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DiscussionPudendal Nerve Entrapment/Neuropathy/Damage
Chronic Pain | Last Active: Jun 4 12:10pm | Replies (650)Comment receiving replies
Replies to "I am curious to know if you have any further successes? I had pelvic vein embolization..."
It happened me after surgery too pudendal neuropathy
Its very tough 7 years later
Peripheral nerve surgeons (dellon institute) can be helpful when other doctor's fail. They actually work with "all" peripheral nerves. However, the surgery for pudendal problems is difficult, so most pelvic surgeons don't ever learn it.
The same thing happened to me in 1998. Pelvic surgery lead to Pudendal nerve damage. I developed a neuroma and my doctor in his infinite wisdom said the pain was in my head even though I lost 30 lbs and could barely stand or sit. I had a young family to look after back then too. It was brutal. I decided to leave this amateur and seek help with doctor's at an Ivy League hospital. They did pain mapping laproscopiclly and did a series of lidocaine injections. There was 40-50%
improvement and in some areas,the pain never returned! I was still in too much pain so the pain center docs tried me on seizure meds ( which made me feel spaced out everyday. )After trying other things they finally said, no more fooling around and I was put on a duragesic pain patch. That was when I got my life back! I tolerated the meds well for years! I recently moved south where the doctors are paranoid about meds. So even though I was doing well for 20 years, they've reduced my meds causing me pain symptoms again because of the hype. It doesn't matter that I've been a good and successful patient for so many years. So I reluctantly agreed to a nerve block which didn't work. I've found out one important thing in my research. Go to a doctor who's an Anesthesiologist. The MDs and DOs who are NOT anesthesiologists have less understanding and training of the nervous system and do not spend only 6 months or so learning to do injections (which in my experience has been hit or miss.) My pain doc up north who was also a trained Anesthesiologist was definitely a better pain management doc....(I miss him). Many pain patients are suffering because they're under prescribed when there's actually a small percentage that abuse their scripts or end up in trouble. Its too bad that the ignorance out there is general, because most of us want to be pain free and live life. We're not interested in getting high or abuse our meds. I recently heard that there are MRIs offered to scan nerves to pinpoint those that are damaged. If you opt for some Physical Therapy, find a pelvic floor DPT who understands nerve issues with a lot of experience. It's a battle trying to find the true expert providers out there but don't give up, advocate, research,and question everything!!! Knowledge is power ( as long as its found in the right place ( like Mayo) Hope this helps.
We currently are looking into and having treatments called MFR or MyoFacialRelease. This is the area between the outer skin and muscles or between two muscles. Normal action of this area is to allow one part of the body to slide over the other like one muscle over the other muscle. The theory is that if one is inactive for a long period of time (like my wife was with the shingles episode and bed ridden for about 3 months) this layer can become hardened and not work as it normally would. It can also entrap nerves that pass through this area which can cause pain. Treatment for MFR is specialized massaging techniques that help restore this area to it's original fluid from a harden state. We have also tried some new dual beam laser treatments that offer temporary relief but nothing permanent.