Reflex Sympathetic Dystrophy (RSD and CRPS) Reflex Sympathetic Dystrophy (Complex Regional Pain Syndromes Type I) and Causalgia (Complex Regional Pain Syndromes Type II)(RSD and CRPS)


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Old 10-21-2019, 05:42 PM #1
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Default Upper Body DRG SCS

Been a long time since I posted. Got a DRG spinal cord stimulator back in December of 2017. Since recovering from that, I've been able to get back to working full time (in a sedentary job right across the street from my house). I also have RSD in both my hands and arm and other areas...but my hands have been the hardest to live with, reaching 10/10 pain by the end of every day where I feel like all the bones in my hand are being crushed.

Well...today I finally got a DRG for my upper body to help my hands. It's a 2 part surgery where they put in the permanent wires but attach to a trial battery and then in 3 weeks...assuming I get relief...they will plug the wires into the 2 open ports on my existing battery. Today was part one of the surgery. I am sore and uncomfortable...but I would say I already have 70% relief in my hands. Guys...the IV was in my right hand...and it doesn't hurt extra at all! Not even from removing the tape which usually is the worst part.

There is still pain...just like in my leg...but guys...for the first time since she was born i will be able to hold my daughter's hand without feeling like I want to die because of the pain. It's going to be a rough 9 weeks of recovery from the surgery...but I am so so so happy I was finally able to get this surgery.

I know the upper body DRG is much less common...so I just wanted to share. It's only day 1...so I hope to share more details about this journey as time goes on.
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Old 10-22-2019, 08:04 AM #2
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Quote:
Originally Posted by catra121 View Post
Been a long time since I posted. Got a DRG spinal cord stimulator back in December of 2017. Since recovering from that, I've been able to get back to working full time (in a sedentary job right across the street from my house). I also have RSD in both my hands and arm and other areas...but my hands have been the hardest to live with, reaching 10/10 pain by the end of every day where I feel like all the bones in my hand are being crushed.

Well...today I finally got a DRG for my upper body to help my hands. It's a 2 part surgery where they put in the permanent wires but attach to a trial battery and then in 3 weeks...assuming I get relief...they will plug the wires into the 2 open ports on my existing battery. Today was part one of the surgery. I am sore and uncomfortable...but I would say I already have 70% relief in my hands. Guys...the IV was in my right hand...and it doesn't hurt extra at all! Not even from removing the tape which usually is the worst part.

There is still pain...just like in my leg...but guys...for the first time since she was born i will be able to hold my daughter's hand without feeling like I want to die because of the pain. It's going to be a rough 9 weeks of recovery from the surgery...but I am so so so happy I was finally able to get this surgery.

I know the upper body DRG is much less common...so I just wanted to share. It's only day 1...so I hope to share more details about this journey as time goes on.
You are in my thoughts & prayers.

I hope it works out for you.

My neurosurgeon said this route was not an option for me (I have had this too long).

But good luck to you!
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Work related (car) accident September 21, 1995, consequences:
- chondromalacia patellae both knees
- RSD both legs (late diagnosis, almost 3 years into RSD) & spread to arms/hands as of 2008
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Old 11-04-2019, 11:47 AM #3
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that is amazing!! I am so happy for you and so glad you shared the results with us. Holding your sweet little girl's hand means everything I'm sure.
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Old 11-04-2019, 07:26 PM #4
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Hi Catra,

Thanks for sharing that positive update with us. We like those kind!

All the best to you. Keep on keeping on.....
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Old 12-27-2020, 01:05 PM #5
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How are you doing today? I hope that you are still able to hold your Daughters hand
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Old 12-28-2020, 01:14 PM #6
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That is so amazing! I'm so glad it's working for you.

So once you have the DRG do you still take meds for CRPS or no? I'm a bit confused as to how all of that works. Mine has spread so far that I'm apparently not a candidate anyways but curious none the less.
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Old 01-02-2021, 06:46 AM #7
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Quote:
Originally Posted by annabanana123 View Post
That is so amazing! I'm so glad it's working for you.

So once you have the DRG do you still take meds for CRPS or no? I'm a bit confused as to how all of that works. Mine has spread so far that I'm apparently not a candidate anyways but curious none the less.
Due to it being so ingrained my neurosurgeon also thought better of it than to recommend any kind of implantation device. It was just... too late.
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All the best, Marleen
=====================
Work related (car) accident September 21, 1995, consequences:
- chondromalacia patellae both knees
- RSD both legs (late diagnosis, almost 3 years into RSD) & spread to arms/hands as of 2008
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Old 02-03-2021, 01:41 PM #8
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Quote:
Originally Posted by annabanana123 View Post
That is so amazing! I'm so glad it's working for you.

So once you have the DRG do you still take meds for CRPS or no? I'm a bit confused as to how all of that works. Mine has spread so far that I'm apparently not a candidate anyways but curious none the less.
I'm sorry...it's been quite a while since I visited this page.

I don't take meds for my CRPS except that I use Lidocaine patches and heat patches as needed. Unfortunately I had bad side effects from most of the common ones that offset the minimal relief they gave me and narcotic pain meds don't seem to touch my CRPS pain at all (but they help for acute pain like when I was recovering from surgery).

I still use the Lidocaine patches and heat patches for my CRPS but it's mostly in the areas that the stimulator doesn't help. My upper left leg, left shoulder, and both my forearms are the most common places I need to use the patches.

The stimulator has been life changing in terms of the functionality it has given me back....but I still have the pain 24/7 and in the areas that the stimulator doesn't help it's still a baseline of 8/10...so it's still rough. But I am so grateful for the relief I have gotten from the stimulators.
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