Pudendal Nerve Entrapment/Neuropathy/Damage
Hello from a new member. Am wondering if anyone suffers from the monster Pudendal Nerve Entrapment/Neuropathy/Damage? I do. And I’m very alone in it. It is a very uncommon condition, and because of its personal nature, one that many people may not be comfortable opening up about. There seems to be a more vocal/visible presence of patients in the US, AUS and France. I hope, I need, I want – for it be made more aware of here in Canada. If there is any one who suffers from it, or who thinks they might, please feel free to open up about it. Please join me in advocating for ourselves in this horrible condition.
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Everything you have done, I have done. Nothing works. CBD 200mg does nothing for my pain. THC 10-15 mg is a distraction so I use that. Research Abbot laboratories re stimulator. Call them up, talk to them. I'm having another try at it with 3 leads placed instead of one, hoping that come of them stay in place. I have had surgery to move the nerve so it wouldn't hurt, but it didn't work at all and cost me $25,000, uncovered. DO NOT GO TO DR LEE DELLON IN BALTIMORE. HE IS A TOTAL FRAUD AND PRAYS ON DESPERATE PEOPLE.
That's how I feel with my daily persistent headache every day/all day. Today is awful. But we have to have hope. There are people who love us and need us. My brother committed suicide not long ago and it hurt so many people. You are here on loan from God and he has us like this for a reason.
I had 2 MRNs at Stanford. While they confirmed damage to the nerve they were not able to pinpoint the location so not that useful.
I also had a failed DRG trial, one of the leads came out right away. However my doctor felt even with the one lead in I should have gotten some relief so now I need to try a peripheral nerve stimulator.
Has anyone tried or heard of using Sprint PNS for pudendal nerve pain?
@jks1964 Hi – have you ever tried acupuncture for your headaches? So sorry to hear about your brother. Yes, I also believe we are on this earth for a reason, and only God knows why. Peace to you
Acupuncture useless.
I am so, so sorry about your brother. May God grant you the PEACE that surpasses all human understanding. I hope the headaches go away on their own.💕💕🙏🙏🙏🙏💕💕💕
Thank you. Happy Easter!
I’m not 100% sure , but I think the sprint device is a short term thing , or at least it was when it first came out.
The Sprint goes in for 60 days and then the claim is the nerve signal to the brain is reprogrammed so the relief continues after it is removed. However there research is for more common issues like back pain and not for pudendal nerve pain.
I hope you’ve gotten help by now.
Do not go to Mayo Clinic if you have perineal pain. Do two things:
1. Call Michael Hibner in Phoenix and get a tele-appointment. If you really have pudendal neuralgia, a tele-appointment might be the best $500 you ever spend.
2. Go to the support group pudendalhope.org to discuss things (including Dr Hibner) with other victims of this cruel disease.
And the other poster is correct about Lee Dellon (although mercifully, he is now retired).