Update: DRG in since December 28th, 2019 - two month check in
I did the permanent implant (although my Dr said it is reversible) right after Christmas. They put the leads at L1 and S1. I had a hard time pulling the trigger because the idea of an "implant" unsettled me and my trial did not eradicate all pain. I felt like it cut it 40-50%, so needed to decide in a week and before the New Year to save on the deductible to go or not. FInal deciding factors:
1. Is reversible
2. Seemed like 40-50% pain relief and that was enough to add a great deal of value to my life once I got over the sadness of not a miracle cure
3. Dr told me that we will see in 2-3 months and that a longer time period is a better gauge for my pain as it is "Therapy" (I had to take his word on that
)
As an update, a few weeks after surgery I was not so sure it was worth it. Surgical pain still, combined with the perineum pain. However, over time I have seen results. Since I have learned to work and function through the pain, I am use to it always being there. But now over two months I notice myself being more active, in better mood, better cognition. What has happened is that over time the pain has slowly improved. Day to day, hard to measure but over 2 months I can see the trend line. I have quit cymbalta and all pain meds now!
I have went in the office and they have adjusted the settings and that helps helps. I now have two programs to choose from and we are still dialing in the best calibration. The Dr. Said give it time as it should improve with time - they said wait two months and see. I am off all pain meds now and still feel some pain every day, but instead of spike at 8 it spikes at 3 or 4 with fewer spikes. That alone enables more exercise, diet, etc. for me which also helps.
I cannot feel the stimulation except sometimes if I move in a funny way. They tell me that you should not feel it. Now you can adjust it with an Ipod, so there are times I do turn it up a bit so I can feel it on purpose to make sure it is doing something.
Also, because the pain is not as bad I am slipping into bad habits like no stretching,no exercise, late hours at the office, sitting for 12 hours straight, bad cushions. That brings the pain back, but the spike levels are lower. I think my issue was brought on by combination of unlucky draw on pelvic anatomy, long hours sitting in office and car and high stress that created a nerve fire that took years to wind up and will take years to unwind.
So, I will need to make sure I continue to manage it holistically. So for me, the DRG stimulator has cut my pain about 50-60% at this point. I would have said 30-40% right after surgery, so time has helped and praying it continues. This type of ongoing pain can make you feel hopeless at times but I decided after much prayer and soul searching I have a family that needs me, a Lord that loves me and that I was going to fight this as best I can. Boards like this in our modern world our an incredible tool for hope and support, especially for rarer issues like this.
Here are the things I have found work for me to attack this pain:
1. DRG Neuromodulation implant
2. Daily pelvic and perineum stretches taught to me by a physical therapist (They showed me dozens but I found the 1 or 2 I can do that work best and can be done anywhere - often for me in the morning shower)
3. "Cushion or Assets" FIRM cushion for office and car (long sit hours) to relieve pressure from perineum
4. Get up and walk at work every 45 minutes (when I can, often can't do this as tuck in meeting but need to more). Physical therapist recommended
5. Varidesk adjustable desk in office so can sit and stand at intervals
6. Standing chair that allows me to stand but sit back and to relieve pressure off the perineum
7. Less stressful job- working on this one
I hope this helps anyone considering this. I ultimately did a lot of research to find the best Dr in my area for this and landed on Dr. Ioannis Skaribas,a pain specialist, and very experienced in DRG implants.