Untitled
Opening Salvo on pudendal quackery

[1] SUMMARY — PNE ISN’T “RARE" — IT’S IMAGINARY

In 2004 I suffered all the symptoms that some call “classic" pudendal nerve entrapment ("PNE").  I was urged to get surgery for it from the few doctors who supposedly understood that rare condition.  Fortunately, I figured out in time:

 —- the condition isn’t rare — it’s imaginary.  The doctors who claim to diagnose and treat PNE are dangerous quacks.

 —- there are many possible causes of pelvic pain, including inguinal hernias, kidney stones, and infections.  The PNE quacks rush people to mad experimental surgery without excluding well known causes of pelvic pain, and without the patient follow-up needed to determine the surgery works.

 —- I eventually figured out I had an inguinal hernia (well, two of ‘em: one right, and one left) and once they were repaired I was cured.

So I’m fine now, and bicycling again, yeah!

Unfortunately, people are still being led to the pudendal quacks and surgery that makes them worse, disabled, and in a few dramatic cases, dead by suicide.

[2] INTRODUCTION TO PNE

"Classic" pudendal nerve entrapment is characterized by unilateral (left-sided or ride-sided) pain that gets worse from sitting, and (in some cases) moves around (for example, from tailbone to anus to genitals).  Bowel movements may be exquisitely painful. The fact I had only recently become a distance bicyclist — traveling 40, 60 and even 110 miles in a day — clinched the diagnosis.  Three doctors — Ken Renney (by phone), Dr. Stanley Antolak (by phone) and Dr. Goldstein (by email) all told me PNE was “likely" my problem.

Antolak thought I should stop sitting and perhaps in that way avoid the surgery claimed to “fix" PNE.  Dr. Renney and people on the websites that discuss PNE urged me to get treated right away.  They said my nerve was trapped — stuck between ligaments — and the more I waited the more the nerve might be damaged.  I was also told there were very few places that might help me:

— Nantes, France where doctors have been doing decompression surgery for PNE for 20 years

— Ken Renney and his gang in Houston, Texas who trained (for a week) with the Nantes mob

— Stanley Antolak in Minnesota (who became a PNE “specialist" after he was fired by Mayo Clinic for his involvement in a PNE surgery gone wrong)

Since 2004 the list has grown to include others, including Arnold Dellon at Johns Hopkins who claims to have improved on the “Nantes Protocol" and Michael Hibner of Arizona who spent 2 weeks in Nantes learning the PNE racket.  This elite group of quacks is supplied with its patient-victims by a network of “feeders" and parasites including Hollis Potter, the star radiologist who’s only solution for pelvic pain is to look for abnormalities of the pudendal nerve (which she finds more often than not), and a host of botox injectors, “Stanford Protocol" massage therapists, and nerve block specialists who’s procedures often make pain worse — pushing their desperate patients one step closer to the PNE surgery butchers.

Dr. Renney himself received PNE surgery from the Nantes mob, with Dr. Antolak observing.  Dr. Renney is a former bicyclist who — perhaps thanks to his PNE “cure" — sits with his legs wide open, and waddles like a bowlegged ape.  When I asked him by phone if I could ever hope to bicycle again if I received the surgery, he angrily said “no."  He said I should be happy to function afterwards on any basis.

When I saw Hollis Potter in 2004 she found only “minimal scaring," but that was enough: the diagnosis was PNE.  I suspect Hollis, who is a radiologist, wasn’t supposed to be speaking to patients, because she didn’t speak to me directly.  She was on speaker phone while I sat with Dr. Daniel I. Richman who became her puppet: Hollis spoke, and Richman’s lips moved.  Richman tried to hand me brochures describing pudendal nerve decompression surgery provided by surgeons in Nantes France — among the very few doctors, Richman claimed, who understand PNE.

I refused the pamphlets.  By that point, I already knew about the surgeons of Nantes.  I told Dr. Richman that — anecdotally at least — those surgeries had gruesome outcomes.  Some patients felt worse, and some committed suicide.  And more terrifying was this: after 20 years of experimental PNE surgeries the Nantes doctors never published a study because they couldn’t.  They never collected the necessary patient feedback.

Dr. Richman shrugged his shoulders — not denying the Nantes horror stories, but urging me to Nantes anyway.  I was in a tough spot, Richman admitted.  But Nantes was my best bet, and the sooner the better least the entrapment cause worse injuries.

He and Hollis should have known better — PNE is *obviously* idiotic.

[3] THE HISTORY OF PNE

Fortunately, I am an avid — even compulsive — researcher, and by the time Hollis Potter and Richman urged me to travel to the Nantes for the PNE “cure" I already knew that PNE does not exist, and that the Nantes doctors are a dangerous mob of  profiteering butchers.

Nerve surgery for PNE is apparently the brainchild of the late Dr. Ahmed Shafik, an Egyptian surgeon.  Shafik published the details of his pudendal surgery in 1991.  Shafik boasted he “described more than 40 new syndromes" and many “new surgical techniques."  He was also professionally disciplined, arrested, and prevented from working as a doctor several times as a result — a point of pride, apparently.  www.ahmedshafik.com/About.htm Among Shafik’s “discoveries" is his view males become sterile as a consequence of wearing polyester underwear.

The Nantes mob consisting of Drs. Labbatt, Bensignoir, and Robert — the mob who’s surgeries you advocate — supposedly independently devised a surgical approach for PNE around the same time. The Nantes mob is the most influential of the PNE bunch.  They taught others including the Renney/Texas gang who trained in Nantes for one week, and Dr. Stanley Antolak in Minnesota.  Arch quack Dr. Arnold Dellon in Maryland and others claim to base their PNE innovations on the “Nantes protocol."

PNE surgery often involves cutting pelvic ligaments, and sometimes cutting pelvic muscles (permanently disabling them) with the result that pain patients who receive the surgery often suffer terrible physical limitations.   PNE surgery patients frequently debate the severity and incidence of “pelvic instability" following PNE surgery — which, in at least one case, means being unable to walk up stairs.

Fortunately, by the time Hollis Potter and her puppet, Daniel Richman, gave me pamphlets to the butchers of Nantes, I already knew PNE and the surgery for it are deadly quackery.

[4] HINT #1: IF PNE WAS REAL, THE SURGERY TO CURE IT SHOULD WORK

The European Association of Urology, in its “Guidelines On Chronic Pelvic Pain," states:

   "[T]he reality is that pudendal nerve neuropathy is probably
   only a likely diagnosis if the pain is unilateral, has a
   burning quality and is exacerbated by unilateral rectal
   palpation of the ischial spine, and the pudendal motor latency
   is delayed on that side only. However, such cases account for
   only a small proportion of all those presenting with perineal
   pain and the proof of the diagnosis resting on relief of pain
   following decompression of the nerve in Alcock’s canal is
   rarely achieved."

In other words, if PNE was real, the surgery to fix it should work.  But it doesn’t work.

And the reality is worse.  The PNE quacks never follow the protocol for experimental surgery (patient follow-up, control group, impartial review board).  In fact, the Nantes mob, the Texas gang, Antolak, and Dellon do almost no follow-up of any kind.

Except for a growing number of anecdotal horror stories (of which there were many, even in 2004) from patients complaining about being worse from PNE surgery, there was (and is) no basis to know if anyone is helped by the surgery, or how many are maimed and dead from suicide.

Dr. Robert J. Spinner did PNE surgery at Mayo Clinic under the direction of Dr. Stanley Antolak.  The surgeries failed — failed horribly — and Dr. Antolak was fired as a result, and Mayo Clinic stopped performing PNE decompression surgery.

Dr. Rodney Anderson was a urologist at Stanford University.   He also stopped performing PNE decompression surgeries because they don’t work.  Sometime on or before October 2004, Dr. Anderson wrote:

   “I have… performed surgical pudendal nerve dissection as
   well as placed electrodes on the nerve to alleviate pain
   syndromes. My experience is limited and without much success.
   I believe there are surgeons who are having reasonable
   clinical success with this procedure, but the scientific
   literature is not robust and needs further clarification;
   furthermore this procedure should probably only be done under
   a scientific protocol, approved by a human subjects
   institutional review board. I am not at present referring
   patients for these surgical procedures."

In short:

— Mayo Clinic found PNE decompression surgery does not work, and stopped performing it.

— Stanford University found PNE decompression surgery does not work, and stopped performing it, and the surgeon involved believes the surgery should be performed — if at all — only under the protocols for experimental surgery.

[5] HINT #2: THE TESTS TO “PROVE" PNE ARE NONSENSE

EMG and Pudendal Nerve Motor Latency “PNMLT" tests are purported to diagnose PNE.  PNMLT is a kind of nerve conduction velocity ("NCV") test.  But those tests diagnose nothing:

   “diagnosis solely by EMG plus NCV… may be either wrong
    or detrimental to the patient"
   (based on guidelines from the American Medical Association)

PNMLT tests are what con men call “the convincer" — mere hocus pocus to give the suckers a seemingly objective reason to visit the PNE butchers.  And in 2004 there was plenty of anecdotes to support the conclusion that the PNMLT and EMG tests are bunk:

— anecdotally, there is no correlation between test results and the claimed PNE condition — for example, patients with “bad" PNMLT scores on one side were found only to be entrapped on the other.

— patients were advised “An above normal reading on the PNMLT… does not indicate that the [pudendal] nerve is trapped, or that decompression  surgery will help. The nerve could be damaged for other reasons. But nerve entrapment does not always result in an above normal reading on the PNMLT."

And surprise: the Nantes mob recently stopped relying on EMG and PNMLT tests — admitting they diagnose nothing.  And yet Texas gang apparently still uses those tests.

Dr. Arnold Dellon boldly invented an “improvement" he calls a Pressure-Specifying Sensory Device ("PSSD") which he uses to test for PNE.  But PSSD tests are quackery, too: mainstream medicine has concluded “there is no scientific evidence of effectiveness" and “several published studies failed to demonstrate the utility of PSSD in establishing a diagnosis."

All quackery has its proof.

Dr. Arnold Dellon is guilty of other pudendal quackery. For example, he boasts he did a study of a small group of corpses, looking for potential sites of pudendal anomalies, and by heavens, he found them!  That makes his “research" one step more mad than Hollis Potter’s, because Dellon’s anatomical investigations were made without regard to any symptoms those corpses had when alive.

But Hollis Potter’s quackery is bad enough — she trains her whizbang MRI solely in the place she expects to find an answer without any recognition of well known causes of pelvic pain that lie elsewhere.  She looks for a pudendal story, and like Dr. Dellon, finds it every time, thereby adding to the stream of pain pilgrims on their way to PNE butchery.

And she may be truly nuts — so determined to be the superstar radiologist, seeing what no one else sees, that she hallucinates.

http://www.pudendalhope.info/forum/viewtopic.php?f=69&t=2490&start=10

   Re: Hollis Potter Now Giving Great MRI Protocol In Other
   States Postby Emily B ¯ Thu [quote]Mar 08, 2012 4:37 pm I had
   the MRI in Phoenix with Kalinkan through orders by Dr. Hibner.
   Kalinkan does have the software and protocol. I had the MRI
   with and without contrast. They found nothing. Dr. Hibner told
   me that he does not put much weight on the MRIs now. He had
   hoped the MRI would turn out to be a useful tool for
   diagnostics and surgery decisions. However, his experience has
   been that nearly all of Potter’s MRIs seem to find something
   whereas Kalinkan’s MRIs usually find nothing.
Hibner, Kalinkan
   and Potter worked very closely on this.

In other words, this situation is worse than Dr. Potter seeing MRI shadows, and mis-interpreting them as the source of pelvic pain.  Other radiologists using her software and equivalent imaging technologies don’t even see the same shadows.

Are you scared yet?


[6] MORE REASONS TO KNOW PNE IS QUACKERY

In 2004 I found other reasons to believe that PNE is an imaginary condition, and the surgery claimed to fix it only causes harm.  For example, the Nantes mob reported seeing bruised nerves, but the Renney/Texas gang and Mayo Clinic’s Spinner did not.  And while there is an injury that may be caused by bicycling, it is ischemic — not “entrapment" — and characterized by numbness (not pain) that is relived by not bicycling, or by learning how to sit on a bicycle saddle.

I also learned that patients who boasted of cures thanks to PNE surgery were deceiving themselves.  One found his symptoms returned when he returned to work and sitting.  Another claimed to have stopped using all drugs, but later admitted using a “small" Fentanyl patch (which, dose for dose, is 200x more potent than morphine).  A third claimed improvement, but only years after the surgery, and then only after a ketamine induced coma.

PNE isn’t just a faulty diagnosis.  It’s a catastrophic circle of profiteering surgical mills and the shills — including you —- who lead patients to them.  The PNE websites have doctor “advisory boards" and funding which, naturally, urge patients to accept they have PNE, stop bicycling, and see a PNE doctor soon.  At least one of the websites (TIPNA.org) is run by someone (Gregory Thibeaux) who is paid a commission on patients he leads to the surgical mob in Nantes.

The final part of a scam is the “blow-off" — the effort by con men to divert the attention of their victims.  In PNE world the blow-off is accomplished by urging patients to wait for years for any improvement.  Muscles spasm in response to chronic pain, so post surgical PNE patients are urged to botox injections in pelvic muscles, and fruitless months of pelvic masseuses inserting fingers rectally attempting fruitlessly to “re-train" pelvic muscles to relax.

The tragedy here is once patients get suckered into the PNE scam, they are unlikely to hear about the real, long recognized, and often treatable mainstream causes of pelvic pain — the long known causes of which PNE “experts" are wholly and wilfully ignorant.

[7] WELCOME TO THE MAINSTREAM!  — THE DIFFERENTIALS FOR CHRONIC PELVIC PAIN

Doctors despise patients who Google, but they should try it sometime.  This will get you started (type exactly as shown):

   “groin pain" “differential" inguinal infection stone -pudendal -PNE

(a “differential" is a list of possible explanations for symptoms — which ideally should be customized for particular patients, including their age, gender and specific symptoms).

Then try variations on that Google search — for example, substitute “pelvic" for groin, or add “women OR female" or add “chronic pain."

In 2004 my searches disclosed many differentials which described many long-recognized — and treatable — causes for pelvic pain, among them infections, inguinal hernias, kidney stones, anal fissures and many more — but none of them are “pudendal."

The pudendal quacks act as though totally ignorant of the known mainstream causes of pelvic pain

[8] HERNIA PAIN IS THE PAIN THAT GETS WORSE FROM SITTING

One element on the differential for pelvic pain is inguinal hernia.  It causes pain that gets worse from sitting, and from any activity that increases intra-abdominal pressure pushing intestines through a breach of the abdominal sack into a cluster of three nerves in the inguinal canal.  Bowel movements can be exquisitely painful (as a stool pushes the intestines into the nerves of the inguinal canal).

But when lying down (for example, during a night’s sleep), the hernia seems to disappear — the intestines pull back, giving the nerves a chance to recover.  In the morning comes sitting, and the pain process restarts.

Hernia’s that are small can hurt a lot, and sometimes the ones that hurt the most are “occult" aka “nonpalpable" (fancy words to mean a doctor may have difficultly detecting them by touch).  But the fact hernias disappear when lying down makes them almost impossible to image with an MRI or CT Scan (imaging studies that are usually taken lying down).

Pain can be divided into two categories:

— direct pain (where you hurt is where the problem is)

— referred pain (where you hurt is NOT where the problem is)

For example, if your left arm hurts, the first thing a doctor might do is look at your arm (direct pain).  But if you didn’t actually fall on your arm recently, he may wonder if the pain is a signal of an impending heart attack (referred pain).  Similarly shoulder pain usually means your shoulder is injured — but it could mean your spleen is burst (Google: “Kehr’s sign").  Consequently, pain can be a very ambiguous symptom — it may not signify where the problem is.

Hollis Potter and her magic whizbang are wholly ignorant of this basic medical principle.  People have pelvic pain, so she looks at their pudendal nerves, and she assumes any anomaly she finds explains the patient’s symptoms — and then the surgeons march in, mucking with nerves and structures that are wholly unrelated to the problem.  She has done no study which might disclose that people without pelvic pain have exactly the same anomalies.

The pain from an inguinal hernia is often referred pain — pain that moves around from “sitz" bones to tailbone to anus to genitals, and pain that can be dull or burning.  Anal fissures and kidney and bladder stones and other things cause referred pelvic pain too.

That nonpalpable inguinal hernias can cause severe referred pain in men is well known. For example, see:  http://hernia.tripod.com/symptoms.html

Nonpalpable inguinal hernias can cause severe referred pain in women, too, as this recent article suggests:
www.nytimes.com/2011/05/17/health/17brody.html

And the fact nonpalpable inguinal hernias can cause pelvic pain for women is old news. See, for example, Non-palpable inguinal hernia in the female (1988) by Spangen L, Andersson R, Ohlsson L. (Department of Surgery, Central Hospital, Karlstad, Sweden); and Herniography in Women Under 40 Years Old with Chronic Groin Pain (The European Journal of Surgery).

So, surprise: “classic PNE" is often a classic inguinal hernia.  A lot of PNE suffers are weight lifters, and some already had hernia repairs.  Over 600,000 hernias are repaired in the USA *every year* — and while most of those are not the kind that cause mysterious severe pain, the problem is very well known.

[9] MY STORY

In my case I had a puzzle.  Antibiotics were ineffective for me at first, but later — when my pain was at its agonizing worse — they helped me a great deal. I was better, but not cured.  Polymerase chain reaction tests often revealed fecal bacteria (Enterococcus Faecalis) in urine, and while that is an anomaly, it is not proof of an infection.  Some urologists believed I did not have an infection.  Others told me I would need to take antibiotics for the rest of my life.

Then I read hernias can cause recurrent infections, and later was told by a hernia surgeon that infections can make the referred pain from a hernia much worse.  Another hernia surgeon explained that small hernias can hurt more than large ones because they concentrate their force over a smaller area.

Presto!

For me, an inguinal hernias explained everything — why I got an infection, why antibiotics helped but did not cure, and perhaps even why PCR tests revealed fecal bacteria.  They especially explained why I had the pain that was worse from sitting.

So I had hernia repairs (left side in December 2006, right side in January 2007) and I’m okay now — happily bicycling again since 2007.

[10] HOLLIS POTTER — RADIOLOGIST SUPERSTAR — AND *QUACK*!

Hollis Potter at the Hospital for Special Surgery may magic skills to peer into MRI shadows at a broken ankle.  But her PNE career is pure quackery, and because she’s sent patients to the PNE quacks in Nantes and Arizona she’s maimed people as a result.  Specifically:

— She focuses her whizbang MRI only she expects an answer — declaring any pudendal anomaly, however trivial, to be proof she looked in the right place.  She never investigates whether people without pain have exactly the same anomalies.  This is the classic error of shooting a diagnostic arrow, then drawing a circle around it — a bullseye every time!

— she routinely advocates the obviously quack and dangerous Nantes-protocol surgeries in total disregard for the well known and curable conditions described by mainstream differentials.  She ignores the fact that pelvic pain often or usually is referred pain — which means the problem is not where it is perceived, and not where she focuses her MRI.

In short: here MRI is just another PNE scam — another instrumentality to give the illusion of an objective reason for PNE surgery, and to send the suckers in pain off to Nantes.

All quackery has its proof.

[11] IF YOU THINK YOU HAVE A HERNIA

I’m not diagnosing anyone, and I have zero medical training — I’m just schmo with is hands on the Google trigger.  There’s that ol’ “differential" (list of possible cause) of over a dozen things that might cause pelvic pain, and the exactly applicable list depends on who you are (age, gender, medical history).

But I do know in my case the source of my pain turned out to be an inguinal hernia, and the first two hernia surgeons I visited didn’t find it.

— the first was well meaning, I think, but he just didn’t find it.

— the second — Zachary Gleit — was a special horse’s ass.  He said I didn’t have an inguinal hernia, and reviewed my CT Scan to prove it.  He was *sure* I had no hernias.  But it only took me 15 minutes of Googling to be positive he was misguided — I earned that nonpalpable aka occult hernias are often not revealed by a CT Scan in part because they’re taken while the patient is lying down (so the intestines pull back, making the hernia nearly impossible to see).  CT Scans are *the wrong test*! — and yet that’s what Gleit uses, and his chief of surgery backed him up.  Idiots!

And, yes, I can say idiots: there is a huge literature on this subject — articles that all begin “Because CT Scans / MRIs / etc. are ineffective to detect inguinal hernias, we tried something else…."   In some cases that “something else" is a dye injection technique (looking for a slit in the abdominal sack like the way plumbers look for a leak in a pipe by blowing smoke through it).  Others use “dynamic ultrasound" — making a patient move around, and squat, then stand up (and so one) while scanning for the telltale bulge of intestines poking through a hole in the abdominal sack.  Really good doctors trust their fingers.

So the first two hernia surgeons I saw didn’t believe I had a hernia — but hernia surgeons 3, 4 and 5 all independently agreed I had TWO hernias (one right, and one left) in part based on a more painstaking physical exam, and in part based on knowing that small hernias can cause the pain that gets worse from sitting.  Open surgery — and the fact I no longer hurt — proved they were correct.

You need to find a hernia surgeon to be properly evaluated for the possibility you have a hernia, and in particular you need a hernia surgeon who has two characteristics:

  1) the surgeon does NOTHING but repairs hernias ("a dedicated" hernia surgeon); and

  2) knows the pain pattern (that hernias that cause pain usually don’t hurt much in the morning, and get worse during the day, especially from sitting)

These links can help you to find a dedicated hernia surgeon:

Here’s a Google that finds dedicated hernia centers…. http://directory.google.com/Top/Health/Conditions_and_Diseases/Digestive_Disorders/Intestinal/Hernias/Surgery/Surgeons_and_Clinics/

By zip code for a particular type of hernia repair
http://www.herniaoptions.com/dtcf/components/locator

Another by the zip code method sponsored by a drug company that makes a particular repair solution
www.herniasolutions.com

Guys in NY who repaired 30 or more during 2002 
http://www.medicalconsumers.org/Performance_Reports_2002/NY/Hernia2002_NY/page5.html

California
http://www.hernia.com/multilocations.html

To discuss hernias
http://hernia.tripod.com/HerniaInstitute_index.html

[12] TAKE ME BACK TO OLD BYZANTIUM

One of the interesting aspects of this story is how doctors these days don’t make a diagnosis — they ignore their patients, and let machines do the work.  And look how it goes wrong!

 —-   Hollis Potter’s whizbang hi-res MRI convinced Hollis I had PNE — a condition which doesn’t exist.

 —- Dr. Zachary Gleit “proved" I did not have inguinal hernias by looking at a CT Scan.

Both were dead wrong.

Meanwhile, older doctors — used to listening and using their fingers and noses — figured out my problem.

To believe the PNE story, you’ve got to believe the rap that pelvic pain is mysterious, a “wastebasket of ignorance" in need of innovation.  Bunk!

People have been complaining of pain and getting poked by doctors for literally 1,000s of years.  The ancients weren’t quite so ignorant as we like to believe.  For example, very sophisticated hernia repair surgeries were being performed over 1,400 years ago by surgeons in Byzantium — which we know because one of the surgeons back then — Aetius of Amida — wrote a multi-book treatise explaining his techniques. http://www.springerlink.com/content/89bw4bl85jagwgy7

In the vast majority of cases, the explanation for medical conditions is boring, ordinary, and known for centuries.  What pelvic pain patients need isn’t a genius, but a plodding competent doctor who is welling to research the list of possible causes, and go through the list.

Rare conditions are…. rare.  What’s the chance you’re so special?

Crazy Dr. Ahmed Shafik — the  Egyptian surgeon who started PNE surgical quackery — was proud he was arrested and prevented from practicing medicine a few times — he thought it proved he was a bold innovator.  But he wasn’t — he was a dangerous quack, and ditto Hollis Potter, Arnold Dellon, Stanley Antolak, Ken Renney, Shelton Jordan the notorious nerve block maniac, and the Wise/Anderson Stanford massage protocol (which has nothing to do with Stanford University) and the Nantes mob of consisting of Drs. Labbatt, Bensignoir, and Robert.   

The Egyptians who arrested Shafik knew what they were doing.

The rest of the pudendal quacks deserve the same treatment, or jail.

The only person who is going to save you… is you.

NorthernSpy

The “NorthernSpy" is my favorite New York heirloom apple

northernspy1 [@] aol.com