Trying Again

[Karyn]

Hermajesty,
I don't blame you in the least for your biased opinion. If it were me, I'd more than likely feel the same way. You also have an advantage over us by actually being "behind the scenes" in the PT Profession. However, the majority of us don't have your experience or resources in that area. You're also very lucky to have found "a well connected PF person." In my neck of the woods, ANYONE who has gone for a basic PFPT course and recieved a certificate is considered by the Medical Community as a SPECIALIST in Pelvic Floor Disorders. I found out the hard way how very, very untrue that is. I found it even more difficult to convince aforesaid medical community of such. I'm not completely nixing PT forever and ever. I agree with you 100% that it's a profession to watch. I also agree that they are following literature and continuing ed. My positive side finds this very encouraging and exciting. My skeptical side is a little more cautious. Following lit and participating in continuing ed may not be such a good, too. Take for example my PT, who after attending a "Resetting the pain cylce in Chronic Pain Patients", now lumps me in with ANYONE who has chronic pain. Doesn't matter if it's migranes, pelvic pain or arthritis! This particular course she attended "taught" ALL pain is the same, regardless of the source. Who knows what she'll learn next?!?!? OK, I'm off track here ... sorry!
I am very excited about your upcoming Congress and sincerely do have hopes that Jerry Hesch techniques becomes more widely known and available in more areas. It sounds like he's (OK, you're) taking steps to make that happen!
Warmest of regards,
Karyn

[Celeste]

1ST PRACTIONER WHO NOTICED MY OBVIOUS, GROSS POSTURE DEFORMITIES, AND while what she could do for me herself was limited, she hooked me up with Hesch, with the marvellous PA who manages my case (meds, testing, etc), and has basically been responsible for getting me to all the right people at all the right times for care as she is THE well-connected pelvic floor person in town. Without her I think I would have given up hopping from ignorant Doc to ignorant Doc by now...don't know where I would be.
Also while these pelvic floor PT's are so far limited in what they can do for PN, they are the ones who are following the literature and continuing ed and will be the 1st to know what new biomechanical PN care is out there. MY pelvic floor PT could not help my underlying S-I problem, but after this weekend she will be able to help a lot more patients like me because she is hosting a Hesch Seminar at her facility and is going to get 16 hours of training in correcting pelvic joint dysfunction. I think it is a profession to watch, not dump on.

With all due respect, this is separate from PNE. I don't think anybody here was "dumping" on Hesch or your results in correcting your posture problems. If you don't want people lumping it in with the useless modalities prescribed to PNE patients, that's fine. By the same token, you can't lump them together either and accept the criticism of Weiss and Prendergast, for Hesch.

[HerMajesty]

The issue to me is, as we all know there are very few Docs, widely scattered geographically, and with long waiting lists, that have any authoritative knowledge about PNE. Let's say that HOPE decided that PT was not a useful modality for PN, and removed the "find a PT" section from the Board. That would leave most patients with NOBODY in their local area as a resource for ANY education, resource location, or other services in regard to pelvic pain syndromes.
The Pelvic Floor PT community is surely imperfect, but they are an accessible local resource. Without them I think most of us would be out there LOST like I was...do you remember the 1st person who believed you had a problem and explained what it might be, and was willing to try stuff to fix you, instead of looking at you like you had two heads? Some PN can be greatly helped by hands-on, biomechanical modalities, and most MD's will not even consider practicing hands-on. Any innovation in this area is going to be in the PT community. I see changes coming down the road...here is something being presented by Colleen Fitzgerald, who is a very respected name in Pelvic floor PT, next week at the Interdisciplinary World Congress on Low Back and Pelvic Pain:

"Pelvic Girdle Pain: Diagnostics, Risk Factors and Motor Control
Colleen Fitzgerald and Britt Stuge
This session will focus on diagnostics, risk factors and motor control in patients with pelvic girdle pain (PGP). PGP is a global problem affecting many people worldwide and is speculated in many cases to be a differential diagnosis of LBP. The diagnostic criteria and source of pain is debated, and no gold standard for examination exists. There is, however, evidence for different sub-groups of PGP.
Altered motor control patterns could potentially create a mechanism for PGP by abnormally loading pain sensitive pelvic structures. Motor control patterns in subjects with PGP have been examined in recent studies and patterns of bracing through the abdominal wall and the chest wall have been associated with increased intra-abdominal pressure and depression of the pelvic floor. The anatomy and the function of the pelvic floor muscles are complex and there is a need to study the role of the pelvis floor in PGP.
An understanding of the pathogenesis is necessary when designing and studying treatment programs. Of importance is also an understanding of risk factors associated with PGP. Several risk factors for PGP have been suggested but so far the evidence has been weak. New studies have however examined potential risk factors such as clinical, hormonal and psychosocial aspects."

As Pelvic Floor PT's start to realize as a group that they need to expand their practice into treating the pelvic girdle, I think the success rate for PN patients in PT will go up. Meanwhile, for those of us who have bladder as well as neuropathy symptoms, I think Pelvic Floor PT even as practiced in a non-innovative, standard, soft tissue only sense, can be very helpful. My "end stage" of PN, in the summer of '09, after I had developed all the neuropathies, is that my bladder began to spasm wildly and I could not drive a half hour without stopping at 4 gas station bathrooms. My kids' school is a half hour drive, so if I had not had your basic, belly and thighs trigger point work done over the summer, September would have been a nightmare. The PT did not fix me but it allowed me to make it to the school, so long as I ran to their bathroom the second I got there. That was IMPORTANT. That is why I continue to tell newcomers with PN to check out their local Pelvic Floor PT 1st. Skill level, modalities used, and smarts vary tremendously within the profession. But it is worth a try...Waaaay off topic now because I agree with you Celeste, KC17 is wasting time and money, and maybe being injured in the process.

[ezer]

I followed what Dr.Weiss recommended for my PNE problem which was to do pelvic floor physical therapy. I had access to the best pelvic floor PTs in the San Francisco area (Stephanie, Laura, Tim etc...). They all thought they could help me but it made no difference.
I also tried Rolfing and I saw 2 different practitioners. Again, that made no difference.
Sure it is purely anecdotal but it seems that my experience is far from unusual.

[Celeste]

The issue to me is, as we all know there are very few Docs, widely scattered geographically, and with long waiting lists, that have any authoritative knowledge about PNE.

Let's say that HOPE decided that PT was not a useful modality for PN, and removed the "find a PT" section from the Board. That would leave most patients with NOBODY in their local area as a resource for ANY education, resource location, or other services in regard to pelvic pain syndromes.

Some PN can be greatly helped by hands-on, biomechanical modalities, and most MD's will not even consider practicing hands-on. Any innovation in this area is going to be in the PT community.

Only one of the PNE doctors has a long waiting list, to be fair. The others can all see patients in a very reasonable amount of time.

HOPE has never come out and said they want to decide PT is not useful; if nothing else, it's known to be a requirement to be seen by some of the PNE doctors in order to rule out easily fixed problems. It's worth a try so you can cross it off the list and move on to something that might work to fix the problem.

I beg to differ with the idea that the "find a PT" section on the board is the only way these PT providers can be found, though. There are lots of internet avenues that have it, even if this forum took it away, which they aren't going to.

Frankly I don't think MD's SHOULD be doing PT any more than PT's should be doing surgery. I quite disagree with the idea that some PN can be helped by PN because it seems to be a temporary pain management fix from what gets reported here; nobody has ever gone to a treatment and come away cured. It's the ongoing nature of the treatment (and the ongoing promise of hope of pain relief for unlimited spending) that people here are concerned about. I'm so glad it helped your bladder spasms, but that's not the same as intractable PN pain.

[HerMajesty]

nobody has ever gone to a treatment and come away cured. It's the ongoing nature of the treatment (and the ongoing promise of hope of pain relief for unlimited spending) that people here are concerned about. I'm so glad it helped your bladder spasms, but that's not the same as intractable PN pain.

I started this line of discussion by pointing out that there are many modalities of PT. I believe some are very promising for PN pain, although pelvic floor soft tissue work is not. I think the pelvic floor PT's are gradually realizing this and picking up on new modalities of care to add to their bag of tricks - as a group that is, some of course are more cutting edge than others.

I strongly believe that I would have been CURED by the Hesch Method Manual Therapy if it had been done 25 years ago when the original pelvic injury occurred; or maybe even 6 years ago when the additional chilbirth injury to the pelvis occurred. This is BRIEF treeatment and I got my results in 2 office visits and had a single follow-up making 3 visits total. Instead of immediate correction, I walked around with a skewed pelvis for 25 years and I am left with large tarlov cysts which I am convinced is secondary damage. The correction of the pelvis did reduce my intractable PN by >50% and moved me from disabled to fully functional.
My son inherited my predisposition to pelvic injury but had only mild intermittant pelvic floor symptoms from age 8 until age 12 when his pelvis was corrected. His symptoms are 100% gone.
So Celeste I do believe that with TIMELY attention, that sub-population of PN patients who have PN secondary to joint injury, as opposed to scar tissue entrapment, etc, can indeed be CURED by hands-on work. Of course I am speculating...within a few years I aim to get together some research funding and prove it. In the meantime there is no point arguing back and forth about it, because I freely admit that without solid data it is speculation on my part. But logically, different structures within the pelvis have potential to put pressure and / or traction on the pudendal nerve, and while some like scar tissue are not going anywhere without a scalpel, others CAN be manipulated to free the nerve - why not?

[Celeste]

You can believe anything you desire, HerMajesty, but it doesn't make PT a proven modality for PN pain. It's something to try just in case before moving on, but no more than that.

Obviously it will take a lot to prove what you already believe, and it's not easy to get a study done and accepted in a peer-reviewed journal. That's why there's so little on PN/PNE in the literature. If you can work to get something in, that's great. Until then, I don't think we can say it's proven to be of use for stopping pain.

I'm glad Hesch helped you with your posture pain issues and I think it's great that you found employment with him, but it's really separate from pudendal neuropathy and entrapment. PT isn't going to change either one of nerve those conditions.

[HerMajesty]

It's something to try just in case before moving on, but no more than that.

My point was that traditional PT, like meds, something that can SUSTAIN somebody until they move on - it gave me the ability to drive my kids to school and grocery shop til I got other treatment. That is very significant because the goal is not just to find a cure but also to sustain quality of life in the interim while one is seeking a cure. My kids needed to be educated and fed in the 5 months it took me to find a more permanant solution.

Obviously it will take a lot to prove what you already believe, and it's not easy to get a study done and accepted in a peer-reviewed journal. That's why there's so little on PN/PNE in the literature. If you can work to get something in, that's great. Until then, I don't think we can say it's proven to be of use for stopping pain.

Yes Mr. Hesch has been published in several formats but mostly case studies; a few minor controlled studies were done by other PT's on his work; but a substantial controlled study takes a large research grant and we are in the process of finishing the IRS nonprofit papaerwork, to make that a possibility. Grant money is the issue - there has not really been an issue in the past with getting Hesch stuff published, it is generally accepted.

I'm glad Hesch helped you with your posture pain issues and I think it's great that you found employment with him, but it's really separate from pudendal neuropathy and entrapment. PT isn't going to change either one of nerve those conditions.

You seem to be a little confused about my health issues Celeste - I had no "posture pain" - in fact I had no clue about my joint abnormalities because I unconsciously compensated for them by standing with one hip stuck way out and had zero musculoskeletal pain. What I had, and now have to a lesser degree, is PUDENDAL NEUROPTHY - that is why I am here on this board - because I have neuropathies in the anal and pubic areas. I also eventually went on to develop neurogenic bladder which is PUDENDAL in nature. This was due to traction and pressure on the nerve from the skewed pelvic joints. Having this corrected took the pressure off the nerve. I went from a pain scale 5-7 with an average of 6, on meds, to a pain scale 1-5 with an average of 2 to 3, on meds. Bladder issue is 100% resolved in terms of symptoms, although I am prone to bladder infection due to painless residual urine after a void. I hope this clarifies.

[Celeste]

Yeah, I don't think I'm misunderstanding your postural problems when you call them "gross postural deformities" and "skewed pelvis". Regarding what "sustains" a person, that is pain management pure and simple--stop and the benefit ends, just like a pill. Lots of people have a combined musculosketal problem and either neuropathy, nerve damage, or nerve entrapment. PT allows people to "chip away" at collective pain from another angle, but it's pain management, not a cure.

[HerMajesty]

Surgery is a cure for a small minority of individuals. So far Celeste you are the only individual I have run into, who has been cured by surgery. The general statement made about surgical results is: post-surgery, 1/3 are worse, 1/3 are the same, and 1/3 improve. Of those that improve, a minority have a 100% improvement. You are rare indeed. So, the VAST majority of us do have to work within the confines of a chronic condition and learn to manage it for the highest possible quality of life. This is reality. "treatments" are quite valuable in this context, as "cure" is generally the holy grail. I would like to achive a cure but this may or may not be possible for me. In the interim, I am grateful to have regained an excellent quality of life.