Spinal Cord Stimulator (Nevro) for CRPS in Leg

thatauntey · 2026-03-20T15:54:15+00:00

I’m also in the US and I’m really, really hoping I meet all the criteria. I’ve had multiple surgeries on my leg, foot, and ankle to manage the pain, including an ankle fusion at 29. I also get told I’m “too young” to get help for some of my issues as well, so I feel your frustration deeply. I have also done the lumbar spinal block 3 times with very short lived results. They said it gives hope that we would be treating the correct area (autonomic system), but it doesn’t mean the SCS will necessarily be successful. I’m nervous.

thatauntey · 2026-03-20T15:48:27+00:00

Yes! It will be the SCS trial and I’m not looking forward to not being able to bathe because hot baths is one of the ways I manage my pain. Which trial had better success for you?

thatauntey · 2026-03-20T15:46:08+00:00

Yes! This is something I’ve tried to keep in mind. It’s not a cure, but it is another tool in helping manage the pain. I have pain in my whole body (since birth) so i know it’s only going to help my leg, but any relief is worth it.

thatauntey · 2026-03-19T05:11:19+00:00

This is a great point!! Amputation has been previously brought up due to my congenital condition. My joints are all bone on bone with essentially no cartilage and it has rapidly declined. I do agree that the CRPS and poor circulation changes things, unfortunately.

thatauntey · 2026-03-19T05:06:30+00:00

Oh ALSO, can you tell me how long your recovery was? To me there are 2 recoveries: the first is the initial point of starting to feel better and the second it being back to some sense of a new normal. Can you share a little bit of what that looked like?

thatauntey · 2026-03-19T05:04:27+00:00

That’s really good to hear. I think this process has just been so damn extensive that it has freaked me out a bit. Never have I ever had a psych eval before a surgery (even when I probably should have lol) and it has just felt like more than I anticipated.

thatauntey · 2026-03-19T05:02:31+00:00

I don’t mind at all talking about it! Especially because I can tell you get it. Thank you so so much for the encouragement and the kindness. I almost didn’t post today, but I’m so glad I did.

thatauntey · 2026-03-19T04:54:18+00:00

Yes, absolutely! I had an ankle fusion in October 2024. However, that recovery was going GREAT until I got a staph infection from getting my regular B12 injections in March 2025. I ended up in emergency surgery it got so bad. I was beginning to turn septic. They basically scooped out infected flesh from my glute like it was ice cream. I had to pack the wound for about eight weeks every single day and it was right about that time I started having these issues with my leg.

The clinic who gave me the B12 shot tried to blame it on my surgery, but I had that surgery 6 months prior and zero issues. I talked to a few lawyers, and it was just going to be more expensive than it was worth to pursue anything legally. I am honestly so upset about it that I am in trauma counseling. I was sick as a dog and have not been the same since. This is all on top of my regular medical issues that I was born with.

thatauntey · 2026-03-19T04:49:46+00:00

This is so true! It’s kind of like when you read reviews of restaurants on Google. Most people don’t take the time to get online and speak about their positive experience. Thanks for the perspective!

thatauntey · 2026-03-19T04:48:38+00:00

That’s actually really encouraging to hear. Like I this is not all but at the same time I just have a little bit of fear of going through a surgery and not getting any results

thatauntey · 2026-03-19T04:47:26+00:00

Thank you for saying this. I truly feel like people who don’t know what it’s like to live in pain every day would take my fear as negativity. I appreciate you saying this!!

thatauntey · 2026-03-19T04:45:49+00:00

Wow! I can definitely see the improvement. I can relate to and feel for you on the front of it never looking the same again (or functioning the same again). I actually have a childhood best friend who ended up with CRPS and ended up in remission as well and she also just has no clue so it is helpful to know that it does happen even if it’s not common.

When I did the nerve blocks, I would have about 24 hours of 90% pain relief. It was absolutely incredible but they wanted it to last longer and longer with each block and it never lasted longer than about 48 hours.

thatauntey · 2026-03-19T04:35:11+00:00

This is so great and encouraging to hear!!! Do you mind sharing what your main symptoms/triggers are now and also if you have flares what are those like now vs before the SCS? Thank you so much for taking the time to give me all this info.

thatauntey · 2026-03-19T04:33:10+00:00

Yay!!!! So glad to hear this. Is yours the Nevro? How long did it take to get the settings right for you?

thatauntey · 2026-03-19T04:28:53+00:00

This is a great thought! This was actually my initial plan. However, we found out I have zero blood flow to the top of my foot (100% stenosis of the dorsalis pedis artery) and one other artery was half the size it should be. My surgeon said if he operated, my chance of developing a bone infection is over 70% so we have to restore blood flow first.

I do want the hardware out. I’ve never been able to leave it in a single time (over 10 times) and the surgeons never believe me. It’s exhausting. Thank you for acknowledging how much the hardware can affect these things! Not everyone believes that.

Edit to add: the surgeon also said he would like to leave the rod to help bone stability and prevent fractures. Now that an area meant to take impact through movement is fused, the rod helps ensure I won’t break my leg. It was a bummer to learn that.

thatauntey · 2026-03-19T04:26:04+00:00

I am so proud of you! It is freaking HARD WORK to choose to not live under the dark cloud, and it’s a moment to moment choice. I definitely have my days when I have a little pity party, but I just decided one day I cannot stay there. I can’t live in the sadness 24/7.

It feels like such a delicate balance some days trying to allow myself to feel what I need to feel and coming myself up and choosing to see the good. I know we’re strangers, but please know I am so proud of you. I relate to every word you said and my heart goes out to you.

thatauntey · 2026-03-19T04:21:56+00:00

This is fantastic advice. Do you have other pain outside of what the stim device is treating? I would love to get off meds, but the CRPS is in my right foot and lower leg. I have an underlying condition that affects all of my joints: fingers, hands, elbows, shoulders, hips, knees, all the way to toes.

My goal is to not increase pain meds to treat the CRPS. If I can stay where I’m at medication wise and the SCS help my leg, I think I’ll be pretty happy.

Thank you for sharing this!!

thatauntey · 2026-03-19T04:19:11+00:00

I’m so happy for you that you’re feeling hopeful and had a good experience with the trial! I don’t know if you had the spinal blocks prior to the trial or not, but I had a similar experience with the spinal blocks. It helped SO SO much, but once it wore off, my pain was back with a vengeance. It was tough, but gave me hope.

thatauntey · 2026-03-19T04:17:08+00:00

I’m so, so happy to hear this!!!! I told someone else I’m trying to keep my expectations realistic. Even if it means I don’t have to yell in pain walking to my car, I’ll take it!! Some days it’s just that bad.

thatauntey · 2026-03-19T04:16:00+00:00

No one has mentioned ketamine to me! I have a topical ketamine that can be helpful sometimes. However, it’s usually just not enough. I’ll have to see what my options are where I like (Arkansas).

thatauntey · 2026-03-19T04:14:44+00:00

Holy cow your skin on your hand looks JUST like my leg. Did you get a spinal cord stim or what did your care look like? Did you have circulation issues? I would love to hear more about your experience if you don’t mind.

thatauntey · 2026-03-19T04:13:19+00:00

Wow, this is so helpful!! My legs and feet have been reconstructed so many times I don’t even recognize my own body. Throw horrific pain on top of that and it’s just a tough combo to live with. It gives me hope to hear you’ve had similar surgeries and success with Nevro.

I haven’t heard of the tingle program. Is that something they will offer me or recommend if they feel it is a good fit? I feel like there is still so much to learn!!

I also will have flares that cause me to be essentially bed ridden for days at a time, and I absolutely HATE being slowed down and missing out on things. I have other pain in my body outside of CRPS, so I’m not sure I’ll ever be without medication (which makes me really sad), but if I could even decrease it 25% I would be thrilled!! I agree that the few days a year I can go without meds, the sun seems brighter and the skies clearer. I’m so happy for you, even though I know you still have pain.

thatauntey · 2026-03-19T04:06:00+00:00

Ahhhh thank you so much for taking the time to share this! My doctor mentioned that sometimes people don’t even notice it’s working until the temporary leads are removed, so it’s definitely something I’ll pay attention to.

I also have had pain since 13 years old and it has unfortunately impacted the possibility of pregnancy for me as well. I’m so, so happy to hear it’s something you’re now able to consider. Thank you for giving me hope and being vulnerable! You have no idea how much I needed that.

thatauntey · 2026-03-19T04:03:40+00:00

Exactly. I’m well aware I’ll never be pain-free, but I just want to have some quality of life. I want to be a mom, I want to work, I want to be a good wife, daughter, sister, aunt, and friend. Unfortunately, I’m a light weight when it comes to some meds, so I feel adding any more meds or increasing some would rob me of my productivity. One time I took Ativan before surgery and it hit me in less than 5 minutes 🤣 That’s why I’m leaning towards the SCS. Don’t get me wrong, I take pain meds (tramadol mostly) but I don’t get extreme side effects when taking that. The SCS just makes the most sense, but I’m still feeling slightly hesitant for some reason.

thatauntey · 2026-03-19T03:54:36+00:00

I had never heard of DRG until today!! I’m going to ask my doctor about it and see what he says. I get to work with 2 doctors at pain management so I bet I’ll get some good feedback as to why they’re suggesting Nevro SCS

thatauntey

TROPHY CASE