Health Organization for Pudendal Education

I have been so traumatized by my pudendal nerve injury that I'm afraid of getting worse. I don't know where others are on the spectrum of this but I'm on the far far worse end. I get sick to my stomach just reading some of the posts and have to leave as I'm in pain already and reading things sickens me. A doctor told me nausea is a reaction to severe pain. I wondered if we can list the success/ failure rates of each doctor on here? I was considering Hibner but read a few bad things and I'm so bad already that I can't have one more thing go wrong.

Is there some way we can list this for the benefit of all?

Hi saint,

Hibner gave me his best estimates for his success and failure rate. I had to sign the form showing that I read it and understood it. I think it's on an earlier post of mine.... I think the form said: 1/3 have a full or almost full recovery, 1/3 have improvements, 1/3 don't change, and 1% get worse. When we met, though, he said that 1% figure had just moved up a bit to 2% or something. I don't think he told me which of the three categories got smaller with the small increase in the getting worse category. I was recording him so I do have it recorded. I think his techniques (e.g., how he cuts the STL) may make him the best option. I explain all of that in a post after my surgery. I think the subject line is "recent surgery."

April

What does it mean "how he cuts the STI"? I'm sorry I forgot - you had surgery with Hibner?

I thought we could list which doctor had the best success rate. I've had bad doctors before and the best we can do is rate them to protect others from the same fate. But pudendal injury is so severe I thought we could list what doctors had the best success in relieving pain.

Hi Saint,

I don't think there we have public data on that. The individual surgeons may collect data, as Hibner did, but I don't think it's public. Maybe someone who had surgery with Conway had to sign a similar form to the one I signed and knows his stats. But when I chatted with him (18 months ago), the stats he gave me were general stats (not specific to his surgeries), so he probably doesn't have his own stats.

Hibner cuts the ST ligament in a way that increases visualization of the pudendal nerve, and he cuts it in a way (z-cut) that promotes healing when it's stitched together. Here is a paragraph from that thread that I mentioned that lists techniques that he uses that I think improve the odds of success. I think other surgeons do some of these (e.g., detaching the SS ligament from the ischial spine), but it's not clear that they do all of them:

"(2) I am very glad that I did the surgery with Hibner. He seems to be refining the surgery in ways that improve the odds of success: (1) cutting (rather than splitting) the ST ligament for greater visualization, (2) using a z-cut on the ST ligament to elongate it and strengthen the stitching, (3) detaching the SS ligament from the ischial spine to create more space for the nerve (the SSL is so small that it just retracts to the sacrum after being detached), (4) wrapping the nerve in an amniotic membrane to promote healing, (5) putting a wound vac on the incision to promote healing and reduce the odds of infection, and (6) implanting a bupivacaine pump to numb the pudendal nerve and buttock for 5-10 days after surgery. It’s not clear to me (from a bit of comparison shopping) that the other surgeons are using these techniques (at least not all of them), and I think they all make a lot of sense."

April

None of the above helped me with surgery from Dr Hibner nor with Dr Ansell. Both were failures.

Unfortunately, the only statistics are from the doctors themselves. Just because they may have published them in journals, does not make them accurate. The only way to have real numbers is through a independent review of every doctor who does these surgeries, which due to cost and indifference, will never happen.

My surgery was a failure, which also made me markedly worse. I asked all the right questions before surgery, including, did anyone aver get worse? Answer - no.

In my opinion, the surgery works for those with an entrapment in the areas that can be accessed in the procedure. I believe that some of us have entrapment, but many do not. One person’s success or failure with surgery does not predict someone else’s. I also don’t think the PN medical community has done a good enough job educating people with PN on all the possible causes of pain. In addition, some of us have multiple factors contributing to pain. I am so happy you are doing well, April, and so sorry you are in so much pain, Saint.

Stephanies