CRPS Foot/Ankle & Nevro HF10 SCS
 

Hi, I have CRPS in my left foot and ankle resulting from multiple surgeries. My symptoms are burning toes and top of foot as well as deep crippling ache in my heel and ankle. I wrecked my other ankle and ended up requiring surgeries and the CRPS spread. I trailed a Medtronic stimulator a few years ago and was unable to get relief or the buzzing down into my toes. I just finished trailing the Nevro HF10 stimulator and have decided to go forward with the full implant.

Has anyone else with CRPS in feet/ankles had success?

We attempted to change my pain medication about three weeks before the trial due to some side effects I was having. Unfortunately, no other medicine worked and I wasn't able to get back onto my original meds until the same week as the trial. This made it very difficult to determine whether the relief was from the meds or the SCS. I was hoping that I would have an immediate return of discomfort after the trial but it didn't happen. Instead, it was a slow return but more importantly, I realized that during my trial, I was able to get up and move without the constant discomfort (different from pain) that I always have but don't really think about. The SCS did seem to lessen the burning but I expected it to be more of a black and white shut off of symptoms. Instead, it was almost a reduction at the subconscious level.

Does this make sense to anyone?

I really hope I'm making the right decision.

Thank you!

Hi Lurchy22, and welcome back to the forum!

There are not a whole lot of us CRPS sufferers on here that have had much success with any of the SCS units. I decided to try the Nevro Senza out myself earlier this year, only to have an increase in pain, and a migration of symptoms going from my foot and ankle up through that same leg and starting down the other. If you are interested, you can read my post about it herehttp://www.neurotalk.org/reflex-symp...-tomorrow.html. I do know that Catra121 is also getting ready to go in for her trial, but she is going in for a DRG stimulator instead. I really hope it works out well for her. She has so much going on with life right now, and it would be nice to see her have some positive results.

I hope you don't let my experience with the trial scare you away from moving forward with this. It is a great unit, and I just happened to be one of the few unlucky ones that it did not work for. I wish you the best no matter what decision you make. Let us know how it goes for you if you do go ahead with the permanent device.

Hi Purplefoot,

I'm sorry to hear it didn't work for you. I'm located in the US and the HF10 was just approved this year (as was DRG). My CRPS has gotten so much worse in the last ten months and injections are no longer providing much relief. The side effects from the meds (Methadone) are so severe that I really need to do anything possible to minimize the dosage. If the SCS will allow me to cut it in half like during the trial then it will totally be worthwhile.

I'm a little concerned about the procedure as even before I started this journey we had problems with pain control after my initial injury. Pain meds just aren't very effective for me. It has gotten to the point that the anesthesiologist has to knock me out with Ketamine after my last few surgeries because the iv pain meds don't do much. The SCS surgery here is done outpatient and I'm worried that I will be in agony when the surgical anesthetic wears off. Anyone here have the procedure go well and able to share their thoughts on how painful it is?

Thanks!

My initial implant (although not without trouble) was relatively well controlled with medication and seemed pain free almost (in comparison to other procedures I had previously) the adjustment 9 months later was a different story, extremely excruciating. But that's because they had difficulties with the first threading of leads. Good luck.

I do gave CRPS so my exp is probably very different xxxx:hug:

Please let me know how this works for you. I have CRPS in my entire left leg and in my rib cage/thoracic area. I am going to be undergoing a trial for the new BURST stimulator from St. Jude (it was just FDA approved a few weeks ago) and has been shown to be very effective in people with CRPS. I was hoping to try out the DRG, but I have a cage in my lumbar spine from a prior back surgery and they would not be able to get to the areas needed to cover my pain. Also, they are concerned about the SCS not covering my ribcage pain. If it does not work, then my last option is a drug pump, which I am not too excited about, but if it comes down to it, I may have to go with it, as I have exhausted all other pain relief options (including ketamine infusions).

Please keep us posted on how you are doing. I REALLY hope the SCS works for you!

When I had my Nevro SCS implanted it was outpatient as well. I went in 1st thing in the morning and I was home by early afternoon. Ice packs for a few days and Oxy for the first day and ibubrophen after that.