Ezer,
I think we should add "visceral hypersensitivity" to the list.
That was one of my diagnosis's from Mass General in Boston. Turns out it was my ilioingual nerves! When I asked for clarification on what EXACTLY is visceral hypersensitivity, I was informed that it was a form of referred pain, with no identifyable cause.
And then, of course, I got the "here - have some more psych meds. Buh-bye."
Warm regards,
Karyn
Misdiagnosed Pelvic Disorders
Re: Misdiagnosed Pelvic Disorders
Ultra Sound in 03/08 showed severely retroverted, detaching uterus with mulitple fibroids and ovarian cysts.
Pressure and pain in lower abdomen and groin area was unspeakable and devastating.
Total lap hysterectomy in 06/08, but damage was already done.
EMG testing in NH in 04/10 - bilateral PN and Ilioinguals
3T MRI at HSS, NY in 09/10
Bilateral TG surgery with Dr. Conway on 03/29/11. Bilat ilioinguinal & iliohypogastric neurectomy 03/12. TCD surgery 04/14.
Pressure and pain in lower abdomen and groin area was unspeakable and devastating.
Total lap hysterectomy in 06/08, but damage was already done.
EMG testing in NH in 04/10 - bilateral PN and Ilioinguals
3T MRI at HSS, NY in 09/10
Bilateral TG surgery with Dr. Conway on 03/29/11. Bilat ilioinguinal & iliohypogastric neurectomy 03/12. TCD surgery 04/14.
Re: Misdiagnosed Pelvic Disorders
The list contains common "misdiagnosed" pelvic disorders...as the prefix 'mis' implies, the diagnosis is incorrect...real or otherwise. I listed common misdiagnosed or oversimplified conditions typical from allopathic medicine.ezer wrote: I see. So your list contains real and invented medical conditions.
That's fair. But he'd state that running may simply aggravate your condition. Personally, I'd ask him why and how he arrived at the diagnosis.ezer wrote: If a doctor diagnosed me with pelvic myoneuropathy I would run away.
In a reductionist allopathic model, conditions occur independently and in a singular fashion. In reality however, this is rarely the case.ezer wrote: I am a bit puzzled that [real and distinct] conditions like SIJD and chronic prostatitis could really be a different and single problem.
I'm puzzled as to the point of your argument?
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- Posts: 1134
- Joined: Sat Sep 18, 2010 12:41 am
- Location: North Las Vegas, Nevada
Re: Misdiagnosed Pelvic Disorders
Are you in fact a Doctor (MD or Osteopath), and what exactly is the treatment you offer?
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.
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.
Re: Misdiagnosed Pelvic Disorders
I am just a patient that has been taken for a ride multiple times in the beginning of this medical journey so allow me to be a bit skeptical.drkandrew wrote: In a reductionist allopathic model, conditions occur independently and in a singular fashion. In reality however, this is rarely the case.
I'm puzzled as to the point of your argument?
My point is that I don't see a connection between SIJD and prostatitis but it is not your view, so tell us more. I am really not trying to dismiss your theory so I welcome a more thorough and in depth explanation.
Using ESWT seems like an interesting approach. Does the effect last and I share Violet's concern about affecting negatively the pudendal nerve.
I noticed that my cheap handheld ultrasound always gives me great pain relief (increased blood flow around the nerve?) but the effect doesn't last and I tend to flare up a day later. ESWT being significantly more potent and assuming it is not affecting the nerve it sounds very intriguing.
2002 PN pain started following a fall on a wet marble floor
2004 Headache in the pelvis clinic. Diagnosed with PNE by Drs. Jerome Weiss, Stephen Mann, and Rodney Anderson
2004-2007 PT, Botox, diagnosed with PNE by Dr. Sheldon Jordan
2010 MRN and 3T MRI showing PNE. Diagnosed with PNE by Dr. Aaron Filler. 2 failed PNE surgeries.
2011-2012 Horrific PN pain.
2013 Experimented with various Mind-body modalities
3/2014 Significantly better
11/2014 Cured. No pain whatsoever since
2004 Headache in the pelvis clinic. Diagnosed with PNE by Drs. Jerome Weiss, Stephen Mann, and Rodney Anderson
2004-2007 PT, Botox, diagnosed with PNE by Dr. Sheldon Jordan
2010 MRN and 3T MRI showing PNE. Diagnosed with PNE by Dr. Aaron Filler. 2 failed PNE surgeries.
2011-2012 Horrific PN pain.
2013 Experimented with various Mind-body modalities
3/2014 Significantly better
11/2014 Cured. No pain whatsoever since
-
- Posts: 1134
- Joined: Sat Sep 18, 2010 12:41 am
- Location: North Las Vegas, Nevada
Re: Misdiagnosed Pelvic Disorders
Ezer, in response to your last post:
Connecting SIJD and prostatitis - I DO see the connection...not between SIJD and TRUE (bacterial) prostatitis, but a lot of men have chronic pelvic floor symptoms, multiple negative cultures of prostatic fluid, and are labelled "chronic prostatitis" based on symptoms, because the Docs cannot recognize the symptoms of male pelvic floor dysfunction. This ties into SIJD because pelvic joint dysfunction will create pelvic floor dysfunction by creating a drag on surrounding pelvic structures.
I had interstitial cystitis for the past 20 years due to SIJD, but of course in the 1980's they told me the IC was aitoimmune or something...there is research now in which they have caused hemorrhagic cystitis in rats, by creating spasm in the muscle at the base of the tail. This occurs through neural pathways, as demonstrated because it does not happen using the same protocol when the nerves of the bladder are cut prior.
So yes, I do see a connection. What I have not seen yet is anything but the most vague references to how you, drkandrew, have a cure-all for all these things. I understand you have a method to break up scar tissue - not all of us have scar tissue.
Personally, I was made 75% better by having my SIJD corrected by Jerry Hesch, MHS, PT http://www.heschmanualtherapy.com . Are you claiming to have the ability to correct SIJD as efficiently (mine took 2 visits) and permanently as Mr. Hesch can? Now, my remaining symptoms are most likely due to large S2 Tarlov cysts, whic I believe formed due to the pelvic pressures associated with 25 years of SIJD and PFD. There are a small number of Neurosurgeons in the country who deal with these, and while I am investigating the issue, I am not sure any of them can deal with mine at all, without subjecting me to unacceptable risk considering I have already attained a high level of function. So I would be highly skeptical if you claimed you could do anything for ME. Maybe you could do something for somebody with scarring in the alcock's canal. You need to make specific, reasonable claims to be believed - not vague referenced to all the different methods you use - and certainly you cannot claim to be able to fix all, or even the majority, or persons with PN.
I am sorry if this sounds rude but as ezer said, some of us have been taken for a ride a few times in the past and yes, we are skeptical with good reason. It is one thing to come out and say you have a new noninvasive modality to break up scar tissue in the alcock's canal, but please be specific and realistic about your other treatment modalities. And please let us know about the "Doctor" thing...MD? DO? DPT?...reason being, as you probably know there is a "Dr" David Wise out there who has a PHD, telling PN patients he can fix us if we spend $5,000 to attend his 6 day seminar where he teaches people to relax and stick their finger up their butt. So you are dealing with a skeptical audience. So I do not mean to attack you but just asking for clarification.
Connecting SIJD and prostatitis - I DO see the connection...not between SIJD and TRUE (bacterial) prostatitis, but a lot of men have chronic pelvic floor symptoms, multiple negative cultures of prostatic fluid, and are labelled "chronic prostatitis" based on symptoms, because the Docs cannot recognize the symptoms of male pelvic floor dysfunction. This ties into SIJD because pelvic joint dysfunction will create pelvic floor dysfunction by creating a drag on surrounding pelvic structures.
I had interstitial cystitis for the past 20 years due to SIJD, but of course in the 1980's they told me the IC was aitoimmune or something...there is research now in which they have caused hemorrhagic cystitis in rats, by creating spasm in the muscle at the base of the tail. This occurs through neural pathways, as demonstrated because it does not happen using the same protocol when the nerves of the bladder are cut prior.
So yes, I do see a connection. What I have not seen yet is anything but the most vague references to how you, drkandrew, have a cure-all for all these things. I understand you have a method to break up scar tissue - not all of us have scar tissue.
Personally, I was made 75% better by having my SIJD corrected by Jerry Hesch, MHS, PT http://www.heschmanualtherapy.com . Are you claiming to have the ability to correct SIJD as efficiently (mine took 2 visits) and permanently as Mr. Hesch can? Now, my remaining symptoms are most likely due to large S2 Tarlov cysts, whic I believe formed due to the pelvic pressures associated with 25 years of SIJD and PFD. There are a small number of Neurosurgeons in the country who deal with these, and while I am investigating the issue, I am not sure any of them can deal with mine at all, without subjecting me to unacceptable risk considering I have already attained a high level of function. So I would be highly skeptical if you claimed you could do anything for ME. Maybe you could do something for somebody with scarring in the alcock's canal. You need to make specific, reasonable claims to be believed - not vague referenced to all the different methods you use - and certainly you cannot claim to be able to fix all, or even the majority, or persons with PN.
I am sorry if this sounds rude but as ezer said, some of us have been taken for a ride a few times in the past and yes, we are skeptical with good reason. It is one thing to come out and say you have a new noninvasive modality to break up scar tissue in the alcock's canal, but please be specific and realistic about your other treatment modalities. And please let us know about the "Doctor" thing...MD? DO? DPT?...reason being, as you probably know there is a "Dr" David Wise out there who has a PHD, telling PN patients he can fix us if we spend $5,000 to attend his 6 day seminar where he teaches people to relax and stick their finger up their butt. So you are dealing with a skeptical audience. So I do not mean to attack you but just asking for clarification.
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.
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.
Re: Misdiagnosed Pelvic Disorders
Hermajesty
There is a lot of confusion around chronic prostatitis. Some PTs and websites claim that chronic prostatitis is only due to pelvic floor dysfunction but then some men recover with antibiotics injections in the prostate or even prostate removal (the PFD being a direct consequence of the inflamed prostate and not the opposite). It is of course all pretty anecdotal.
But yes, I agree, pelvic floor dysfunction is the end result of many pathologies.
There is a lot of confusion around chronic prostatitis. Some PTs and websites claim that chronic prostatitis is only due to pelvic floor dysfunction but then some men recover with antibiotics injections in the prostate or even prostate removal (the PFD being a direct consequence of the inflamed prostate and not the opposite). It is of course all pretty anecdotal.
But yes, I agree, pelvic floor dysfunction is the end result of many pathologies.
2002 PN pain started following a fall on a wet marble floor
2004 Headache in the pelvis clinic. Diagnosed with PNE by Drs. Jerome Weiss, Stephen Mann, and Rodney Anderson
2004-2007 PT, Botox, diagnosed with PNE by Dr. Sheldon Jordan
2010 MRN and 3T MRI showing PNE. Diagnosed with PNE by Dr. Aaron Filler. 2 failed PNE surgeries.
2011-2012 Horrific PN pain.
2013 Experimented with various Mind-body modalities
3/2014 Significantly better
11/2014 Cured. No pain whatsoever since
2004 Headache in the pelvis clinic. Diagnosed with PNE by Drs. Jerome Weiss, Stephen Mann, and Rodney Anderson
2004-2007 PT, Botox, diagnosed with PNE by Dr. Sheldon Jordan
2010 MRN and 3T MRI showing PNE. Diagnosed with PNE by Dr. Aaron Filler. 2 failed PNE surgeries.
2011-2012 Horrific PN pain.
2013 Experimented with various Mind-body modalities
3/2014 Significantly better
11/2014 Cured. No pain whatsoever since
Re: Misdiagnosed Pelvic Disorders
Again, I cringe when I hear or read the words "all" or "only" when it comes to science and/or medicine. Any doctor, scientist, therapist (I'd now like to add "stockbroker" to this list) who uses such absolutes shouldn't be entirely trusted.ezer wrote:Hermajesty
There is a lot of confusion around chronic prostatitis. Some PTs and websites claim that chronic prostatitis is only due to pelvic floor dysfunction but then some men recover with antibiotics injections in the prostate or even prostate removal (the PFD being a direct consequence of the inflamed prostate and not the opposite). It is of course all pretty anecdotal.
Very rarely, even with more simple and straightforward pathologies and conditions, can we use 'all', 'only', 'never'...etc. etc. That is especially true for disorders of the pelvis.
Visceralsomatic and somatoviseral responses are both possible (it isn't limited to one direction or the other).ezer wrote: But yes, I agree, pelvic floor dysfunction is the end result of many pathologies.
Re: Misdiagnosed Pelvic Disorders
I am in fact a doctor.HerMajesty wrote:Are you in fact a Doctor (MD or Osteopath), and what exactly is the treatment you offer?
I posted the basic summary of the treatment protocol on this forum under the heading "other therapies".
Re: Misdiagnosed Pelvic Disorders
Sure but you are the one that thinks there is a common etiology among a list of conditions you posted at the beginning of this thread so in some ways you made a case for the "all". So tell us more about it this common etiology.drkandrew wrote: Again, I cringe when I hear or read the words "all" or "only" when it comes to science and/or medicine. Any doctor, scientist, therapist (I'd now like to add "stockbroker" to this list) who uses such absolutes shouldn't be entirely trusted.
I read your site and I understand the treatment you are offering. I still am unclear about the commonality. So tell us more about this common etiology.
2002 PN pain started following a fall on a wet marble floor
2004 Headache in the pelvis clinic. Diagnosed with PNE by Drs. Jerome Weiss, Stephen Mann, and Rodney Anderson
2004-2007 PT, Botox, diagnosed with PNE by Dr. Sheldon Jordan
2010 MRN and 3T MRI showing PNE. Diagnosed with PNE by Dr. Aaron Filler. 2 failed PNE surgeries.
2011-2012 Horrific PN pain.
2013 Experimented with various Mind-body modalities
3/2014 Significantly better
11/2014 Cured. No pain whatsoever since
2004 Headache in the pelvis clinic. Diagnosed with PNE by Drs. Jerome Weiss, Stephen Mann, and Rodney Anderson
2004-2007 PT, Botox, diagnosed with PNE by Dr. Sheldon Jordan
2010 MRN and 3T MRI showing PNE. Diagnosed with PNE by Dr. Aaron Filler. 2 failed PNE surgeries.
2011-2012 Horrific PN pain.
2013 Experimented with various Mind-body modalities
3/2014 Significantly better
11/2014 Cured. No pain whatsoever since
Re: Misdiagnosed Pelvic Disorders
Thank you!HerMajesty wrote:Ezer, in response to your last post:
Connecting SIJD and prostatitis - I DO see the connection...not between SIJD and TRUE (bacterial) prostatitis, but a lot of men have chronic pelvic floor symptoms, multiple negative cultures of prostatic fluid, and are labelled "chronic prostatitis" based on symptoms, because the Docs cannot recognize the symptoms of male pelvic floor dysfunction. This ties into SIJD because pelvic joint dysfunction will create pelvic floor dysfunction by creating a drag on surrounding pelvic structures.
I simply don't have time to provide a Kinesiology degree to ezer over the internet.
It would be incredibly ignorant to assume visceral tissue dysfunction would not influence somatic function, and vice versa.HerMajesty wrote: I had interstitial cystitis for the past 20 years due to SIJD, but of course in the 1980's they told me the IC was aitoimmune or something...there is research now in which they have caused hemorrhagic cystitis in rats, by creating spasm in the muscle at the base of the tail. This occurs through neural pathways, as demonstrated because it does not happen using the same protocol when the nerves of the bladder are cut prior.
So yes, I do see a connection.
There is a plethora of research demonstrated the effectiveness of the treatments I am providing. Like I said, I do not have the time to help if you aren't willing to help yourself. Search each treatment modality individually on PubMed, Google Scholar, Elsevier, Science Direct, etc.HerMajesty wrote: What I have not seen yet is anything but the most vague references to how you, drkandrew, have a cure-all for all these things. I understand you have a method to break up scar tissue - not all of us have scar tissue.
However, as I stated, our approach is novel, so there is currently no scientific research (that I am aware of). Yet, given the success of these techniques for other nerve entrapments, myofascial and joint dysfunction, and suboptimal biomechanics, it was common sense to apply it to PNE. As we began treating patients, the results were dramatic.
Our protocol isn't limited to 'breaking up scar tissue'; it addresses a multitude of potential etiologies, thus it uses a comprehensive multimodal protocol consisting of many therapies, pre-established for their clinical efficacy and safety. It is a complex protocol. Which is what a complex condition necessitates! One reason for Medicine's historically poor results in treating these conditions is oversimplification and reductionism.
Yet, lets be clear: No therapist or clinician has a 'cure-all' for any condition. That is simply unrealistic.
I'm glad Mr. Hesch helped you so efficiently.HerMajesty wrote: Personally, I was made 75% better by having my SIJD corrected by Jerry Hesch, MHS, PT http://www.heschmanualtherapy.com . Are you claiming to have the ability to correct SIJD as efficiently (mine took 2 visits) and permanently as Mr. Hesch can?
My clinic effectively treats dozens of SIJD per day. It is a common condition. Some patients respond very quickly, some require more time. Response and prognosis depends on a plethora of factors, such as chronology and chronicity, posture, occupation, athletic involvement, myofascial involvement, etc. etc. etc. etc.
I cannot provide a definitive answer to your question simply because none exists. Your question is radically inappropriate because it oversimplifies therapy and the human body, which again, ironically, is ultimately the problem with most current therapies.
Sadly, you're correct: I do not treat Tarlov Cysts.HerMajesty wrote: Now, my remaining symptoms are most likely due to large S2 Tarlov cysts, whic I believe formed due to the pelvic pressures associated with 25 years of SIJD and PFD. There are a small number of Neurosurgeons in the country who deal with these, and while I am investigating the issue, I am not sure any of them can deal with mine at all, without subjecting me to unacceptable risk considering I have already attained a high level of function. So I would be highly skeptical if you claimed you could do anything for ME.
Thus, you aren't a good candidate for our treatment. All w could do is treat any potential secondary musculoskeletal causes or adaptations.
A health history intake form, which you fill out before being considered, would identify you as a poor candidate, and unlikely to benefit from our protocol.
Absolutely.HerMajesty wrote: Maybe you could do something for somebody with scarring in the alcock's canal.
I do.HerMajesty wrote: You need to make specific, reasonable claims
That isn't up to meHerMajesty wrote:
to be believed
I've stated quite clearly what we treat, and what we don't. However, sadly, many people don't know what they have due to years of misdiagnoses. Therefore, the point of this thread was to list all the conditions we have come across in practice that have been used erroneously as labels for other conditions. We had a patient who was misdiagnosed a dozen times, all with different condition names, and all incorrect. It was merely a PNE, which we successfully treated.HerMajesty wrote:
- not vague referenced to all the different methods you use
No scientist, therapist, clinician or anyone else in any other field in existence should or could ever truly claim to fix 'all' of anything.HerMajesty wrote:
- and certainly you cannot claim to be able to fix all, or even the majority, or persons with PN.
The majority, however, can be fixed. Why? Because we have already successfully treated the majority of the patients with PNE we have seen. Our sample size is small of course, but so far it is 100% successful. That certainly doesn't mean it will always work for everyone! Nor would I make such a ridiculous claim!
This is tragic, and sadly is the norm as opposed to the exception. This is the exact reason we have developed this protocol. One of the developers and therapists administering this protocol was a sufferer of PNE! This is how we perfected our treatment. We 'experimented' on him, with his consent, because he was fed up with false promises, misdiagnoses, and suffering. This protocol arose out of sheer desperation!HerMajesty wrote:
I am sorry if this sounds rude, but as ezer said, some of us have been taken for a ride a few times in the past and yes, we are skeptical with good reason.
The other treatment modalities are highly effective for what we are using them for: secondary causal and adaptive elements of the condition, to address the full spectrum of the condition. As mentioned, most therapies fail because they are, at best, incomplete or oversimplistic.HerMajesty wrote:
It is one thing to come out and say you have a new noninvasive modality to break up scar tissue in the alcock's canal, but please be specific and realistic about your other treatment modalities.
DCHerMajesty wrote:
And please let us know about the "Doctor" thing...MD? DO? DPT?
The Wise-Anderson protocol is, in my opinion, an attempt to address the biomechanical, myofascial and lifestyle factors related to the condition. Given the price coupled with the limitations of the treatment, I can confidently say our protocol is more sound. That is, of course, my opinion.HerMajesty wrote:
...reason being, as you probably know there is a "Dr" David Wise out there who has a PHD, telling PN patients he can fix us if we spend $5,000 to attend his 6 day seminar where he teaches people to relax and stick their finger up their butt. So you are dealing with a skeptical audience. So I do not mean to attack you but just asking for clarification.