DRG stimulator vs nerve decompression surgery

[rimrock]

Have has anyone had a situation where a doctor explained both the DRG stimulator trial and nerve decompression surgery? Which did the doctor suggest be done first?

[Violet M]

It hasn't happened to me, but if it did, I would want to try to get as accurate a diagnosis as possible, and if everything was pointing to a nerve entrapment and if the pain was seriously affecting my quality of life, to me it would be worth it to try to fix the underlying cause by having surgery, rather than just masking the pain. But you could make the argument that DRG neurostimulation is less invasive and probably less risky, so maybe you could avoid the risks associated with PNE surgery by doing the neurostimulator. I think that your decision would depend partly on 1. how likely is it that your nerve is entrapped, 2. how severe is your pain, 3. what your personal preference is, 4. whether the neurostimulator can be removed if it makes you worse. But hopefully your doctor will be able to give you some expert guidance on this and hopefully some other forum members will have more experience with this than me and be able to answer your question better.

Violet

[rimrock]

One of the doctors implied that it was highly unlikely that I have PN due to the fact that I was sitting. Does that make sense?

Sitting makes my pain worse but not so much that I can't sit at all.

For work, I sit rather than stand most of the time even though I have a standing desk at my work-from-home office. I just don't like standing. I do however find myself sometimes kneeling at my desk to take the pressure off of my pelvic area.

[April]

Hi Rimrock,

What Violet describes matches how I approached it. In the year before my surgery, I was investigating a stimulator. But then I got info that made me more convinced that I had PNE: I got another MRI using the Potter protocol and the radiologist found signs consistent with pne (which is unusual), and the two surgeons I spoke to both thought my case history sounded like nerve entrapment. So, once I had info that made me think it was pne, I didn't hesitate to get the surgery.

You say your doctor doesn't think you have pne because you are able sit? Just having an increase in pain is a sign of pn. In addition, not every pn patient has pain sitting. I can sit without extra pain, and I always could, even when I was at my worst. Hibner said he thought that people with a small pelvis like mine actually get some pain reduction when sitting because sitting opens up the ligaments. And there is enough variation with this problem that there may be other reasons why someone with pn could sit.

April

[rimrock]

Thank you Violet and April

I should clarify. They were two different doctors. The first doctor said he prefers to go to the nerve decompression surgery first and then do the DRG stimulator if surgery fails. He's out-of-state. I just had a tele-visit with him. I'm going to see him in-person in November.

The second doctor was the one who said that I probably don't have pudendal neuralgia if I can sit.

Thanks again.

[Violet M]

Hi Rimrock,

How much you can sit varies from patient to patient. I was able to sit in the early stages of PNE. Eventually it became worse over time but even then, I could sit for short periods of time. Sometimes I would sit more on one butt cheek than the other because the pain was worse on one side.

Good luck with your appointment.

Violet

[bartland]

Hi Rimrock,

I'm facing this exact decision right now, and it feels like the hardest decision of my life. What choice did you end up making: DRG or surgery?

Thanks,
Bart