I’ve found relief and want to share how I got here

[Sk8rcruz]

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.

[Patty]

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.

[Violet M]

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

Violet

[Lelej]

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

[Violet M]

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

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

[Dipper1]

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

[Sk8rcruz]

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.

[stephanies]

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

[Still fullofhope]

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!

[Sk8rcruz]

I’ll offer some answers and an update here: I have had one battery replacement and several L1 lead replacements since my initial DRG implant installation in 2018. The S2 lead has needed no maintenance-the battery replacement was planned maintenance. I will preface this update with my opinion that when my DRG battery and leads are all working correctly I experience a quality of life that is so valuable that I’d have surgery every year if need be. Here are the issues I have had with the L1 lead,what Dr Heros and I have tried to remediate them, and what is next for me. Over the years I’ve had 3 L1 lead replacements. The first 2 were due to partial breaks in the lead where it “loops” to reach the target. Most recently the lead migrated to the L1 pedicle. Abbott has yet to develop a stronger conduit-the lead itself is thin and fragile within its “sleeve.” Each time the lead has failed gradually until I noticed changes in the (secondary issue of) pelvic muscle dysfunction that accompanies PN, then increased nerve flare-ups, then ultimately an error message on my controller that the lead cannot deliver the amps it is set to. Then an Abbott rep verifies the problem with their reprogram tool. Dr Heros has made bigger loops to reduce stress on the lead to no avail. Each re-attachment added more risk of migration and that’s exactly what happened with my last replacement earlier this year. My insurance approved a trial of a second implant- SCS style-Evoke Saluda, I think. It was a single string with 12 electrodes that was placed in the epidural space from about T9-T13. I trialed it for 10 days, simultaneously halving my regular low dose of pain medication. I trialed 4 programs and then another 3 after a “smart” reprogram where with the assistance of a tech, the device learns from my direct input. I also trialed turning off my DRG (S2 only) and and lasted 4 hours before turning it back on amidst a pain spike. I trialed turning the SCS off when sleeping to stop the buzzing in my legs from keeping me awake. I estimated about 20% pain relief- about the same I would get from taking one 5mg oxycodone 3 x a day. Not much. So it was removed, my input was noted, and Dr Heros proceeded to investigate how to make the DRG work better for me. My insurance just authorized two more leads plus special surgery to anchor them- one lead to replace L1 and another as a backup should L1 fail (location unknown by me at the moment). I will have the surgery early May 2025, and will post again. Note: even with the DRG and all my other consistent interventions I can not sit without pain-I have managed to drive using a twin cheeks cushion with ice in the middle and can even fly this way for an hour or two. It’s the pain relief that I’m after and the DRG delivers.