Health Organization for Pudendal Education

I’ve kept a continuous chronological list of every doctor I’ve seen, treatments, medications and changes, -procedures, imaging, etc. regarding my PN. On a separate document I’ve listed every doctor/provider’s name and a link to their profile or website. I have my medical files downloaded to DropBox and physical CDs of my MRIs. I didn’t start out doing this but found is necessary in order to advocate for my health. It took hours to initially create these documents. It has all paid off now that I’ve found a solution that will give me my life back. My hero is Dr. Heros in Portland, OR USA. He reviewed my stack of medical records and my chronological journey. I sent them to him prior to our first visit. When he came in to see me I was laying sideways on the floor, propped on an elbow (with a skating protector on it). He was truly moved by my condition and wanted to help. I was his first PN patient. That did not hinder him. He reached out to his peers and spent time educating himself and everyone in his surgery center about PN. I completed a DRG trial that reduced the nerve pain, in my estimation, by 70%. By the 3rd day of the trial, my pelvic muscles stopped spasming as well. I was able to drive again. Yesterday morning I had a procedure to permanently implant the DRG leads and wireless battery. This morning I’m stiff and sore but even on this first day post-op, my lady bits are not pinching, stabbing, or burning. Dr Heros put a lot of effort into getting the optimal lead placement for my issue. He has skill and compassion, and now I would consider him a PN expert in his field. If anyone is considering a DRG, I highly recommend a consultation with Dr Heros. If you come from out of town message me. I’m in Eugene and possibly could help with lodging and transportation. I know what you’re going through! I’ve suggested to Dr Heros that he should contact Pudendal Hope administers in order to be included on the list of providers. This is his website profile https://www.spinaldx.com/our-doctors/ Sincerely, Lisa.

Lisa thank you for posting. It seems the DRG is working well for a few people on this forum. Nice to read something works. This was offered to me by my
pain doc but for now I'm holding off. Trying not to proceed with anything invasive. I hope you have continued low pain days.

Thanks for the info, Lisa. Glad to hear that the drg neurostimulator is helping you.

Violet

Thank you! I am so glade you are much better. From experience, it is very rare to find a dr who will view all your documents because we have tons! And to find a doctor who will be moved by your case is even rarer.
Thank you for sharing your experience the drg seems to be working for a lot of people. It give us hope that if all treatments failed there is still hope with drg
Lelej

Dr. Heros has been added to the list of providers on pudendalhope.

http://www.pudendalhope.info/node/58#OR

Hi Lisa... May I ask you where the leads were placed in your case? Ty

I’m still getting relief with my DRG. Been off oxy since Feb 8. I still get some pain with sitting and physical activity, but it’s “blunted,” not like the horrible, relentless pinching I had before. It’s manageable. My controller is an Apple iPod with an app called “Proclaim DRG.” The leads are placed in L1 and S2. The system is MRI conditional, meaning certain steps need to be taken in the event I need an MRI anywhere in my body. It will be put to the test soon since I do need a brain MRI to follow up on a separate medical issue. CT scans, even with Dye have no restrictions. I’ve been able to fly comfortably and even drive up to 4 hours a day with a twin cheeks cushion, unthinkable before DRG! I’ve learned of one other female planning to trial a DRG who has bilateral pain and she will need 4 leads if she goes through with it, although I don’t know where her leads would be placed. Lead placement is particular to each Patient’s symptoms. I wish you all well and write back anytime. I will answer.

Thank you for the update. I am happy to read you are still doing well and able to do more things. Being able to drive four hours, even with a cushion, sounds like a dream!

Stephanies

So glad you got so much relief fromDRG! One of my doctors also suggested I try DRG and place the leads at L1 and S2. I was just a bit scared when I looked at the pretty big battery he would implant in my butt. How was your recovery from the implant surgery? Would the leads stay where they are? Thanks!