Spinal Cord/Neuro Stimulators
I would love to hear from the community about experiences with SCS. I did a trial for the Nevro back in 2019 that was unsuccessful. In 2023 I did a trial with the Abbott Eterna and had great results so I had the permanent implant in May of 2023. My doctor wanted me to have per cutaneous leads, while the surgeon wanted to do paddle leads. The surgeon ultimately did what my doctor asked and I had amazing relief for about 3 months. I have spent the last 9 months having it reprogrammed over and over with no relief. My doctor sent me back to the surgeon in April of this year and he wants to take it out and replace the leads with the paddles he originally wanted. I will have that surgery Monday June 3rd. This surgery is more invasive as they have to cut out bone to place these leads, but I’m absolutely desperate for pain relief that I don’t care. My migraines began when I was 16 (I’m coming up on my 45th birthday) and they were episodic. I was assaulted in 2011 and they became chronic after that. I have done ALL the medications, as well as the CGRP shots, I’ve done 2 inpatient lidocaine infusions, and an inpatient Ketamine infusion, an outpatient Vyepti infusion and several 2 day “migraine cocktail” infusions at Jefferson hospital in Philadelphia. I did a DHE infusion at my local hospital. I’ve done Botox, trigger point and occipital injections. I’ve done PT, had dry needling, seen chiropractors… I could go on and on, as I’m sure many others can as well. This implant was kind of my last option so I’m praying these new leads will work. I’d love to hear from others who have had similar experiences and how they are doing now. I can’t wait to hear from you!
Hi
- So good to hear from you. My hope is that if there is anyone in the community who has experience with spinal cord stimulators (SCS) that they will chime in shortly! It sounds like from your post that you've had a fairly well-rounded approach to treatment your migraines. I'm noticing a combination of pharmacological interventions, and non-pharmacological ones like the PT, dry needling, and chiro, which is great, even if they ultimately didn't work out for you. We never know until we try!
I also hope that this next surgery brings you the much-needed relief you need. And if you'd like, please do keep us in the loop on how your surgery goes on June 3rd, 2024. I can imagine many people in the community would be interested in hearing how it goes.
Warmly, - Cody (Team Member)
Hello
- It's been a bit since you've gone through your procedure, and I wonder how you've been. Are you tolerating the paddles of the SCS? Have you gotten any relief? I had a trial of SCS but it was for orthopedic neck pain rather than aimed toward migraine relief. I was very disappointed when the trial failed. It was a "last hope" situation as well. I feel like nothing will help and I have to endure this pain for a lifetime. I have undergone so many different treatment options that have failed or barely given relief. I am currently struggling with spine pain as well as increased migraine activity. I would love it if others chimed in and left their experience. I'm sending you all the positive vibes for these new leads to bring you relief. It’s important to hold onto hope and keep exploring options as you have. There is strength in your perseverance; you are inspiring. Thoughtfully, Rebecca (team member) Hi Rebecca! So I had the revision on June 3rd to place the paddle leads. The pain and inflammation has been so bad that they’ve had to change my pain meds and muscle relaxers as well as putting me on a steroid. That was 5 days ago, I’m definitely getting better, but very slowly. With that being said they haven’t been able to turn the device on yet ☹️. You said you failed a trial… which one? I failed one back in 2019 and then we tried a different company last year. Have you considered doing a trial with a different device? 
I am so sorry that you have not had it turned on yet. I hope with all the new medication added, you'll get some pain relief soon.
I have not had one of these stimulators implanted, but had a gastric stimulator in my right abdomen. I had one for 5 years. The pain was unbearable. I couldn't stand up straight. The settings caused my abdominal muscles to jerk my abdomen. I even had painful jerks if I coughed, moved wrong, or, sometimes talked. I got it replaced after 5 years because the battery died. The second was less painful, but still bothered me a lot. We could not even keep it turned on.
I opted, after having it for two years, to get the second one removed.
I do have spinal issues and they want to implant a spinal stimulator, but, I am very hesitant to get one.
I would however, consider a pain pump as I hope it would help my migraines and neck/spinal pain.
Sending you my best for pain relief and better days. (Tonya, team member).
