PTs seem to be unaware

Many physical activites such as sports, pelvic surgery, etc can all contribute to PN
kat
Posts: 203
Joined: Fri Sep 17, 2010 3:44 pm

PTs seem to be unaware

Post by kat »

Please let me know if you know about this concern we are noticing at PT conventions in Missouri.

There are MANY PTs that say they are (pelvic floor specialists)

When asked if they check the 5 joints in their people they say (No, How do I do that?)

How are PTs not aware of this?
How can we make it a part of their training?
When these are off it causes burning, tingling and itching and seems to be a warning of PN.
What can we do?

Help. We have PTs that are harming their people by not knowing how to properly align them.

Loves
Born with pudendal and obtorator neuralgia. 32 years of being misdiagnosed.
Surgery with Conway 7/14/10. Internal burning cured!
Currently in PT for many pelvic floor issues due to having PN for so long.
pianogal
Posts: 437
Joined: Mon Sep 20, 2010 2:11 am
Location: Orange County, CA

Re: PTs seem to be unaware

Post by pianogal »

what 5 joints are you referring to? are you referring to the lowest part of the spine? I'm curious. :)
-straddle fall age 4-7 w/bleeding labia, tampons hurt in teens, papsmere started annoying pelvic 'tingling' & pne in 02
-obturator surgery w/ Filler in 05 (useless, created sciatic & plantar fascitis pain)
-TIR surgery w/ Bautrant in 08 and vestibulectomy in 08 in France (vest. removed pain w/intercourse, pain w/sitting increased post surgery)
-chronic fatigue & food allergies/migraines (gluten, milk) from pain meds in 08
-want a life back. I'm 34 w/8+ years of pain
kat
Posts: 203
Joined: Fri Sep 17, 2010 3:44 pm

Re: PTs seem to be unaware

Post by kat »

I'm not a PT, but here is my understanding of it.

1 is in the pubic bone (the front of my pubic bone burns, goes numb or tingles when it's off)
2 - 3 in each hip (mine tilt funny causing burning and or numbness in my thigh)
4 - 5 at the base of the spine (mine causes pain with sitting and numbness in my back)

None of these were dealt with until after surgery.
I go out of alignment due to weakness and so water therapy is starting to strengthen me to hold them correctly
I'm just wondering if being out of alignment could be causing burning and numbness in others like it did with me.

I want others to be helped before they are so bad that they need surgery.
Born with pudendal and obtorator neuralgia. 32 years of being misdiagnosed.
Surgery with Conway 7/14/10. Internal burning cured!
Currently in PT for many pelvic floor issues due to having PN for so long.
HerMajesty
Posts: 1134
Joined: Sat Sep 18, 2010 12:41 am
Location: North Las Vegas, Nevada

Re: PTs seem to be unaware

Post by HerMajesty »

Kat,
PT training at Universities must be "evidence based" - that is they teach what has been thoroughly researched in controlled studies and proven ONLY.
Problem is, the cutting edge, new stuff that is out there, especially in the area of pelvic pain syndromes, has been presented at conferences, published in case studies, taught in continuing ed courses, and practiced with positive outcomes; but is NOT yet picked apart enough in controlled studies to be considered "evidence based". This takes much time and money. Some of the manual skills taught in DPT programs are 60 years old, literally (Osteopathic Muscle Energy Model).
So fact is, there are 2 extreme kinds of PT's and lots in the middle: One extreme is the kind that is satified with what they learned in school and do the bare minimum continuing ed to keep their license, and at the other extreme are those that are keeping up with all the published literature, networking, doing lots of specialized training and getting certified in various techniques, trying innovative stuff, and conducting research.
I was recently involved in starting a nonprofit with a goal of making a particular method of PT into an "evidence based" modality - this is a lofty goal and will be an extremely difficult one to achieve. Meanwhile the method can still be disseminated through presentations, seminars, publications to those PT's who are interested. But what they learn in PT school is only going to ever change gradually as the research catches up with some of the techniques being used. There is VERY, VERY little out there in terms of controlled PT studies on modalities which deal with pelvic pain, and this is due to logistical and funding issues. By the time the best stuff they have now is being taught in PT school, there will be better stuff out there again, which is not yet being taught. So it goes.
pelvic pain started 1985 age 14 interstitial cystitis. Refused medical care from age 17, did GREAT with self care for years.
2004 PN started gradually, disabled by 2009. Underlying cause SIJD & Tarlov cysts
improved with PT & meds: neurontin, valium, nortriptyline, propanolol. (off nortriptyline & propanolol now, yay!)
Tarlov cyst surgery with Dr. Frank Feigenbaum March 20, 2012.
Results have been excellent so far; but I won't know my final functional level for a couple of years.
HerMajesty
Posts: 1134
Joined: Sat Sep 18, 2010 12:41 am
Location: North Las Vegas, Nevada

Re: PTs seem to be unaware

Post by HerMajesty »

BTW the 5 joints involved in the pelvis are 1 symphysis pubis, 2 sacroiliac joints, and 2 hip joints
pelvic pain started 1985 age 14 interstitial cystitis. Refused medical care from age 17, did GREAT with self care for years.
2004 PN started gradually, disabled by 2009. Underlying cause SIJD & Tarlov cysts
improved with PT & meds: neurontin, valium, nortriptyline, propanolol. (off nortriptyline & propanolol now, yay!)
Tarlov cyst surgery with Dr. Frank Feigenbaum March 20, 2012.
Results have been excellent so far; but I won't know my final functional level for a couple of years.
pianogal
Posts: 437
Joined: Mon Sep 20, 2010 2:11 am
Location: Orange County, CA

Re: PTs seem to be unaware

Post by pianogal »

This is what my husband who is a Physical Therapist says: "I'm not aware of any term "the five joints" and use of this term may be confusing other physical therapists, but it sounds like the joints you are describing are the pubic symphisis, the sacroiliac joints, and either the hip joints or the lumbosacral junction L5/S1 and any good physical therapist can check the function of these joints, but may be confused by the way you were asking about them."
-straddle fall age 4-7 w/bleeding labia, tampons hurt in teens, papsmere started annoying pelvic 'tingling' & pne in 02
-obturator surgery w/ Filler in 05 (useless, created sciatic & plantar fascitis pain)
-TIR surgery w/ Bautrant in 08 and vestibulectomy in 08 in France (vest. removed pain w/intercourse, pain w/sitting increased post surgery)
-chronic fatigue & food allergies/migraines (gluten, milk) from pain meds in 08
-want a life back. I'm 34 w/8+ years of pain
HerMajesty
Posts: 1134
Joined: Sat Sep 18, 2010 12:41 am
Location: North Las Vegas, Nevada

Re: PTs seem to be unaware

Post by HerMajesty »

pianogal wrote: any good physical therapist can check the function of these joints, but may be confused by the way you were asking about them."
I was thinking this myself; the explanation I gave above was a general commentary on where PT knowledge is at right now; but yes indeed any PT knows their joints, that is definitely standard PT knowledge, I think Kat it might be the way you are phrasing the question.
pelvic pain started 1985 age 14 interstitial cystitis. Refused medical care from age 17, did GREAT with self care for years.
2004 PN started gradually, disabled by 2009. Underlying cause SIJD & Tarlov cysts
improved with PT & meds: neurontin, valium, nortriptyline, propanolol. (off nortriptyline & propanolol now, yay!)
Tarlov cyst surgery with Dr. Frank Feigenbaum March 20, 2012.
Results have been excellent so far; but I won't know my final functional level for a couple of years.
kat
Posts: 203
Joined: Fri Sep 17, 2010 3:44 pm

Re: PTs seem to be unaware

Post by kat »

I hope you are right.

I hope others have a better experience. I have explained the joints to the docs in different ways and you could be right and I will try to be more clear as I explain.
My concern is that when my PT goes to conferences and she asks what peoples' pelvic joints are doing in cases that they can't solve and they explain that they don't know how to check the 5 joints.

I pray that you are correct and that it is different in other states.
Born with pudendal and obtorator neuralgia. 32 years of being misdiagnosed.
Surgery with Conway 7/14/10. Internal burning cured!
Currently in PT for many pelvic floor issues due to having PN for so long.
kat
Posts: 203
Joined: Fri Sep 17, 2010 3:44 pm

Re: PTs seem to be unaware

Post by kat »

Hermajesty -

My question was, Can you check my pelvic joints?

This let to MRIs and such to be sure my hip bones were fine and that my legs were the same length.
Sometimes they would notice one hip would sit a little higher.

No one ever checked my pubic joint of the last 2 on my spine.

So, if this is common knowledge as you claim.

Why were they so unable to check 5 joints when it is a PTs specialty to know about them.

I'm glad you had a good experience, I'm trying to look out for those like me that are with PTs that claim to be pelvic floor specialists and really don't know what they are doing.
Born with pudendal and obtorator neuralgia. 32 years of being misdiagnosed.
Surgery with Conway 7/14/10. Internal burning cured!
Currently in PT for many pelvic floor issues due to having PN for so long.
Griff522
Posts: 314
Joined: Sun Oct 10, 2010 7:42 pm
Location: Michigan

Re: PTs seem to be unaware

Post by Griff522 »

So do I need ro fly to Las Vegas or Missouri in order to find a PT that knows what the hell they're doing? I'm truly frustrated since finding out yesterday that I shouldn't be putting my TENS electrodes on my spine like my Pelvic Pain Specialist PT told me to do. :x
Burning vulva pain began 10/09
Treated for SIJD 9/10 and burning stopped and pain localized to rt side
Surgery w/ Dr Dellon 5/11 - didn't help my pain
2012 - PT, massage therapy, and ART therapy from chiropractor
MRI showed labral tear and US of groin found hernias
2/13 - surgery for sports hernia
5/13 - still have obturator internus spasms
5/13 - appt with ortho spine dr
8/16/13 - Arthroscopic surgery to rt hip for FAI and torn labrum
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