When I start walking around and moving later today then I will bump it back up again.

One feature I like about the controller is that (I have 2 leads that cover different areas so my leg is covered from the knee down) I can "group" the two leads together and adjust as a group all at once. They can also be adjusted individually which was good during the day as I was moving at get the right settings for each area, but at night when I just wanted to bump it all down it was so simple to group it all together and bump it all down. Then it will be easy to bump it up in the morning.

Speaking of the controller...its an iPod touch with all the normal iPod touch stuff including apps, camera, safari, etc. I don't plan to junk it up with anything else...but I did do some playing around on it since I don't have an iPhone or an iPod touch. Definitely interesting...but I'm hoping my classic iPod never dies...lol...i would miss the simplicity of it and massive storage. ;) I have not yet determined a good way to carry two phones essentially. They don't fit in my current purse as it...so I will have to figure something out that's not awkward or prone to me forgetting one or the other.

Ok...think the meds are finally starting to kick in. Don't think I will get anymore sleep today but I will try to still rest a little and maybe pull out my stitching and listen to a Book (currently listening to The Godfather).

So day 2 was a rough one with the back pain. Not gonna lie...sitting was rough and attempting to get up from sitting was so painful I tried and failed numerous times to get up and suffered a great deal.

BUT...when I was up and walking it was much better so I did a lot of that today...just laps around the first floor. Total steps =2942...and my pain in my leg stayed at a 2/10.

So...as bad as this back pain is from the implant...that will heal and the relief in my leg is just incredible. A TWO...I just can't get over that. My legs and feet are sore from all the walking...but to not have the RSD pain in my leg above a 2 is just...I don't think I could have imagined that kind if relief before the trial and to have it be so good today is just...it almost brings me to tears.

Day 3 so far...pretty much the same as day 2. I slept in the recliner with feet up but the back was not leaned back. I was kind of at an angle in the large chair and managed almost 3 hours of sleep that way...but at least I didn't roll over or flop so I didn't wake up screaming.

I did feel super overheated and sweaty this morning...honestly thought I was going to pass out and ended up laying face down on the floor for about an hour until that passed. I think maybe just too many layers or something? I don't have a fever...so I don't think it's an infection and it passed with a little rest...but that was a bit scary.

My big struggle right now is sitting, getting up from sitting, laying down, etc. Up and walking the pain in my back is tolerable but my legs just can't hold me up all day yet after years of being mostly sedentary. So I am really struggling to find a spot that works for me to rest in.

My mom came and picked me up to take me to the store. I was happy to get out...but riding in the car sucked. I could not drive right now. So anyone considering this...be prepared to not drive for a while. Again...did really well with the walking...feet and legs just got tired after a while.

This is so amazing! I can't imagine a 2.... I know the back pain is bad now, but like you said, it will heal. I bet trying not to twist and turn is hard though...