Health Organization for Pudendal Education

Thank you for your post, Dr. Andrew and for your efforts with trying to help chronic pelvic pain patients!
I admire your willingness to improve the procedure and hope many more people will benefit from it.
Kind regards,
Karyn

Dr. Andrew, since your post was obviously directed toward me, I wanted make a few points.

1.Yes, I was offered free treatment if I return to Cornwall for more treatments. However, travel, lodging, food, etc isn't exactly cheep. It would still cost my husband and I around $2500 US to travel for a 2nd treatment (traveling alone is not really an option as the pain is intense and one needs a driver and more importantly support to endure the treatment). This is still a big investment, when you don't have much money like us. I was offered mesotherapy injections with the naturopath Dr. Andrew mentioned, to treat my SIJD. When I searched for mesotheray I could only find that it is used for the treatment of cellulite in the States. Dr. Andrew sent me a link to an article abstract http://www.ncbi.nlm.nih.gov/pubmed/16175148 where mesotherapy along with SI belt and stabiliznig exercises was used on 11 out of 22 people (a very small study size). This is good, but my question would be, how to do we know that the mesotherapy alone is responsible for the pain reduction? Vicki Sims, SIJD PT claims that 80% of patients respond to conservative treatment for SIJD (stabilization, exercises, SI belt/taping). So the 11 people who responded well could have never had any conservative treatment and are just responding to proper exersies/stabilization. I tried contacting the naturopath Dr. Andrew reccommends for this, but she did not respond. I am not sure I understand how mesotherapy treats ligament lxity, but if it did, I am sure that multiple treatments would be needed (much like prolotherapy -which is usually 6 sessions every 4 weeks or so). I can't exactly fly to Canada every month. The mesotherapy would have to take effect before I could continue with the ESWT/ART to treat the PN....if SIJD was the cause of my PN. So this would end up being many repeat trips to Cornwall. It is very kind of you, Dr. Andrew, to offer free treatment to people, but how exactly would free accupunture or PT help people who live in the States? We cannot travel to Cornwall every week, so would we just have to move there for a while until we were better or are you offering to pay people's local PT and accupuncturist? I was not offered free PT, accupunture or couseling - so this is something new to the treatment protocol. I do have to wonder a little if you are offering free treatment because you want people to keep coming back so the "success" of your protocol is not hurt. Then when people do not respond well and don't want to come back you can say, "well, I offered them free treatment" and just take them out of your statistics? Or perhaps you want to keep people from posting their experience like I did on public forums? Offering free treatment is nice for those that the treatment helps, but if the first treatment makes you worse the free 2nd trip doesn't help the situation. I am still out $5900 US and am in more pain (at 15 weeks post treatment). No amount of money is worth that.

2. Continuation of the streatching/ exercise plan: this "post treatment" rehab is very basic honesly. Most of us who have had PN for any length of time prior to seeing you will have already been giving this stretching routine (hip flexors, quads, adductors, piriformis, hamstrings, glute medius) by other PTs and have been doing it for months. The abdominal hollowing or working the transervse abdominus is the first exercise I was ever given by a PT. You say to avoid sitting more than 20 mins, repetetive hip flexion, running, and cycling. Most of us can't sit more than 20 mins to begin with and I don't think too many of us are going for jogs or getting on a bike at this point. The sight of bicycles makes me cringe!!

3. Theories are good, but they only go so far. As it's said, "the proof is in the pudding". I hope there will be more success stories to come from your protocol in the coming months, but in general this patient population wants to see success not theories. When I asked you why I should come back for a 2nd treatment when I am still in more pain after the first treatment, you would not answer that. All you could say is that others have come back and been helped (though these people are not available to talk with personally) and that you "saw no reason why the protocol shouldn't work for me". That doesn't answer my question though of why. You have also not ever explained to me how such an aggressive treatment protocol can be good for someone with central sensitization (hypersensitivity of the central nervous system). How does inflicting more pain break the pain-cycle? How will the treatment magically work the 2nd time if it only made the person worse overall after the first time and if perhaps the pain generator is not fixable by ART/ESWT?

I am writing to you publically on this forum because you did not respond to my email when I asked some of these questions and told you I would not be returning for treatment. You are a very charasmatic person, Dr. Andrew. Most people who pioneer something like this are, but you can be extremely persuasive and I think we as a patient population have to be careful. Like most treatments there are good responses and bad to your protocol - why this is is the question we all have. There is still much to be learned about pelvic pain, especially pudendal neuralgia and I think when there is doubt about the efficacy of a treatment, as you said, it is the patient's decision to pursue it or not.

I believe coming to accept that pain may be a part of life to stay and looking for purpose outside our physical condition and circumstances can bring the greatest healing. It's the avenue I'm pursuing most at this point as my hope and joy come from God and my times are in His hands.

Would Dr. Andrew's update have been better located under the original topic posting where he introduced the ESWT protocol on HOPE? More importantly it would have kept a respectable distance between the rights of both a patient and their health care provider in sharing views/experiences/services.

I appreciate Dr. A's efforts to improve the patient experience and encourage the clinic in working together to develop effective treatments for the all too complex pelvic nerve pain sufferers. I hope that there are many more success stories to come from this treatment protocol but there is also much to be learned from the unsuccessful experiences as well.

I am still very confused about the price of the ESWT. According to this article http://tinyurl.com/8ozax58, where Dr. Andrew is quoted and shares about ESWT for pudendal neuralgia, it says, "Where it [ESWT] would have cost $400 per treatment four years ago, they now run at $85 per session and are covered under chiropractic and massage therapy."

If the ESWT costs $85 per session and there are 5 sessions in the PNSBDS protocol that equals $425 CAN. Then if Dr. Andrew charges what he charged me, $2200, for the ART and his services (reviewing records and follow-up care) the total cost of treatment should be $2625 CAN.

Perhaps the Canadian government subsidizes the cost and the $85 is only for Canadian citizens (I don't know how their healthcare works), but I don't believe Lernica said that her insurance covered the treatment, but I may be wrong. Or maybe the $85 is per hour (though it says per session), even so, I might have had 3 hrs of treatment (with breaks in-between) the first night, but the other nights were 2 hrs max and two of the nights I don't think I even had that much because Glenn (former ESWT provider) felt like I was too bruised and swollen already, mostly from the ART. Even if it was $85 an hour, one would have to be treated 3hrs each night with ESWT to come close to the current standardized $3500 CAN.

I just bring this up so those who are considering future treatment with Dr. Andrew can get in writing what they will be charged for ahead of time and a breakdown of those charges. Dr. Andrew gave me a breakdown of his $2200 charge, but Glenn (former ESWT provider) didn't. A breakdown is important I believe when spending large amounts of money like this.

Dr. Kirk Andrew,

The moderators have deemed your comments to Faith to be in violation of the forum rules of conduct. Please edit your post on page 2 of this thread immediately http://www.pudendalhope.info/forum/view ... =36&t=3649

Thank you,

Hope Forum Moderators

drkirkandrew wrote:
2) Affect and beliefs about the cause of the condition:
- a preference for passive care types (medications, surgery) is associated with poorer outcomes for almost every Musculoskelatal condition. Patients who fare better are those who participate, and are involved in active care types (there is a plethora of research to support this).
- Fear-avoidance behaviour: this pertains to a patients perception of pain. This is a highly complex topic. It is important to understand the psychological/emotional aspects of pain (and how they can dramatically effect treatment effects and responses). This is a huge field, and the PNSBDS protocol is now addressing this aspect (as we have learned that a few cases that have not responded can be attributed to various degrees to behavioural responses as as result of the psycho-emotional components of pain).
- Expectations


Here is a basic introduction to understanding pain:

Is pain real? Yes, to varying degrees. Nociception is the neurological mechanism that is responsible for signals that conduct information regarding the state of various tissues, usually pertaining to some insult (chemical, physical, etc.). Certain types of fibres (C-Fibres and A-Delta Fibres) are responsible for nociception. Nociception is the objective aspect of pain.

Nociception only becomes what we experience as 'pain' much after the signals pass into the sensory cortex and are interpreted by conscious mind. This interpretation is entirely subjective, and can vary, depending on numerous variables such as: mood, past history, social and cultural conditioning, beliefs, thoughts, etc. etc. This is one very important reason why many people with the same injury can have drastically different functional levels (one person can find a certain level of nociception disabling, while another will remain functional).

This topic is not popular with chronic pain sufferers, for many reasons. Some reasons are valid, such as:
1) Resentment towards any mind/psychological/emotional component to pain as a result of being told by doctors that it is 'in the head' (most often because the doctor is unable to identify the cause due to a lack of understanding).
2) The nature of pain, and it's subconscious ability to create a defensive fear-based entrenchment into the very identity of a patient.
3) Addiction to pain, which is both psychological and chemical. Chemical addiction to pain occurs through up regulation of receptor sites and nerve-growth factors being produced as a result of a nociceptor receiving constant pain signals (much the same way a cigarette smoker has an up regulation of nicotinic acetylcholine receptors (nAChR), which causes a 'demand' for this the molecules that bind to the receptor sites). Pyschological addition to pain is a more difficult and taboo subject, and there are many various routes to address this, from spiritual to psychological to psychiatric (pharmaceutical).

Understanding the psychological and neurological and spiritual aspects of pain and suffering is one of the only ways a person can productively deal with their pain. One such teacher who has helped countless chronic pain patients and sufferers effectively deal with their pain is Eckart Tolle. This may resonate well with some patients, and not at all with others. Often, it is the case that a sufferers 'Pain-Body' and 'Ego' will attack any threats to the continuation of pain, thus we often see people react negatively to any methods such as that provided below.

There are may other more scientific lecturers who teach the mechanics of nociception, pain and the psycho-emotional components (and how to overcome being disabled and miserable as a result of pain). Dr. Joe Dispenza, Dr. Bruce Lipton, Dr. Candice Pert, to name a few, are great resources.

Again, this is not a denial of the existence of pain (nor denial of the insult to tissues responsible for nociception seen with PN/PNE), but rather a discussion of management of an important part of chronic pain (and its relation to quality of life).

It is still the case that the physical insult causing the nociception in PN/PNE cases must be addressed. But as with any condition (for example, with cancer patients, research demonstrates that those with a positive affect have higher survival rates than those who do not), the interpretation and perception of pain impacts the course of the disease.

Good luck everyone. I hope some positive direction, any direction at all, is welcomed (as opposed to the negative self-reinforcing behaviours that are all too common on these boards).

http://www.youtube.com/watch?v=2PCSe2cqY_w

Dr. Kirk Andrew has been banned from the forum for not complying with the code of conduct rules.

The Moderators of HOPE

So Dr. Andrew has been banned from the forum for a 2nd time...he was banned the 1st time after showing up on this board with a "hard sell" approach and openly insulting those of us who objected. Faith I am sorry you had to go through not only a painful experience but also it seems some intimidation by a practitioner, related to sharing your story. Thank you for sharing your experience and I hope in the long term you recover fully from the exacerbation. I have not been reading the posts related to ESWT, so I hope that some patients at least experienced a true and dramatic benefit from Dr. Andrew's services: I would like to believe that the whole thing is not simply an episode of exploitation for profit.

Must echo HM's sentiments faith. We 'know' you here, so as well as understanding the problems with PN and other pelvic issues that you have had to research (as we all have had to ) and endure, It was always in a hopeful attempt to get your painful problems resolved at last.
As they say 'you can't knock a girl for trying,' and we won't allow it either
Take care,
Helen

I was not aware that Dr. A. had been banned previously. I felt badly for Faith having to deal with this matter on top of her unsuccessful experience with the ESWT treatment. I am grateful she chose to share that experience on HOPE.

If patients can't speak honestly, and without fear of retribution, about our medical experiences then how in the world will progress ever be made? It takes courage to speak out and address inefficiencies, failures or weaknesses in healthcare, a provider of those services should never attack the messenger aka the patient, which sadly happens all too often. Thanks "mods" for taking the higher road.

While I really sympathize with Faith for the ESWT treatment not working for her, is it a good policy to prevent medical professionals from defending themselves on the forum? Doesn't this potentially open up the website to defamation lawsuits? I'm sure the moderators have thought about this issue, I'm just curious.

I definitely think that we need to be free to share our experiences about medical professionals, both good and bad, and I definitely have here. I just don' t know that it's fair not to post a medical professionals replies for everyone to see and make their own decisions. Once again, I hope that Faith is doing better, and this comment is not in any way intended to minimize her bad experience or pain.

Hugs,
Jackie