Nerves the Cause of the Problem

[webslave]

Here they are, ladies and gents! The nerves at the root of our problems ... look for the PUD (pudendal) nerve. That's a big culprit. But notice how close it runs to nerves that innervate the prostate and bladder. It "talks" to them (cross talk). Then see that bundle of nerves in the inferior hypogastric plexus IHP? Notice how they innervate all the problem regions.

[dayne1234]

I've been tested for these over and over and finally many well known docs said that was not the cause of my problem. I even had the painful PNMLT in Houston (the same one they do in France), and my pudendal scores were average or less. Dr. Weiss in CA also checked the nerve and he said that his belief is that it is not the cause.

Just an FYI. I don't want people to think that the pudendal nerve IS the only cause of PFD.

Dayne

[webslave]

I actually mentioned that the other nerves are important in this too.

Also important is diet. Once nerves have damaged the tissues in the pelvis, stripping the epithelium and proliferating mast cells, you can be seriously affected by seemingly innocuous foods and drinks (in some men).

Anyway, here's another apposite study:

Lakartidningen. 2003 Apr 30;100(18):1618-9, 1622-4.

Sensory sensitization, part II: Pathophysiology in dysfunctional disorders. Understanding the inner life of the nerve pathways may explain hitherto unexplainable symptoms

[Article in Swedish]

Levander H., Reumatologkliniken, medicindivisionen, Akademiska sjukhuset, Uppsala. [email protected]

This article is based on a vast clinical experience from patients presenting with widespread pain syndromes as well as dysfunctional symptoms from inner organs. A literature survey has been performed. Allodynia and hyperalgesia that partly explain the fibromyalgia and local myalgia syndromes seem to arise from a pathophysiological process of nociceptive sensitisation. It is proposed that the concept of "sensory sensitisation dysfunctional disorders" be applied to conditions like bronchial hyperreactivity, Da Costas syndrome, Dercum's disease (Adipositas dolorosa), dry eyes and mouth syndrome, fibromyalgia, gastralgia, globus hystericus, interstitial cystitis, chronic prostatitis, irritable bowel syndrome, photo- and phonosensitivity, rhinitis, tension headache, tinnitus, vestibulitis syndrome. These dysfunctional disorders cannot be satisfactorily explained by presently known pathophysiological models like ongoing inflammatory process, tissue degeneration, fibrosis, blood vessel diseases, tumours, immune reactions, toxic or deficiency conditions, metabolic disturbances. Neurogenic mechanisms also seem to play an important role in the pathophysiology of arthritic conditions, and might be worthwhile to include in forthcoming discussions concerning the aetiology of chronic inflammatory disease.

Publication Types:

* Review
* Review, Tutorial

PMID: 12789809 [PubMed - indexed for MEDLINE]

[Andypan]

OK, so excuse my medical ignorance, but isn't it nerves that makes us feel pain? I mean, even if we have an injury, a muscle sprain for example, would we feel the pain if there were no nerves near the sprain?

Webslave, the diagram you present is very interesting to me. The lower 2/3 of the Pudendal nerve is where I have almost all of my severe pain (perineum & penis).

So, if we have cronic pelvic pain with muscle dysfunction, do the muscle spasms/dysfunction cause the nerves to misfire, or does a defect/irregularity in the nerve cause the muscles to spasm Or both

[akia]

Interesting. Very very interesting. I've always wondered how the nerves were laid out in the region.

I could see how this could cause some effects of the CP/CPPS conditions.

[MS]

Very informative diagram. Does this suggest that nerve damage/inflammation aggravates the surrounding pelvic floor muscles?

Or does constant muscle spasms/tightness impinge or damage nerves?

Or is it a chicken-or-the egg phenomenon?

Also, all my penile pain is left-sided, along the end of the Pudendal Nerve. I notice that it attaches to S2-S4, but I have herniations at L4-L5/L5-S1. Is there a connection

dayne1234: Do you have any lumbosacral problems along with your symptoms??

[GregT]

MS, the way that Dr. Robert (Nantes, France, inventor or PNE surgery) describes PNE as it affects muscles is as follows:

Nerves innervate muscles. When nerves become entrapped, and finally damaged, they start to send the surrounding muscles (pelvic floor) into spasm. He says "you fix the nerves and the muscles will, in time, be fixed as well". Well, that may happen for some, but I'm still suffering from PFD. I'm really not sure how much my nerve is still causing me problems. I had the surgery for pudendal nerve entrapment in Dec, 2001 and I was definitely found to have PNE, on both sides, and a huge compression at the alcock's canal. This is also the place where my PT can produce the worst "nerve-like" pain.

My next step is to try Botox injections with Dr. Sheldon Jordan in Santa Monica. He is also going to give me a pudendal nerve injection at this place around left side alcock's canal, and on the next day, give the Botox into various pelvic floor muscles, based on his findings along with my PTs suggestions. I would be interested to see if anyone else has had any experiences with Botox and pelvic floor muscles. Thanks. Greg

[webslave]

Greg, we shall follow your case with interest. Keep us informed -- thanks!

[MS]

GregT,

You have posted some very helpful information.

It sounds like our treatments are the same, but opposite. I have had great success with Botox injections to the pelvic floor muscles (noticeble reduction in spasms), and I am soon to have a pudendal nerve injection. My neurologist is planning on referring me to a specialist who will use Dr. Antolak's CT-Guided technique:

Chronic perineal pain caused by pudendal nerve entrapment: anatomy and CT-guided perineural injection technique.

Hough DM, Wittenberg KH, Pawlina W, Maus TP, King BF, Vrtiska TJ, Supplierell MA, Antolak SJ Jr.

AJR Am J Roentgenol. 2003 Aug;181(2):561-7.

Department of Radiology, Mayo Clinic, 200 First St. S.W., Rochester, MN 55905, USA.

Have you had a PNLT? Please keep us posted on the nerve injection. (I am very anxious about a pudendal nerve injection).

[GregT]

MS, it sounds like you're already booked with Antolak, but you may want to reconsider. The Houston group of doctors have now performed about 74 of these surgeries, and they do the pnmlt test (as taught to them by Dr. Labat in Nantes, France), and they have experienced doctors giving the injection. Dr. Antolak's clinic is practically brand new, meaning his anesthioloigists may be new at this. Also, they don't offer a pnmlt, or at least I know he didn't when he worked at the Mayo clinic. Also, I believe that Antolak has now performed 1 surgery. He is a urologist who is and will start performing surgery on a nerve. This surgery should be done by a neurosurgeon (which Dr. Ansell is). Dr. Antolak does have a lot of experience dealing with PNE patients, but now that he's no longer at the Mayo clinic, everything is new (surgeon, the person giving you injections, and still no one giving a pnmlt).

Just to give you a little history, Dr. Renney (Houston) had pne and about 3-4 years ago Dr. Antolak went over to France with Renney when Renney had the surgery. I imagine that Antolak observed the surgery then. Meanwhile, shortly after coming back to the states (maybe in early 2001 or perhaps a bit sooner), Antolak began his pne program at the Mayo clinic. Back in Houston, Dr. Renney was struggling with his recovery. After about 2 years, he finally was well enough to know that the surgery helped him, and he was able to start a team of his own to treat people with PNE. By this time, Dr. Spinner, a neurosurgeon at the Mayo clinic was already performing the PNE surgery at Mayo. The Houston doctors had begun to see patients in early 2002, but in May of 2002 they all went to France to train with the French doctors (Robert, the neurosurgeon, Bensignor, the anesthesiologist (does the blocks), and Labat, the neurologist (does the pnmlt). Meanwhile, the word at the Mayo clinic was that the neurosurgeon didn't feel too comfortable doing the surgeries, or better put, didn't want to become "the butt doctor". Apparently, he was pretty stringent about who he did the surgeries on. Since they didn't perform the pnmlt test there, all they had to go on was the block results (whether or not the patient had significant relief) and the patient's symptoms, and they pretty much required you to meet both of these criteria. Well, for many people, depending on their type of entrapment or perhaps depending on the number of years with this condition, they won't receive a positive experience from the blocks (injections), so these were given a series of 4 injections (3 at the ischial spine, and a final one at alcock's canal). When the results weren't very positive, the patient was just kind of ignored, or pushed away, or possibly told to go to France, which wasn't so easy back then. In March of this year (2003), Dr. Spinner performed his final PNE surgery. It was his 23rd.

Meanwhile, the Houston team performed the surgery based on more lenient criteria. Since they performed the pnmlt, they had 3 different methods of deciding if a patient had pne; the symptoms, the pnmlt test, and the block results. Also, they followed the French protocol of only doing 2 blocks at the ischial spine, and then one into alcock's canal. If they felt that you had PNE, then you are offered the surgery. They are having very good results, some better than others. The most important thing is that they are, indeed, finding people who do have PNE. It can really only be confirmed (whether or not you have pne) when performing the surgery. One can have nerve damage, but not be particularly entrapped. The most common place that the nerve is entrapped is between the ligaments (sacrospinous and sacrotuberous), while the other more common place is alcock's canal.

I am 2 years removed from my surgery now, and I've been primarily sitting at work for about 6 months now. Pain with sitting was my primary symptom for my first 4 years of this pain. After 4 years began the muscle problems. Now, my problems are mostly muscular in nature, as my PT can attest to. I'm hoping that the Botox injections can be the final solution to my long journey.

I know that there are some of you on this site who may know me, and I want to set one thing straight. I realize that there are different "things" that can cause pain in the butt or genital area, and I'm not here to tell all of you that you're on the wrong track. What I am here to tell you is that if many of the symptoms fit (for pne), this diagnostic possibility should also be checked into, or ruled out. I firmly think that Houston is the best place to go, with Indianapolis (Dr. Benson) being my second choice (because he also does the surgery and all parts of the diagnosing). Finally, Dr. Jordan is a neurologist in Santa Monica who is very knowledgeable about PNE, and has ample experience at performing Botox injections into all sorts of muscles. He is very accurate with what he does.

MS, can you tell me a little bit more about your Botox injections? What muscles were injected, how did they know which ones to inject, and how long did the positive effect last? I don't think that you really had a solid chance of complete, long-lasting recovery if your pudendal nerve was still entrapped. An entrapped and possibly damaged PN will continue to send the muscles back into spasm, although I could see how the Botox could slow that process down. Everyone, I'm sorry for the length of this post, but appreciative of the opportunity to talk about PNE. Greg

[webslave]

Before going to pudendal.info, read
viewtopic.php?t=1506

[MS]

MS, it sounds like you're already booked with Antolak, but you may want to reconsider.

Thanks for the post, Greg. It was very informative. I am not having the pudendal nerve block after all. My neurologist clarified with me during my last visit (Tuesday) that he read the article and thought that it might be a potential treatment option, if all else fails. He has consulted with several other neuros, and sent me to a peripheral nerve specialist and anesthesiologist, both of whom agreed that the PN block was not the recommended treatment for me at this time.

Although the distribution of left-sided penile pain suggests a possible PNE, I do not have other common symptoms (e.g pain while sitting, relieved by standing, etc.). The neuro said that a PNLT would not be of diagnostic significance right now either.

My neuro wants to continue the Botox injections, and initiate some epidural (steroid) injections into the L4-L5/L5-S1 nerve routes for the disc herniations, which he believes may be referring myofascial pain to my already tense pelvic floor. I am also continuing PT and have started Trileptal (I can't tolerate Neurontin), which seems to help somewhat.

MS, can you tell me a little bit more about your Botox injections? What muscles were injected, how did they know which ones to inject, and how long did the positive effect last?

The procedure for the Botox injections was complicated. My symptoms were/are left-sided lower-back, pelvic floor, penile, inner thigh pain and spasm. The doctor immediately diagnosed the following muscles as being taut with myofascial pain: (all on left-side) L5 paraspinal, multifidi, quadratus lumborum, psoas, and adductors; then the obturator internus and levator ani by digital exam. His PT performed EMG biofeedback which showed increased tension of the levator (again on the left side).

The PT performed "dry needling" on several of the muscles, which led to temporary (1 day), tolerable relief of pain and spasm. The doctor then injected all the muscles, along with the gracilis and pectineus with Procaine on three occasions as a "trial," before the Botox to see if there would be any adverse reactions (e.g. loss of sphincter control, etc.) The series of Procaine injections also had favorable results, so he proceeded to Botox.

The Botox was injected by the same procedure as the Procaine injections. There were no side effects for me, other then soreness at the injection points. The most uncomfortable injection is the levator, which is injected from the outside, but digitally guided.

The Botox significantly reduced pain and spasm in the back and inner thigh muscles for about four months. I still have pretty bad pelvic floor spasms and left-sided penile pain.

Greg, feel free to contact me offline if you want to "compare notes."

Matt
[email protected]