Surgery

[desperate]

Wow I just wrote like 5 pages of a response and my Internet froze and kicked me off. I am not writing all that again. Wow. Something really didn't want me to type all that. Maybe it was meant to be not to post that.

 

Basically I said surgery is not the answer for 90 percent of individuals out there. I see this condition strictly as a fascia problem. Fascia in the abdominal cavity and pelvic cavity are compressed. Some people are compressed by the fascia of the obturator internus, some by the fascia between the sacrospinous and sacrotuberous ligaments, some by the fascia of the coccyx, some by the illiacus and psoas....and the list goes on. The problem with this condition is there is no way for surgery to be a success bc it is not so black and white. The fascia of the pelvis is probably the most interesting fascial structures because of its complexity in nature. Let's take a look at the obturator muscle and it's fascia. The pelvic fascia is strongly developed and contains a white dense curved thickening (kind of like a bowl). This arch runs downward from the sympahsis to the ischial spine. The pelvic fascia passes over the levator ani muscle (hence why majority of people have spasms of this muscle). As you can see this condition is very complex to treat because once one area of connective tissue becomes tightened and restricted it can tighten the whole fascial chain. Thereby creating further problems like pelvic instability, SI problems and the list goes on.  

 

If you studied fascia and it's mechanics in the body you would know fascia is one systemic chain. Take a look at the vertical fascia chain for example. One fascia chain connects from the plantar aponeurosis, up the gastrocnemius, up the hamstrings, through the sacral fascia, up the sacrotuberous fascia, up the iliocostalis and all the way to the cranial fascia. It is one connected fascia system. This is why some people with plantar fascia pain have this pain because of tight calves or hamstrings. Or even a tight back can cause it. It's strange how the body functions but we do know it is one fascial chain.

 

I guess it makes sense why a lot of people with this condition have foot pain. Because if the fascia in the pelvis is constricted and tight this will also cause tightness in the plantar aponeurosis region (as we know from the vertical fascia network).

 

I am nowhere near solving this condition but what I do know is that you have to study your body and know your body alignment issues. I've recently started to put the pieces together and who knows if I'll be eating these words in the future. But for what I know now is surgery isn't successful for majority of cases. And here's why - cutting ligaments and trimming fascia actually creates more instability in the body. Let's take for example someone like me. I have major constrictions by my psoas, obliques, illicus, pectineus and inguinal ligament. im assuming through time and years of improper loading I developed some adhesions on my left side by my hip flexor and obliques. In time this shortened movement created a pelvic alignment issue and twerked my pelvis inward on the left. Creating thickened ligaments on the left side. Here's the great part ...no shit pudendal happened. I created a body full of problematic areas. The reason why surgery wouldn't fix this is because it's not addressing the problem. Let's say I go into surgery to cut my sacrospinous ligaments and create room for the PN. Now look what I juat did...I cut these ligaments and I still have pelvic instability. Through years of healing after the surgery your body actually lays down more collagen to stabilize your pelvis. This is where the effects of loading come into play. Anytime your body does not have optimal balance and there is an increase of loading in one area over another there will be adhesions and a buildup of tissue to counter that instability. This is why surgery is only successful in a select few.

 

In MYYYY opinion (just an opinion) surgery will work for those very few that are truly entrapped by the classical "clamp". Otherwise if not then the surgery will always create more problems.

We need to address the causes and that unfortunately takes months or years to fix. But honestly this condition is way too complex to be taking surgery lightly bc there are far greater individuals entrapped or compressed in many areas than what surgeons do it on. Surgeons do not understand fascia and it's role in the body. They rarely (if ever) studied fascias movement and functionality. They know the anatomy and are helllll smart but they do not understand how cutting one tissue will effect the greater picture.

 

I'm not saying surgery does not work. It does, in a select few. But this condition is far more complex than people realize. Be Your Own doctor. I don't know how cliche that sounds but it's damn true. Know your body. Pay attention to the stretches that flare you up. Sometimes i find that stretching one muscle and it's fascia for two days is better than stretching the whole body. Just so you know which area is the problem. For example if a stretch flares you pay attention to it. Don't ignore it bc chances are it's flaring you because that's the problem.

 

Jeez I can't believe I wrote a novel once again. Anyways I can write about this topic for hours but my fingers hurt from texting on my phone. If you only remember one thing from all this just remember this one thing .....FASCIA .....address it and stretch it!

[Violet M]

Pretty much agree with you there, Dom.

@ Violet

QUOTE: "It was on the old tipna forum which is no longer accessible."

The old TIPNA forum can be accessed by going the "Wayback Machine" at archive.org/web/web.php

Thanks. I tried going there but wasn't able to access the old tipna forum. Maybe I did something wrong?

Ezer, I found this as an example of how surgical outcomes can be defined.
"Q: When is the surgery considered a failure?

Dr. Hibner:

From a research perspective what is considered a positive outcome, and I’m not saying this is good for the patient, but just for research purposes an improvement of pain of 20 percent is a positive outcome. Looking at our patients, 70 percent of our patients have an at least 20 percent positive outcome."

I think we can all agree that pudendal neuralgia is a difficult illness to treat. Can anyone name a treatment for PN that has great successful outcomes a majority of the time? I haven't heard of one.

So Hibner says 70% of patients have at least a 20 percent positive outcome. We have no idea how many of his patients have a better than 20% outcome so I'm not sure what conclusion to draw from that statement. Does that mean we should cross surgery off the list of options?

Do you believe Dr. Dellon and his 100% success rate? Why not? He has many "peer reviewed" publications.
Do you believe Dr. Filler and his 85% success rate? Again, he has prestigious peer reviewed papers.
Do you believe Dr. Jerome Weiss and his 83% success rate with his conservative treatment?
Do you believe S. Prendergast and her 90% success rate?

You can make fun of my small sample size of 22 people but the numbers those surgeons report don't gibe Violet.

It is bad science. The fact that PNE studies are published does not mean PNE is proven.

Ezer, do you think surgery should ever be considered as an option?

You can make fun of PNE surgery and PNE surgeons all you want but I know too many people who have had significant improvement from surgery, including myself. I'm just not ready to say there is never a valid reason for PNE surgery.

I don't recall seeing any of those physicians you mentioned publish those numbers in peer-reviewed literature for PNE surgery. They may have published other peer-reviewed papers but not those numbers on PNE surgery. So, I don't know where they are getting those numbers from and those are not the surgeons I chose to go to because I had not heard good reviews of them on the forum. I have never recommended anyone go to them so I guess that answers your question on whether I believe those numbers.

I'm not making fun of your numbers or your mindbody approach even though you are the only person I know who is cured from it. I think it is a legitimate method to try because I think that any treatment that gives you a chance to get your life back from PN is a legitimate option. I would just like to know if you think it is ever legitimate to try surgery, Ezer.

Violet

[ezer]

Violet M wrote
I don't recall seeing any of those physicians you mentioned publish those numbers in peer-reviewed literature for PNE surgery.

Violet, Dr. Aaron Filler has published his PNE results in the prestigious Journal Of Neurosurgery. And yes, the paper was peer reviewed. His paper shows a 87% success rate.

http://www.ncbi.nlm.nih.gov/pubmed/19323602

Diagnosis and treatment of pudendal nerve entrapment syndrome subtypes: imaging, injections, and minimal access surgery.
2009 Feb;26(2):E9. doi: 10.3171/FOC.2009.26.2.E9.
The application of new, targeted minimal access surgical techniques led to sustained good to excellent outcomes (50-100% improvement in the pain score or functional score) in 87% of patients. Most of these patients obtained most of their improvement within 4 weeks of surgery, although some continued to experience progressive improvements up to 12 months after surgery.

Dr. A Lee Dellon has published his PNE results in the Journal Of Reconstructive Microsurgery. The paper was peer reviewed. His paper shows a 100% success rate.

http://www.ncbi.nlm.nih.gov/pubmed/25629207

Pelvic Pain of Pudendal Nerve Origin: Surgical Outcomes and Learning Curve Lessons.
PMID: 25629207 [PubMed - as supplied by publisher]
86% of the patients in final year achieving an excellent result and 14% achieving a good result. Conclusion There is hope for surgical relief from pudendal nerve problems by distinguishing neuroma from compression in the diagnosis, and then choosing a site-specific surgical approach related to which pudendal nerve branches are involved.

Violet, why do you think "peer reviewed" is such a seal of truthfulness and quality? I worked for CERN (European Organization for Nuclear Research) in the past and I can tell you first hand how that works: You review my paper now and in the future, I'll review yours (=I pat your back and you pat mine).

I know too many people who have had significant improvement from surgery,

They for sure don't post on the pudendalhope success stories section then. Why?

[desperate]

ezer and violet you guys have been going back and forth on these surgery opinions for quite some time.

I guess here's the bottom line - surgery works for a select few (let's day 10 percent). It can work. The problem with it is not the treatment. Its the diagnosis. "If" diagnosed properly and compression area is found then one can go through surgery. The only problem with that is surgery is a gamble and there is NO way to tell If your entrapped prior to surgery. MRI, physical symptoms, nerve blocks etc dont correlate with surgery findings what so ever. And it is very interesting to think what surgeons do when they don't find someone entrapped after surgery. What do they do, I'm sure they lie and say someone was terribly entrapped. And what is this entrapped word. Everyone is entrapped. Nerves have compressions all the time. I think this condition is more of an inflammation condition than anything else. Nerves thicken when they are inflamed giving them less room to glide. Over time symptoms get worse bc of the thickening of the nerve.

This is why eating right is important. Controlling your inflammation in your digestion is probably the most important part. Then you fix the structural problems. I've also researched heavily and found HGH and IGF can in fact help with this condition. However there are no studies done. Everything with this condition is a gamble. That's the problem. Your gambling with your body. How I look at it though is its all about probability. Life is all about probability. Increase your odds of a good outcome and decrease your odds of a bad outcome. So how do you defy the odds....Quite simple, do the opposite of what everyone else is doing. If surgery isn't a success, don't do surgery.

This condition is fu*ked. But every treatment is a consideration. If you feel surgery is right for you than do it. But consider it as a last resort. I just do not see the positive numbers that all these surgeons say.

[nyt]

One must read carefully how "improvement" is defined. Neither of the publications state that 87% or 100% meant their patients were cured. The papers clearly define success and it did not necessarily mean 100% cured. Ezer, please do not try and give the impression that these doctors are stating their patients were cured because that is not what the publications state but it comes across that you believe these doctors are being dishonest in their publications. I read Filler's full publications when it first came out. I do not recall that I was concerned about his statistical methods and that Filler clearly defined the definition of a positive outcome. I have not read Dellon's new publication but just the abstract you linked to. If you read the FULL abstract he clearly states that outcomes correlated with a learning curve of the surgeon and that if a patient had underlying depression/anxiety that was not treated their outcome was not positive. Since I have not read Dellon's publication in full, just the abstract I do not know how he handled the patients that were depressed since it appears they did not have a positive outcome so must have not been included in his final results but like I said I have not read the full publication to see how each group was handled. For me, as long as the publication clearly states how success was defined, how the groups were statistically handled and the statistically method was the correct method to use then the author has not hidden or been dishonest how the data in their paper is treated. That doesn't mean that an author didn't include some patients to bias their statistics but anyone reviewing the publication would not know if the author did that to "massage" their numbers. I think the grey areas for publications become when a patient states this is improved or gone but I have this has not improved, this got worse or I have this new pain how do the authors handle these mixed results.

How they are defining improvement is very common in the medical pain community and literature whether one likes their definition or not. For example, when a patient has a spinal cord stimulator placed as a trial a 50% improvement in pain is considered a success and then one is placed permanently. If a patient had an average pain score of 8 and the treatment dropped it to a 4 that would make me happy. Was a the patient cured, no, but it was improvement. In publications the author define their range and if a patient dropped from an average of 8 to an average of 6 then the treatment would be considered a success, depending on the author. I know when Dr. Howard performed my obturator decompression surgery he was very clear with me how he would define a success with my surgery, if I had 50% improvement in pain or function or a combination of the two. I wanted a cure but Dr. Howard told me realistically that was highly unlikely. You think there isn't much published on pudendal nerve decompression surgery outcomes you should see how little is published on surgical outcomes for obturator nerve damage.

[ezer]

nyt,

One must read carefully how "improvement" is defined. Neither of the publications state that 87% or 100% meant their patients were cured.

Where did I say 87% cured? I said 87% success rate.
I would have been thrilled to have a 50% pain reduction from Dr. Filler's surgery. 50% would have been a great success for me and I would have reported my story on the "success stories" section. I had 0% pain reduction.
I know another person that had surgery with Filler. Result: 0% pain reduction. Oops, what a coincidence. The 2 only unlucky people. Wait, I know a third person. Same story; 0% pain reduction.

I did read Filler's entire paper and I partially based having surgery with him on what he wrote. 87% is disingenuous no matter how you look at it nyt.

Now regarding Dr. Dellon. It is very easy to re-categorize anybody that does not respond to your surgery as a depressed patient. How very convenient. I know 4 people that had surgery with Dr. Dellon. We all compared notes during our parallel recoveries. 5 failures including myself. We were all depressed I guess.

That's not science nyt. Please don't justify their behavior.

I read Filler's full publications when it first came out. I do not recall that I was concerned about his statistical methods and that Filler clearly defined the definition of a positive outcome.

nyt, your last post gives the impression that those surgeons are correct and that you have a 87% chance to get at least 50% better.
With such wonderful outcome that you seem to authenticate, of course you should have surgery.

In what way is it helpful to tell our forum members that those numbers are not suspect in any way and shall be trusted?

[stephanies]

Dom,

I agree with you that it is likely that tight fascia and muscular issues outside the pelvis can create symptoms of PN. I had PN surgery in 2006 and recovered about 85% in 2008 to live a normal life. I didn't realize it then, but looking back, I believe it was my work on tight areas on my legs, buttocks, etc. with a massage ball that was largely responsible for the improvements. Since my pain has come back (about 15 months ago) I have been trying to again work on these areas (and others) with no success. My pain this time is much different, and in many ways more debilitating, than last time. Regarding surgery, I do know some people that have had success with it, although we have seen a lot of failures on this site. I can't be 100% sure that it didn't contribute to my previous recovery and also maybe to the state I am in now.

Stephanies

[Alan1646]

tipna is still there on the way back machine. I just read some old posts.Some links don't work though.

[ezer]

ezer and violet you guys have been going back and forth on these surgery opinions for quite some time.

It is an important debate. You and I believe in a 10% success rate. Violet believes in a 70+ % success rate. We are far apart. I certainly would not have considered surgery if I knew I had only 1/10 chance to get better.

[desperate]

Hey Stephanies,

I'd say your pain came back because you didn't address the problem and the same concept of loading (see above) came into play. Your body laid down more tissue to counter the effects of the surgery. The human body is quite smart yet stupid at the same time. its like breaking an arm. Your body knows how to heal the bone but without proper alignment the body won't heal it properly. Same concept with this condition.

I'd contribute your getting better to the surgery yes...but probably the stretches played a bigger role in it. Oh and fascia stretches are very different than regular static stretching. For example, I have very stubborn and short hamstring muscles. I have been stretching the muscle for a year and I haven't gotten any improvements in ROM. I researched fascia stretches for them and honestly within 3 stretches I was able to touch my toes. I'm telling you. Fascia is bigger than anyone knows yet. You'll see in 10 years, everyone will be talking about fascia. We know too little about fascia until now. Doctors and therapists are only now realizing that treating connective tissue is far greater than treating muscle tissue for improving ROM and other imbalances.

Honestly I'm so passionate about fascia because it wasn't until recently that ive dived head into studying about it.

Oh and most important thing - drink water!!! people don't drink enough water throughout the day. The general rule is 0.6 oz of water X your body weight in lbs = your daily water intake.

Minimum 2 liters of water a day to keep fascia pliable. There are so many things we humans do wrong but the only way out of this condition is changing a pattern of imbalances.

I wish one day we can all stand tall and figure this dreadful condition Out. I know if I ever came out of this condition I'd devote my life to this condition. Makes you truly realize the importance of life. Helping one another out.

Love you all