Health Organization for Pudendal Education

When I had my first visit in Boston I was told that I might not get as good results as others who have not had pain for so long. Apparently long term pain causes a brain disorder called centralization. All these years my brain has been scanning pain over and over, day after day. This will be extremely hard to stop. Because of it, I may at best get 60 to 75 percent if all goes well. I will take that for sure however it would be nice to get as much as Kit got. Has anyone been told about this before? I also think the death of my husband has increased
pains best friends...anxiety and depression. My counselor just did some new gene testing to help determine the best antidepressant, pain Med, and folic acid. Will get results next week. Will post to let you all know.

They may be right Grammy but there are other PN patients who have had severe pain for years who are able to get relief so I don't think it is a hopeless situation. I don't know if you remember Ezer who used to post here but he is one person who had significant improvement after many years, and there are others.

Violet

I tend to think that Ezer didn't have true pn entrapment. I followed him and really worked hard at doing all the mental exercises. Nothing worked. I realized that I had true damage - direct injury to the nerve. His really was emotional. I think there's a difference.

I also have central sensitization. I get autonomic dysregulation. I'm not in good shape. But I'm hoping that possibly surgery works. Are there any statistics which show the percentages of people helped by surgery Violet? I lost your email. I can't recall if I had asked it before. I'm at the point now where I know I can't go on like this.

Hi Saint,

I gave you my recollection of what Hibner said in my phone call with him, but if you can get a phone consult or an appointment with him, you can also ask him directly. He can also tell you if your case is one that is at a higher or lower likelihood of success. He said I had a few factors working in my favor: the location of my presumed entrapment (between the STL and the SSL) is comparatively easy to decompress, I could point to a triggering event (5 months of intensive workouts on a step machine), and I had had this for less than 10 years. So, a conversation with him or Dr. Castellanos might also help determine their take on your specific odds of success.

April

Ezer did have pudendal nerve decompression surgery so I'm not sure we can accurately say whether he had an entrapment or something else.

According to the published literature the success rate of PNE surgery is between 67-86% if I recall correctly from the articles I've read. Success doesn't necessarily mean cure but it typically means a significant improvement in symptoms.

Violet

April wrote:Hi Saint,

I gave you my recollection of what Hibner said in my phone call with him, but if you can get a phone consult or an appointment with him, you can also ask him directly. He can also tell you if your case is one that is at a higher or lower likelihood of success. He said I had a few factors working in my favor: the location of my presumed entrapment (between the STL and the SSL) is comparatively easy to decompress, I could point to a triggering event (5 months of intensive workouts on a step machine), and I had had this for less than 10 years. So, a conversation with him or Dr. Castellanos might also help determine their take on your specific odds of success.

April

Thanks April - I didn't know they could gauge that. That helps. There is a doctor near me I'm waiting to hear back from. I hope that they can help me because this is impossible to live with.

Violet M wrote:Ezer did have pudendal nerve decompression surgery so I'm not sure we can accurately say whether he had an entrapment or something else.

According to the published literature the success rate of PNE surgery is between 67-86% if I recall correctly from the articles I've read. Success doesn't necessarily mean cure but it typically means a significant improvement in symptoms.

Violet

Those are pretty decent odds. Did many get worse? That's what I'm afraid of.

Dr. Hibner said 1% may get worse.
http://www.pudendalhope.info/sites/defa ... Hibner.pdf

Hi Everyone,
I have been off the forum for a long time, but was a member for several years.

I have severe rectal pain and very tight pelvic floor tight sphincters etc... I don't feel empty after peeing.
Having a bad flare of that now, Rectal pain worsened and over time I could not sit at all.
I had a surgery.,,, nerve resection related to 2 nerves in 2011,,It was wrong for me and moved my pain from sit bones to anal area...the worst spot as any way I sit hurts! I cannot sit.
You folks may remember me I posted a lot back around 2011 - and for several years.

I did have some improvement from a good PT but not enough to sit!... but I confess at the time I was afraid to try. sSo I knelt on cushions instead,, I did ok with that and was able to be active again, but things plateaued about mid 2018.

I am still suffering and having a bad flare lately.
In my case emotional issues, stress... or grief has certainly upped my pain.

I just came on, and noticed a post where it was mentioned Dr Hibner stated he has a 1% failure rate?
Wow is this really the case? Would love to hear more about that. BTW Dr. Hibner was Not my surgeon in my previous nerve re-section,
Thanks for any info on Dr Hiber and his statistics,,

KathyD

My name is Richard. I saw Dr. Hibner in February and asked him his failure rate for the pudendal nerve decompression procedure. He told may his failure rate is around 6%