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Pudendal Nerve Entrapment/Neuropathy/Damage
Chronic Pain | Last Active: Feb 13 8:28pm | Replies (547)Comment receiving replies
I fell in stairs that were not carpeted injuring my pudendal nerve Thanksgiving 2018. I have burning pain, like a hot poker up my buty 24/7. I sit on ice all day, can't go anywhere, basically housebound. I've been to 17 drs from New Hampshire to Boston to Manhattan to Baltimore where I has surgery that was supposed to move the entrapped nerve and fix it. It did zero and cost me $25,000, NOT COVERED. I have had 4 different kind of blocks, none of which worked. I had DRG stimulation that disconnected fron the nerve before I even got in recovery room. I have been to every kind of doctor who works in this area with zero results. I'm now going to try DRG stim again but he will place 3 leads and he is hoping one or 2 will stay connected. If this does not work, I will kill myself. No other e way out.
Replies to "I fell in stairs that were not carpeted injuring my pudendal nerve Thanksgiving 2018. I have..."
Hi @clashganny, I can hear the desparation in your message. Living with constant burning pain must be near unbearable and you're at the end of your rope. I hope you have seen the multiple responses from several members to your first post. We're hear to offer support.
Click this link to see your first message and the replies from other members to you. https://connect.mayoclinic.org/comment/696005/
When will you have the DRG reconnected?
hello, Your post is from April so I am wondering if you had the DRG stimulator placed and what your results have been. I am scheduled to be having this done as I have had pudendal nerve pain since 2015. Mine started out like you describe and that really horrible pain lasted about 2 years. Subsided some, and came back worse in 2018. Now I have pain, but it is not intolerable like that was. I too saw about 15-20 doctors and had 2 perineal scar tissue revisions thinking it may have something to do with all of the vaginal scar tissue I had post babies (25 plus years ago). It really didn't make sense but I was willing to try anything. I'm so sorry about the failed surgery you had. I also considered that surgery and was going to go to New Jersey where it was offered. Instead, I have been staying here and continuing to try almost anything to get relief. The Nura Pain Clinic in Minneapolis is offering the DRG. Did you find it worth it?
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I had this for 14 years and sat on a donut and cried a lot. Please try anti-seizure medicine. It worked in 2 weeks. My PT at the time told me she had heard it works. I believe it was Topamx. Ask!
Mikayla