there are others out there
 

I've joined tonight awake at 2am again! I cant believe so many others are out there in a world like mine- 5 yrs medical merry go round, boston scientific peripheral nerve stimulator in with 4 leads still on high dose opiates are soooo frustrated. Thank you all for sharing your stories xx

Hello Lynny!
 

Thank you for hopping aboard!
I hope you decide to stick around and share more about your experience.
Are you getting along ok with your SCS? I still take pain meds, which is frustrating, but at least I'm not as bad off as I once was. I get about 70-75% relief with the stim, so I won't complain.
You mention you are still on high-dose meds. Does this mean you don't get much relief from your unit?

It's great to have you! You'll find many caring people here

Rae
:grouphug:

Doggone It Anyhow!!!!
 

Oh hey Lynny..... I feel your frustration at not gaining relief.... if any at all. After all, if you are still on high dosage opiates to manage pain I am wondering whether you have attained any relief from your unit. You mention four leads were implanted... with me there were two paddles placed and our results are markedly different! Were so many leads used in your situation due to a broad range of application which was attempted, such as trigeminal neuralgia and arm pain or both thoracic and lumbar pain? It just seems to me from an application perspective, the attempt may have been too aggressive to cover more area than is achievable with a single generator---- assuming that is your situation. My two paddles connect to a single generator dosing me adequately from the waist down as my paddle implant is at T8/T9.

I really feel for you Lynny!!
Prayin,
Mark56:grouphug:

Keywords: Nevro complaint. I hope the Nevro stimulator does work for people who try it. I had a Nevro device implanted at midwestern pain practice who implanted many of these devices. My comment is not about this practice, but it is an urgent caution to patients about working with Nevro. Nevro is a big corporate practice here, with strong corporate interests. Please keep in mind that Nevro is a for-profit enterprise. Nevro counts me among its 90% success rate. However, the device never worked for me. That was explained in advance as a possibility. I accepted it. (The external test device worked great for me, but once it was implanted, I didn't have much luck.). However, Nevro's records do not match my handwritten notes from the time. They hounded me for months after it was clear the device wasn't working for me. They wouldn't leave me alone. I met with them in clinical settings time after time. I haven't used it for years, and it is now preventing me from having an MRI on an unrelated part of my body. I'm going to have to have it surgically removed, and addressing my new injury is going to take months to schedule (the university hospital has said at least 3 months; the surgeon may need more). Nevro is blaming me for not continuing to use their device. When I called the doctor's office to schedule having taken it out, the nurse said, "Have you talked to the manufacturers?" I said, "Yes, they're very angry at me." She replied, "Yes, that's how it usually goes when people want these out." I regret the device immensely, despite the pain I was in.