"Most patients felt hopelessly isolated as the world's
only victim of a malady without a name. Patients wondered
whether their imagination was the source, but they knew
it was not. They report that acquiring a name for their
affliction and contacting other sufferers gave important
help even while symptoms persisted." - Source: - PNE:
Early Symptoms, Operative Techniques and Results.
On the other hand, there have been some PN sufferers that have had pain for over 20 years and have had a great response to surgical intervention. Surgery is non reversible and in a very few number of people, their symptoms have actually gotten worse. Making a decision to have surgery should not be taken lighly.
If you have PNE symptoms, you are in a tricky situation.
There are so few experts in the world that you have only
two basic choices: go see the experts or educate your doctor.
There are several experts around the world that are now treating pudendal neuralgia. This illness used to be so rare that others from around the world had to travel to France to have testing and/or surgery. Now, there are many more doctors available throughout the world that are able to treat pudendal neuralgia. For a complete list, go to List of Doctors.
Here is an excerpt from Prof. Robert:
"
Most of the time in fact the compression of the nerve trunk
is at the level of the claw between the sacro spinal and
the sacro tuberal ligaments. That is why I don't like to
call this syndrome the Alcock syndrome, as far as mainly
the compression is more important outside of the canal.
Of course the Alcock tunnel syndrome does exist That is
why, according to the medical findings we start by blocks
at the level of the claw. If it doesn't work then we do
the second block in the tunnel. The block at the level of
the claw is done under fluoroscopy. The other one is scan
guided under CT view. Two blocks can be done at each level
on one or both sides but no more. Usually the first blocks
are made in the US and we do the others during our consultations.
"The second reason is that blocks constitute a very
important diagnostic test. If they don't work at all we
can suspect a bad diagnosis. If they do well for a while
(several days or weeks) they must be done another time.. The surgical indications arise from the failure
of those blocks with time.. The main problem arises
for patients without any effect after blocks. I do believe
that then they are not candidates for surgery. A block
which may lead to disparition of pain during some hours
is nevertheless a good diagnostic test for us and may lead
to surgery. So, the guideline could be as follow: Blocks
at the two levels without any efficacy = bad diagnosis.
Blocks at one or two levels with "long improvement"
(some days or weeks ) = try one block again at the two levels.
If it doesn't work = surgery with very high hopes. Blocks
with very short amelioration = surgery. That is why we usually
do another block during our consultation to guess the short
efficacy, at least, of a well done block.
"Sincerely yours. R ROBERT"
As PNE becomes more widely known in the medical profession,
we can expect to see more experts emerge.
Show them the following documents in approximately this order:
1. This document.
2. PNE
by Prof Robert, 1997. This is the definitive article on
PNE.
3. Discuss with your doctor about various non invasive treatments such as physical therapy and medications to see if they help with the pain.
4. Rule out any other disorders. An MRI of the Sacral Spine and Pelvis could help to rule out any issues with these areas. Other types of bloodwork can rule out prostasis and other disease that can cause peripheral neuropathy, like Lyme's disease.
4. Print the male or female pudendal nerve image (see discussion
below) and use it to discuss details of your pain with your
doctor. Try to think and talk in terms of how nerve damage
of some sort could be causing pain in specific nerve areas.
Looking at the image, discuss how to diagnose your problem
with specific tests at various places on the nerve. Tests like the EMG, and PNMLT may be able to provide accurate information and be able to diagnose a latency of the pudendal nerve.
5. Then suggest they study the many documents, images, and
material online at this site and others.
6. However, it's probably best that you go see an established
expert. But these documents and this site can give your
doctor a general overview of PNE. This can lead to avoidance
of unnecessary treatment, avoidance of delay, and to the correct
referral. Those three things should be your goal.
8.
What should I do first? Stop making the problem worse.
The first thing to do is stop making the problem worse.
Minimize your sitting time and when you do sit, sit on a
cushion with a center cutout. This should be large enough
to avoid pressure on the areas where pressure causes pain,
and ideally the entire pudendal nerve area to be safe.
Don't try to be a hero and "tough it out." If
you are a cyclist, stop that altogether. Minimize sitting
like a fiend. This is called hyperavoidance of sitting.
If you doubt the importance if this advice, just listen
to the many tales of woe from those who sat a lot and now
wish to high heaven they didn't. The reason is excess
sitting can cause irreversible nerve damage. There is one PN sufferer whom has felt almost 80 - 90 percent cured after her surgery. She sat for 3 days straight, filling out paperwork and her pain came back, almost to the level that it was prior to surgery. Thankfully, after not sitting again for a period of time, she is now back to feeling good again.
The
two images on the right show typical pressure distribution
patterns for sitting upright in chairs. Note the extreme
pressure on the two ischial tuberositiy bones, which normally
carry about 75% of your weight when seated. This can be
greatly reduced through use of contoured cushions or chair
seats. Note there is less pressure in the central area.
This can be further reduced with a trough or hole in the
center of a sitting cushion. But the best thing to do is
sit less.
You can also tilt your seat angle forward about 8 degrees
and/or lean forward. Both put more weight on the thighs
and less on the problem area. Seat tilt is better because
of the better back angle and reduced sheer pressure. Seat
tilt can be accomplished with an adjustable chair, putting
books or blocks under the back legs, or a wedge shaped piece
of foam. A kneeling chair can be used for several hours
a day for an even large tilt, but this will probably require
chair modification to use a better cushion.
Also see article on benefits of a forward
sloping seat.
You
can also consider the latest generation of office chairs
or bicycles. The three images on the right show the more
even pressure distribution in the
buttock area and the absence of high ischial pressure, with an appropriate cushion or chair.
We do not have any one cushion or chair that works for everyone. Some PN'ers have used toilet seats and put canvas around it, to sit. Others have bought high quality seat cushions which are more expensive and others have bought foam from their local store and made a U shape for their cushion. If you can keep pressure off of the pudendal nerve, any cushion would work fine. It might be worth looking into the different companies that offer U shaped cushions and select the one that you think may work for you. Some cushions have weight limits, so be sure to read carefully, the manufacturers description of the cushion and what the weight limits are. Some may need a more heavier and firm cushion, if they are larger, while smaller individuals might be OK with a softer cushion. Just do your research before you buy.
They have also now come up with some bicycle seats to help with the "cyclists syndrome". The name of one of these seats is called a "horse saddle". When looking for a good bicycle seat, you want to make sure that their is a cutout in the middle of the saddle of the seat, so it can take the pressure off of the nerve. All of the cushions and/or bicycle seats though still need to be used in moderation, as some pressure may be put on the pudendal nerve while sitting, inadvertantly.
9.
What should I do second? Accept your condition.
The second thing to do is accept your condition for
what it is. Receipt of bad news causes a well known
five step process in humans: denial, anger,
depression, bargaining, and finally, acceptance.
This is the Cycle
of Acceptance, also known as the Cycle
of Grief. There is also the Loss
Process. One usually bounces around between steps before
finally getting to and remaining in full acceptance. If
the bad news is minor the cycle will be swift and barely
noticeable. If major, the cycle can take years or never
be completed.
The reason you must come to accept your condition is
that if you don't, you will be less rational. This will
cause two things: you will probably make your condition
worse, and you will not be able to self manage your case
very well. You will be stuck in the cycle and find yourself
frustrated and angry at doctors who fail to help you, when
what's needed is a calm, cooperative, investigative attitude.
If you find yourself angry or depressed much more than usual,
you are stuck in the cycle. When it comes to mental clarity
and happiness, it's not the pain but the cycle that matters
most.
As an example, I'm constantly saying to myself, "It
could be worse". This helps me to accept that
my condition may never improve, and that if it doesn't
I have a lot to be thankful for anyhow. I have many friends
with worse medical problems, some of whom have died. Until
I accepted my condition I was so full of anger at doctors
that I was unable to manage them or talk to them effectively.
I was in one big emotional knot, barely moving forward
with a rational plan.
While it's true that the US medical system is full of
doctors whose only goal is to get you out of the door
in 15 minutes so they can see 2000 or so patients a year,
it's also true that no system is perfect, the one we have
is much better than the one we had 100 years ago, and
there are a few good doctors who care. The reason
so many doctors are in a rush and assume they know all
there is to know in their speciality is because the cost
management side of the health care industry causes them
to behave that way. The system is faulty, not the doctors.
The idea is to not blame others, which is scapegoating.
Instead, don't blame anyone. Rise above that low level
of thinking and see the situation for what it is.
10.
What should I do third? Develop a diagnostic plan.
The third thing to do is develop a diagnostic plan
with your doctor. Remember now, you may or may not have
PNE.
This shows a good diagnositc plan strategy for those whom would like to Rule Out a Pudendal neuralgia/PNE diagnosis..
1.
Is the source of the pain the pudendal or the posterior
femoral cutaneous nerve?
2.
Try all non invasive techniques first, like physical therapy and medications to help with neuropathic pain..
3. Rule out other conditions like spinal issues or pelvic issues by getting an MRI of the Sacral Spine and the Pelvic area.
4. Rule out other conditions by having bloodwork to rule out other sources of peripheral neuralgia, like Lyme's disease.
3.
Do a pudendal nerve motor latency test. (PNMLT) and EMG test, to see if there is a latency.
4. If physical therapy is non effective, the medications are not giving you enough relief and your quality of life is very low due to intense pain, then you can consider options 5 and 6.
5. Have the Pudendal Nerve blocks completed.
6. PN decompression surgery might be considered, if PN blocks had a positive result.
The collection of all these tests is called a workup.
An incomplete workup causes false assumptions, which can
all too easily cause a false diagnosis, a guess, no diagnosis
at all, or a wrong next stage plan. An excessive workup
causes confusion, delay, and unnecessary expense. Only
an expert can determine what a patient needs for a complete
and non-excessive workup.
Remember that most tests turn out normal and so serve
only to rule out an area. Diagnosis proceeds just as a
detective works: proof by elimination and revelation of
cause and effect. Thus in a difficult case many, many
tests are necessary.
11.
What is a nerve block?
In the context of PNE, a nerve block involves injecting
a liquid at a precise location near a nerve. For a small
nerve like the pudendal that takes slightly different paths
in different people, this requires more than just studying
a person's body and deciding where to insert the needle,
at what angle, and how deep. It requires imaging of some
type, such as Xray (fluoroscope) or CT. Without the accuracy
these imaging systems provide, it is difficult or impossible
to know if the needle tip is located correctly. If incorrectly
located, the nerve can be damaged or the injected liquid
will be too far away to have its intended effect. Dr. Bensignor
says the needle tip must be within one millimeter of
the target.
There are two main types of injected liquids: a local anesthetic
and slow-release steroids. The local is a short term diagnostic
tool. If the pain goes away and stays gone for the short
term, the location was correct and the nerve can be suspected
of being a contributor or the sole source of pain. The steroids
are a long term therapeutic attempt. In some cases they
will cause the nerve, if it is irritated, to get better.
This can take days or weeks, and improvement may be temporary
or permanent. This delay explains why physicians prefer
a delay of several weeks between nerve blocks with steroids.
If the nerve is not irritated, the steroids have no effect. The local anesthetic is usually lidocaine and heparin. The long term anesthetic is usually cortisone. Although, sometimes the doctors will mix different anesthetics for different people.
Two main locations are used. The ischial spine block is
done by injecting into the sacrospinous ligament. Alcock's
canal block is done by injecting into the sacrotuberous
ligament. These are not the same as the blocks carried out
for childbirth pain. In some cases the blocks may worsen
the pain a little but this should last only a few days.
It appears that steroids have less than a 5% chance of curing PNE. Of the many nerve blocks that Dr. Ken Renney's team has done, they have "cured" only one patient with nerve blocks alone. This was a 17 year old male football player who had had the condition for only 3 weeks. After two injections he returned to football with "no discomfort." As Ken wrote to me on 10/1/2003:
"We have only cured ONE person [with nerve blocks] since we started and I have seen about 150 patients. Not great stats but it's the truth."
This agrees with the generally low percentage rate seen in PN patients as a whole on the discussion forums. We were all scratching our heads. No one seemed to know anyone who had been cured by nerve blocks alone, though a few had seen a reduction in pain. For a few people that have undergone the nerve blocks, there have been some that have seen a permanent worsening of symptoms.
When the nerve block is conducted under guidance, they usually have the patient lay down in the prone position. The doctor will put in an anesthetic, to make the buttocks numb, so that you can't feel the needle as much as it is trying to find it's target, the pudendal nerve. When the doctor is able to find the pudendal nerve, he will then inject either the local aneesthetic or the long term steroid. The procedure itself lasts approximately 30 minutes. This is done on an outpatient basis. No overnight stay is required. If you feel no pain, it means that you had a positive response to the nerve block and the pudendal nerve is the probable culprit. If you still have pain after the block, it concludes one of two things.
1. The pain is not as a result of the pudendal nerve or
2. The physician did not get close enough to the nerve to feel any effects. Usually the physican might order another block to make sure that they can entirely rule out pudendal neuralgia, by trying to see if they can get close enough to the nerve again.
Below are some great pictures of what to expect when receiving a nerve block. The following picture is a CT guided photo shows the optimum placement of where the needle to be, in this particular person.
12.
What is the Pudendal Nerve Motor Latency Test (PNMLT) ?
The full name is the pudendal nerve distal motor latency
test. As the "Consensus Statement of Definitions for
Anorectal Physiology and Rectal Cancer" for the United
States defines it:
"Pudendal nerve latency is the measurement of the
time from stimulation of the pudendal nerve at the ischial
spine to the response of the external anal sphincter.
Normal pudendal nerve terminal motor latency is <2.2 ms."
This means the normal response time should be 2.2 milliseconds
or less. Other points besides the ischial spine can be used
for the test, which will cause a different response time.
Dr. Robert's approach uses several different points. The
most common has a normal latency of 4.0 ms or less.
The pudendal nerve is found in the pelvis. Right and left branches of this nerve extend to the bladder and bowel sphincter muscles. When the nerves and muscles perform normally, we have control of bladder and bowel functions without discomfort. A problem with pudendal nerve function may lead to loss of control of the anal sphincter muscles. Such problems may cause leakage of urine or stool, conditions referred to as urinary incontinence and bowel incontinence. Problems with pudendal nerve and sphincter function may also cause chronic constipation or rectal pain.
Description of PNMLT and EMG testing
The most widely used method of electrphysiological testing of pudendal
nerve function is that described by Kiff and Swash at St. Mark’s Hospital in London. They used a rubber finger stall that has two stimulating electrodes at the tip and two surface electrodes for recording mounted three cm. proximally at its base. The index finger, mounted with the device, is inserted into the rectum and placed on the ischial spine. Electrical stimulation is then initiated and the latency of the response to the anal sphincter is recorded on surface or needle electrodes. The normal mean terminal latency is 2.0 +or – 0.3 msec. It must be pointed out that the pudendal nerve terminal motor latency test (PNTML) is solely a motor study, and is of importance only if the study is abnormal. In other words, the sensory nerve fiber component of the nerve
more peripherally located can be compromised without involving the motor fibers. This anatomical situation can result in a patient with sensory fiber compression and pain having a negative PNTML test. In addition the test does not indicate the extent of injury or entrapment, but only if the nerve is responding abnormally. A comprehensive examination should include sensory nerve tests; as well as testing of the components of motor function, and EMG of the pelvic floor. With this information one could ascertain the severity of the damage i.e., if there is axonal damage or focal demyelization, determined by the motor amplitude and EMG characteristics; if the process is of recent or longstanding; and if there is an attempt to regenerate (needle EMG). Dr. Benson has developed a sensory testing method, based on the bulbo/clitorocavernosus reflex, in which a mild stimulus is applied to the glans penis or adjacent to the clitoris and the reflex conduction time to the pelvic floor muscle is measured.
Source
PROCEDURE: You will be asked to undress from the waist down, and wear a patient gown with the opening in the back. A technologist trained in performing this exam will be conducting the test, and will explain everything he or she is going to do. You will be asked to lie on a stretcher, turn to your left side, and bend your knees. An electrode pad (similar to an EKG pad) will be placed on your buttock or thigh. The technician will then put on a rubber glove with an electrode on the index finger. After lubricating his index finger, he will gently insert it into your rectum. This should be no more uncomfortable for you than a rectal exam. The technologist will then send a mild, painless electrical stimulus through the electrode on his finger to your pudendal nerve. This stimulation may cause the muscles of your thigh to twitch involuntarily, but it will be painless. The technologist will then gently rotate his finger to repeat the test on the opposite branch of the nerve. A computer will record the response of your pudendal nerve to the stimulation. A physician will interpret the results and determine if any nerve conduction delays exist. The actual procedure will take 15-20 minutes.
Pudendal neuralgia: CT guided pudendal nerve block technique - This highly technical 1999 article describes the anatomy involved and how to perform nerve blocks. As the article says, "Infiltrations are made first at the ischial spine. If two consecutive nerve blocks into the ischial spine fail, a third injection can be made into the pudendal canal.
The EMG - Which One and Why
Eric DeBisschop - Eric Bautrant
This is a publication looks at the differences between the some of the more commonly used nerve testing. They look at "staged" sacral reflexes vs the Pudendal Nerve Motor Latency test. Many factors can interfere with nerve testing results. Examine with these doctors the pros and cons of using these tests.
13.
Where is the pudendal nerve and what does it look like?
By far the best anatomical images I could find are the
Female
Pudendal Nerve or Male
Pudendal Nerve. Study these images. Note the way the
nerve branches out and covers a wide area. Is your pain
located anywhere on the nerves shown? If so, and it gets
worse with normal sitting and better sitting on a toilet
seat, and there is no apparent reason for the pain,
I'll stick my layman's neck out and venture that you probably
have PNE.
Note how prominently the nerves stand out on the Ischial
Spine. This is why prolonged sitting (especially heavy cycling)
so frequently causes PNE. As Dr. Robert writes in his article,
the pudendal nerve "describes a curve which drags it
around the region of the ischial spine, which it straddles
like a violin string on its bridge."
Print the male or female image in normal or best mode,
and in color. Circle the areas where your pain is. Now,
what nerves are in those areas? Discuss this image with
your doctor.
Dr. Ken Renney showed me two excellent images (from a different
perspective than the above images) in two different books
when I visited him in Houston in March of 2002. However,
I don't have those medical reference books. When you visit
your doctor, ask to see and discuss additional images of
the pudendal nerve. As I found with Ken, images help greatly
in discussing symptoms, causes, and cures. A good doc will
have them.
What
does the pudendal nerve look like? The image on the right
is Figure 11 from PNE
by Dr. Robert. This photograph was taken after the surgical
procedure that frees the pudendal nerve from entrapment
by incisions on the sacrotuberal and sacrospinal ligaments,
as discussed in the article.
An interesting image of the cutaneous nerve is at Gluteal
Region. This is especially useful for those who do not
have the classic PNE symptoms, but have sitting related
pain in the ischial area and between the two ischial tuberosities.
14.
Why does it take so long to feel better after surgery?
Patients are advised that it will be at least two weeks
before they can return to work. This is just the surgery
recovery period. For the pudendal nerve to return to it
original normal pain free condition usually takes much
longer, generally several months to a year. However, some
patients have felt huge reductions in pain as soon as
they woke up after the operation. I spoke to one at the
hospital in Nantes the day after his surgery. He was all
smiles and reported "the pain was gone." All
that was left was the pain from the operation itself,
which he described as feeling "like someone kicked
me in the butt."
Dr. Robert advises that a final assessment of the outcome
of the surgery cannot be made until one year afterwards.
He cautions that you should expect no improvement for
the first three months and that most improvement occurs
in the 3 to 12 months following surgery. As ChrisR
explained:
"There are several reasons the nerve takes so
long to get rid of the painful sensations:
"1. It takes a while to decrease the inflammation
from the surgery.
"2. The damaged nerve has A LOT more receptors
than a normal nerve making it A LOT more sensitive meaning
it will conduct an impulse at a lower threshold. (hyperalgesia/allodynia)
It takes a long time for these receptors to be down
regulated. Taking 25mg of Elavil before going to bed
every night is thought to block some receptors and speed
up the process. I think it helps quite a bit. It can
cause some constipation, though, so use some citrucel,
etc if you use Elavil.
"3. The pain has been there a long time and the
pathway is 'grooved' --- it is called central nervous
system plasticity. This is also thought to be helped
some by low doses of Elavil. But most importantly, it
takes A LOT of time."
