Wishing you good luck with that.

Keep us posted! :)

My doctor went to DRG training about a year ago with a doctor in Texas (I think) that helped develop the DRG procedure. He said that he no longer advises using DRG in for upper extremities because the space is very small and the leads used for DRG are meant to scar down which can cause a lot of problems (and permanent damage) if they need to be removed.

Has anyone else had a DRG put in an upper extremity? What was your experience?

I had planned on getting one but once I started looking in to the problems related to putting it in the upper extremity I got worried. I did get another opinion from a second pain specialist that mirrored what the doctor from Texas said.

I really haven't found any information at all on upper body DRG...so I'm kind of relying heavily on my own doctor's opinion at this point because for me it's either the DRG or the regular SCS. I don't really want a traditional SCS for a variety of reasons...like I don't think it will give me lasting relief past a few months to a year, pain relief at best will probably be 50%, it would require an entire second unit be implanted, etc. Or I can try the DRG which will cover less area than the SCS but can hopefully target where the pain is the worst (elbows to hands), pain relief could be up to 70-80%, can run leads off the unit I already have implanted, and DRG hasn't shown the same issues with people getting used to it/diminishing pain relief after 3 months to a year (hasn't been around as long though so it's still a risk).

I know it's a gamble...but in this case it's a gamble I am willing to take with my eyes wide open. Because quite frankly...I'm not getting relief from anything else and have a baseline of 8 pain and a steady 9-10 for the past almost 2 months now...I just can't take it anymore. I feel like I HAVE to try...and that's ME saying that...not my doctor. Don't get me wrong...I think my doctor jumps at the chance to do anything DRG related because it's new, they're still doing trials with it, etc. One thing I like about him is that he's very blunt about certain things and doesn't over promise...at least I've never felt that way.

So maybe I'll be one of the first to really document the experience with upper body DRG on the internet and share the experience so it's out there for people. DRG in the US is still really new and I know they are trying all sorts of things including a completely wireless system and other advances in the technology. Who knows what it will look like a year from now, 2 years from now, or 5 years from now? But one of the reasons I share my experiences here is so others know and have an idea....good, bad, and ugly.

I really hope that the DRG in the upper body works and can provide me relief like the I got in my leg. The pain is not gone and still flares up...but it's SIGNIFICANTLY better...like...life changing better...and if I can get even a fraction of that relief in my hands I will jump at the chance. I also know...this stuff is not for everyone. Everyone has to make their own treatment choices and should do so in an informed way with eyes wide open to risks and if that's worth it for them. 5 years ago I never would have even considered an SCS...but things change, pain levels change, etc and then it's time to look at other options. I would give almost anything to go back to when my pain was a 6 baseline and I didn't need any of this stuff...even if the upper body DRG works I would still trade to go back to baseline 6 with no need for the DRG because overall life was better for me. But stuff happens...fell off a stupid ladder at work and now this is my life. Now I will have to live my life with this THING in me that does help my pain but will impact so many other things in my life...always worrying about what if it stops working, what if I want to have another baby (I do...but don't know if it will be worth the risk to the DRG), what about the battery replacements every 5-7 years and constant recovery from that for the rest of my life (I'm only 34...so hopefully I have a good long while left in me), travelling, what if I have other injuries that damage the DRG or can't be repaired because of the DRG, plus a million other things I am sure I'm not even thinking about.

Anyway...that's just me rambling on and getting my thoughts out there...not directed at anyone in particular...just where the thoughts took me. Off to go eat something and then rest for a while.

I appreciate your insight. I'll be following to see how the upper body DRG works for you. I totally understand wanting to go back to a "6." I got great relief from ketamine/lidocaine infusion (ketamine alone did not help). The pain wasn't gone, but I was a little more functional. I'm in the whole workman's comp never ending vortex too. They will not pay for anything even though they have accepted my injury and CRPS. I pay $1200 for each ketamine infusion. I was able to scrape it together until WC cut my pay by 60% last week. My lawyer estimates 4 more years until I get through appeals. Now I'm totally screwed.

I hear your desperation and I totally get it.

I am so sorry to hear of your struggles. WC is vile to deal with and I am hoping to never have to deal with them ever again once this current nonsense is done with. I honestly don't know if it's a curse or a blessing that they aren't handling anything with my case because at least I don't have to deal with them interfering with my treatment, cutting off pay, etc...but unless I settle my case it will likely be 5+ years before my case is resolved through trial (that includes appeals and stuff that my lawyer is anticipating). They have "won" in the sense that at this point I will accept a far smaller settlement than I really should just to be done with it all and put it behind me. I know I'm lucky that we've been able to afford treatments and such with regular insurance...but it's all so stressful to deal with. The latest nonsense from my employer has caused me great anxiety and dress causing bad flares and a trip to the ER with a panic attack. I feel so embarrassed to be at this point...I wish I was stronger...but CRPS for 9 years and uncontrolled terrible pain for 2.5 years and almost no sleep has all combined to just rob me of the strength to push on through it all. I just want to put all that behind me at this point and move on with my life. All that just to say...I'm so sorry and wish you all the best and hope you are able to find some relief soon.

Catra,

I think the anxiety caused by WC worsens CRPS. In order to beat us, they beat us into submission. I wonder how many go full body from this treatment.

I am sorry that you have so much on your plate.

Now I have two limbs involved, confirmed. Two limbs confirmed progressing. And multiple doctors’ letters confirming I am disabled.

WC cut my disability, which makes no sense since I received more when I only had one confirmed CRPS limb. From the very start I always believed both limbs were involved, but the WC doctor said, “Don’t say you have a spread, the insurance companies don’t like it,” when I told him I knew it was in both feet. How do they get away with this?

I wish I had been more aggressive about documenting, but I thought it made no difference, because I thought I was going into remission.

I am still so glad medication is working for me. Don't get me wrong there is residual pain there, but at least the most painful part is under control.

I don't think I ever could go for an implant and my neurosurgeon even is dead set against it for me (because I have had CRPS for so long now), it wouldn't be the right option for me, he said.

So yeah.

I am glad you are getting on with it, though. It seems to be doing fine for you.

I wish my CRPS responded well to medications but it never has...and what I did respond to in the beginning stopped working years ago. I wish there was a treatment that universally worked for all of us and was easy..

Hi Catra. I just wanted to let you know that I was thinking of you and praying that you are continuing to feel relief from your RSD pain with the help of the DRG.

I was wondering how you were doing? :)