Surgery

[desperate]

Hey Guys,

I have been on this forum for a year now ( with this condition for also 1 year and a month). Not much has changed in a year of intense pelvic physio, prolotherapy, massage, myofascial cupping, Accupuncture, ART, Trigenics, stretching, shockwave, and countless foam rolling.

When does someone draw the line and say 'alright let's try surgery'? I know this is a subjective decision and everyone determines the right to surgery differently (such as pain level etc) but when is it safe to assume no amount of physical therapy will help at all? Is it safe to assume that I won't get better from any natural treatment at my one year mark? Because believe me, I've spent probably 40k on treatments within one year. And if I look back and see my progression after one year I can actually say I've regressed not progressed.

My pain isn't severe (as I'm not taking medication... or at least try not to) and try the avoidance of sitting and things that aggregate me style. But shit, when can I say this isn't going to work.

I need to know the success rates of surgery (if any). I know there is A LOT of controversy about surgery on this forum so I know it's subjective. People will comment saying there are hundreds that got way worse and a hand full that got "better".

I don't want the bs. I want truth. I want this post to speak real numbers. Something that we can quantify. This forum is not helping us determine anything for ourselves rather than stress us all Out. We need to all be proactive and maybe use this forum to gather information for qualitative measures.

For instance, I'd love to know how many people with this condition have a foot mechanical problem. Or how many people broke their collar bones ( to see if there is a relation). Or how many individuals suffered from digestion problems prior to their trigger etc. We need to make sense of all this information And qualify it.

Anyways this post I am just wondering the surgery success and want to know truthfully the probability of a successful surgery. I'm a probability guy, I need numbers for my decision. I'm not going to jump to surgery if I know I have less than 10 percent of a good result and over 50 percent of getting worse. Can everyone please post numbers and real cases of surgery successes.

Thank you
-D

[Patty]

Have you consulted with a surgeon yet? Maybe that would be a good place to get more concrete numbers? I limped a terrible heel spur for 18 months then 2 years later developed chronic pelvic pain. All the docs tell me there is no relation but I fail to believe. Have you been to a DO?

[Ray P.]

I am laid up with pain in feet as much as the PNE.
It came after PNE.

[ezer]

There is no absolute. Even the definition of a successful surgery is fuzzy.
Some PN surgeons will take any improvement even if not directly related to the pudendal nerve as success.
Some patients report improvements 3-4 years after surgery. There is no way to correlate improvement after that long. It could be some completely unrelated factor like a change in lifestyle.
Some patients report an improvement but are still on the same pain medication. Pain is subjective.

[Alan1646]

According to Stephanie Prendergast "There is no way to determine whether or not someone has pudendal nerve entrapment prior to surgery."
http://www.pelvicpainrehab.com/pelvic-p ... pn-or-pne/

If she is right, I wonder what happens when a surgeon operates only to find that there is no entrapment of the nerve. Does the surgeon sew the patient up without doing anything else? And what does the surgeon tell the patient afterwards? "Sorry to tell you this, but I opened you up but found nothing wrong, so I just sewed you up again. You still have to pay the thousands of pounds for the surgery though."

[ezer]

Yes alan. All those surgery reports say pretty much the same: Dense adhesion bla bla bla... I am yet to hear from a patient that was told they were not entrapped.

Funny about Stephanie. 11 years ago, she did not believe in PNE.

Also it is interesting to read what her PN patients have reported to her in the same article:

I’ve had many patients that have reported these symptoms.

• an increase in heart rate,
• a decrease in the mobility of the large intestines,
• a constriction of blood vessels,
• pupil dilation,
• perspiration,
• a rise in blood pressure
• goosebumps, and
• sweating, agitation, and anxiety.

She is writing ad verbatim what scientists describe as the fight/flight mode originating from the amygdala, the center of our emotions.
The body is ready to fight or run away. The increase in heart rate is to pump blood to our muscles. The constriction of blood vessels is to limit the bleeding during an injury.
Fortunately in modern life we rarely have an immediate predator attacking us. We experience however a never ending diffuse threat that we perceive at all time. Chronic pain patients have a brain that reacts the same as if they were experiencing an immediate danger which has been shown on fMRI scans.

[Violet M]

Dom, you probably know what the published literature says on success rates of surgery (about 70% successful, meaning at least a 50% improvement in symptoms). And if you've been following Ezer's posts you probably know that the success rates seen on this particular forum do not bear out what is published in the literature. So, I really don't think anyone can answer your question on true success rates with 100% accuracy. I don't think anyone knows for sure and if someone tells you they do, I would be suspicious. Unfortunately, there is no way, on a forum like this, to do an accurate study.

My thoughts on surgery is that it is something to keep in the back of your head as a last resort because it's not a guarantee and you could possibly get worse. I think that surgery is an option for people who feel they have no quality of life, to the point of being willing to risk getting worse, who have tried conservative therapies without success and have few options left, and whose diagnosis points strongly towards a possible entrapment. If you aren't to that point, surgery would not be right for you.

BTW, I have seen posts where people reported they had PNE surgery and the physician told them there was no entrapment found. I don't think we need to be paranoid about doctors just doing surgery to fleece people for money because I don't think most of them are out to get people. I've spoken personally to Prof. Robert, who pioneered the surgical approach, and he has sincere compassion for people with PN. No one forces you to go to a surgeon but if you do go to one, keep in mind that surgery is what they have been trained to do and they are going to see the solution to your problem from that perspective.

Another thing to consider is, what are the success rates (published or discussed on forums) of other possible therapies? Sadly, not perfect either, really. But most people do eventually reach an improved quality of life after trying a number of different things until they find what works.

I wish you all the best as you make your decision.

Take care,

Violet

[nyt]

I spoke personally to a patient who had pudendal surgery and the physician told her she was not entrapped. Please be careful about blanket statements that all patients are told they are entrapped because that is a false statement.

[ezer]

nyt, 1 out of how many? Statistics matter.

I corresponded with 22 people that had surgery in a 10 year span. We were all found to be entrapped. As you know only 3 out of 22 benefited from the surgery. The language used in the surgery reports by the same doctors was always eerily similar (progression through dense adhesion, nerve flattened etc.).

I am sure that because of our sedentary lives the pudendal nerve does not glide freely. But does it equate entrapment or pain?

I had a bad accident to my finger 2 years ago (I chopped it). It is a stiff block of scar tissue and I cannot bend it. The nerve regrew inside and it is clearly entrapped. I mostly feel numbness, not pain.

[Alan1646]

This is all very puzzling. It seems that some patients have been told that they have entrapment before surgery http://www.pudendalhope.info/forum/view ... =44&t=5931, and yet there is the opinion from Stephanie Prendergast that it isn't possible to tell whether someone is entrapped until after surgery , or at least at the time that surgery is performed. Violet, if there are forum posts by patients who were told by surgeons, after the surgeons carried out surgery, that they were not entrapped, can you please give the links?
I had a similar experience to Ezer with a severed nerve under my chin after a road accident some years ago. I experienced numbness for a long time but no pain as the nerve slowly grew back.