Health Organization for Pudendal Education

I am a 26 year old male with pudendal neuralgia and experience severe problems with rectal, penile, and perineal pain/function. I had a DRG (dorsal root ganglion) trial stimulator implanted Wednesday Oct. 18th for help with my pudendal neuralgia, which I have had since May 2012. The doctor put the leads on S2 and S3 but not S4 (the three nerve roots the pudendal nerve branches off of). He can only use 2 leads on each side, and my pain is bilateral.

Has anyone ever had a DRG stimulator implanted for pudendal neuralgia? If so, where were the leads placed? I really am looking for help with rectal and penile pain and function. I appreciate any replies, as I will have to make a decision soon on whether or not to have a permanent put in and really wondered at which levels of the spine (S2, S3, and/or S4) people with pudendal neuralgia have had the most success with lead placement.

Are you getting any help from the trial, Drew? Sorry, I don't have any experience with this treatment so I can't say for sure but my guess would be that each patient is different and it is a matter of trying which lead placement works best for you. Are they able to change the lead placement if this current placement doesn't help?

Violet

I just ended a 5 day trial of drg stimulation for my right side pain (sit bone, tip of penis, anus), and it was a complete success. They placed the leads on s2 and s3. Again, I only had pain on one side.

I hope you have success with your drg. I assume you have tested various settings. I had to change one of mine several times before I got the right level.

See my full info in the case updates section.

Drew, one reason why you may want to proceed with the DRG permanentdevice is that the device you get will be newer and hopefully better than the one used in your trial. If your trial was like mine, they used an older model of the control box. The permanent one will either be the Aclaim model or their new Proclaim model. And one would hope that the new device might be better.also, your company rep can try different settings. In addition to up and down settings changes, they have several other option for how they manage the signals.talk to your company rep about those options.

One more reason to get the permanent device is that it is upgradeable. The device under the patients skin can have software uploaded via Bluetooth communications. So in case the device does not fix all your problems, maybe it will in the future.

Good luck. Hope this is your answer.

I had the St.Jude Axium DRG trial in August for perineal/ rectal spasms and pain with sitting. Leads were at L1 and S2. First three days went well. On third day Rectal pain intensified. Some pain was relieved by 90%, but not the rectal spasm. They offered to implant the lead lower at S3, but my pelvic pain sp. recommended not going ahead unless I had another trial with lead at S3. She suggested trialing the Interstim at levels S3 and S4. If that does not work I will probably have another DRG trial at S3 later in 2018. Did you get relief from trial lead placement? Did your Dr offer permanent placement at S4?
DRG is so new there is not enough anecdotal info for PN.

Kit how is the permanent DRG working out for you?

My trial was only for 5 days. Then they had to remove the temporary drg stimulator. I will get the permanentdevice on Dec 28.

Too bad you couldn't get it before the holidays, Kit.

I had the permant DRG neurostimulator installed on Dec 28, 2017. As with the trial, it was a complete success. I can sit about any amount of time with no pain during sitting or after. It is a miracle to me. I got my life back. The leads were again placed at s2and s3. There is tenderness at the place where they placed the controller under my skin. That part does not hurt, but if I touch that part of my back on anything it is very tender. I am sure that tenderness will go away in a week or so.

Goog luck to all pudendal pain people. I think you should all try the DRG neurostimulator. Why Not? In 5 days you will know if it helps. My trial could have been 5 minutes.

Wonderful news, Kit!! Thanks for the update!

April