Health Organization for Pudendal Education

I recently had an appointment with Dr. Marvel in Annapolis, and he suggested neurostimulation.

It seems that his approach places the leads directly on the pudendal nerve. On this forum I also see a lot of discussion about lead placement on the S2-S4 nerve roots. I also see some discussion about Dorsal Root Ganglion (DRG). Is that a type of device or lead placement (or both?). I also saw an interview with Dr. Attaman from a few years ago about targeting the conus medallaris area.

Can somebody help me understand the advantages/disadvantages of the different lead placements, and the best bet for my symptoms? My main symptom is pain in the left underside of the scrotum and the perineum. I don't have pain in the penis or anus, and I haven't experienced any incontinence or sexual dysfunction.

Thanks,
RC

My understanding from reading the literature is that leads placed directly on the pudendal nerve are more effective for continence issues than for pain. Dr. Kenneth Peters published on this topic. DRG neurostimulation refers to the location of the leads -- placed at the dorsal root ganglion (not the same as the dorsal nerve of the penis). This is a somewhat newer procedure that is showing promise for patients with chronic pelvic pain. You can read Kit's posts about it on the forum. He had a good outcome with it but not everyone does. Dr. Corey Hunter in NY does this but you may also be able to find other doctors who do. I think he may have pioneered it. You can go to pubmed to find literature on neurostimulation at the conus medullaris. There was an article published awhile back showing some promise with this placement. I don't remember anyone posting on the forum about it. Another option is the retrograde placement where instead of a regular spinal cord stimulator placement you can have the leads placed deeper in the sacrum. You can read Amanda's posts on this topic. I think Dr. Barolat in Denver may use this approach -- last I heard. Unfortunately, you can pretty much find literature to support all of these types of placements but no definitive study that shows which is the best. I wish I could say which is best for you.
Keep in mind Dr. Marvel is a gynecologist while Dr. Hunter and Dr. Barolat specialize in neurostimulation. That may be something you want to take into account in your decision if you decide to try neurostimulation.

Violet

Thanks, Violet, for that summary.

RC, I was thinking about a stimulator until recently (when I decided to try surgery first), and I had the same question. If I were going to do this, I'd probably do more research, but here are the handful of observations I've made about lead placement: (1) Kit's entries suggest DRG can be quite successful, (2) I'm on a pn facebook page, and several people have posted about reduced pain with a stimulator, and I think 2-3 had the drg stimulator and one had the lead placed directly on the nerve (done by Dr. Peters in Michigan), (3) I talked to Dr. Conway last week about surgery and he briefly discussed stimulators, and it sounded like he recommended the drg. So, several (albeit not systematic) observations were leading me to think that drg may be the way to go.

Also, it looks like (from their website) like the Mayo Clinic in Rochester has a group of people doing research on drg stimulators, so if my surgery doesn't work and I decide to go with the drg stimulator, I will look into having it done there. I did call them recently and learned that patients need to get a referral to one of their departments (but you can't be referred directly to their pain clinic), and then that department refers you to their pain department, so it would take a few steps to get there.

Best of luck with the procedure.

April

Thank you both for that info!
RC

I am hoping to do a trial of the drg but the dr is going to use s2and L 1. Anyone heard of this placement? She talked about avoiding cross talking if wires are too close.

I am currently doing a DRG stem trial and my lead placement is S2 and three. I also have pain in Asfoor and I'm going to see if they are willing to test that placement.

sorry I should have proofread. i'm trying to find out if a permanent placement at S4 is ever done right now my leads are at S2 and three.

Hi Violet,

I'm looking for research on the DRG neurostimulation, but I'm stumped! I can't find much beyond patients stating they've had good experiencing or they're going for the procedure. Are you able to point me in the right direction? I see you note that Dr. Kenneth Peters has published on this subject, but again, I wasn't able to find anything.

Ideally, I'd like to see who makes a good candidate for the procedure.

Sorry to trouble you with this, I'm soaking up as much as I can in a very short period of time as I'm currently being disregarded entirely. Sigh.

Thanks for all your help and dedication.

Quick question for those who had the DRG stimulator... for the 7-10 day trial are you under an anesthetic when they put that one in too? Or just for the permanent implant? Also, how long was the actual procedure for both the trial and the permanent implant? I am scheduled for my trial next week. Please and thank you.

onmynerves wrote:Hi Violet,

I'm looking for research on the DRG neurostimulation, but I'm stumped! I can't find much beyond patients stating they've had good experiencing or they're going for the procedure. Are you able to point me in the right direction? I see you note that Dr. Kenneth Peters has published on this subject, but again, I wasn't able to find anything..

I found the following abstract on DRG neurostimulation. https://www.ncbi.nlm.nih.gov/pubmed/30067887

Sorry, I didn't make it clear but the studies by Ken Peters involve stimulation with the leads directly on the pudendal nerve, not DRG neurostimulation.

Violet