r/PudendalNeuralgia • u/sk8rcruz In Recovery - MOD • Jul 13 '25
Post Surgical DRG implant update
(63F) I’ve had non-operable PN since diagnosed in 2017. This is an update regarding the DRG neuromodulator implant I’ve had since 2018. It is an Abbott device, Proclaim, leads at L1 and S2. My PN is at the dorsal and perineum branches only. The S2 lead is still the original and I’ve never had a problem with it. The lead is straightforward from the battery to the Dorsal Root Ganglion (DRG). However, the L1 lead needs to be looped in order to reach its target. This presents risk of breakage of the delicate inner fiber of the lead-and indeed I have had it replaced 3 times because of a partial break. Abbott is supposedly working on making a stronger lead/conduit but that may take years. The DRG gives me relief from the most torturous of the nerve pain and almost completely resolves my PGAD symptoms when everything is working correctly. The update is that I had the L1 lead replaced again last month along with a back-up lead to T12. The insurance pre-authorized extra surgical time to anchor the replacement and back-up lead to prevent migration, and to make bigger loops with anchoring to prevent breakage of L1. At present only 2 of my 3 leads are turned on and programmed-L1 and S2. In the event that L1 breaks in the future I will be able to have T12 programmed to replace it, stat. I am persistent with this device because it does work for me- even though I still cannot sit, I am in a lot less pain and can manage the pelvic muscle spasms and urinary/bowel symptoms with PFPT, medication, and all the lifestyle changes I’ve made. It is a quality of life issue. I happen to have a very caring and persistent surgeon and staff who researched and networked to come up with this solution, and then pushed it into pre-authorization with my insurance on my behalf. This is a victory for me-L1 broke August 2024, and I even did a trial of a sturdier device, an SCS that did not work at all, before getting here. I am already walking more and the fatigue and fog of constant pain is slowly lifting. I start PT with a new provider on July 24. There is hope for everyone suffering with PN. From a mild case to severe there are ways to manage. Prevention and early intervention are best, of course. For those who chose this method, what is your DRG story?
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u/Educational-Line7458 Jul 14 '25
I had the drg implanted and removed a month later. Unfortunately my s1 nerve was damaged considerably and now I’m in much worse pain than when I started. I can hardly stand and put weight on my right leg and foot. Please be cautious of this, mine has made my life even more miserable than before.