Thoughts on SP, PT in general and the passage of time...

[scotsman]

SP for me means a complete lifestyle change and unfortunately different people have different abilities in making that happen. I don't think it's easy to do well, people manage to do parts of it and then get mixed results.

I know I don't do it properly. The physio is home-done and I don't do nearly anywhere the amount of relaxation that I have to. My life is currently very stressful (work and young family) and the amount of physio and relaxation work I do manages to keep my symptoms at the same level - not getting worse and not getting better. The balance I've got is my choice this now though and hopefully next year might see me being able to commit more to it. What I do know is that I've had times in the past when I have committed to it more fully and I have seen significant steps forward.

Richard.

[webslave]

So what? That is not a sign of quality. Most papers presented there never get published, in fact only 37% of abstracts presented at the AUA meetings eventually get published in peer reviewed journals.

However it was still presented in front of the world's biggest forum on urology. I appreciate it's a subjective comment but then so is "some Italian journal".

Unfortunately it just so happens that although it sounds elitist and snobbish, the biggest, most famous medical journals do have higher standards and better peer review. When assessing the weight of a study, it's not uncommon for people to take into account which journal finally published it.

Why the rolling eyes? He was extremely upset, Riccardo was, and with good reason. Take his case into account if you are considering injections.

Absolutely. Neither Guercini or Bahn claim the procedure is risk free - in fact Bahn suggests it's only an option if all others have been exhausted - but Riccardo is just an anecdotal account. You know as well as I do that unhappy customers are much more vociferous than happy ones.

James-d is a happy client and he posts here regularly. He's much more talkative than the unhappy ones.

bti20 promised to update his after e-mailing his cure story. He never did. Your assumption that there is no cure because he didn't post here is tenuous to say the least. There are a lot fo people who promise to and, unfortunately, never do.

Did he? viewtopic.php?f=5&t=3558&p=18348 He said: "If people want to ask me questions about my post then I will view all of them over a period of a few weeks and then write an another message for you to post on the forum". No questions were asked, so no further messages were sent.

Taking travel into account probably not. Treatment wise it's cheaper.

You are obviously not familiar with the US medical system, where the cost for a flouroscope-guided or TRUS-guided series of injections will run into the many thousands. This is not the NHS.

Outline for me how you'd design a double blinded study for the SP.

Eh... long term study comparing control subjects who practised, say, meditation and had Swedish massage against PR and TP treatment? Don't know, but then it's not for me to do.

As long as the Swedish massage goes nowhere near the pelvis, eh? You see, it's actually a very hard study to design.

The Wise and Anderson study (PMID 16952676) states an average 5-month followup.

A HEADACHE IN THE PELVIS talks of a year to two years.

He's being conservative so that people stick with it. The study shows excellent results in about 5 months. And many men here get relief in a much shorter time frame than that.

[Sleeper Service]

Unfortunately it just so happens that although it sounds elitist and snobbish, the biggest, most famous medical journals do have higher standards and better peer review. When assessing the weight of a study, it's not uncommon for people to take into account which journal finally published it.

Agreed.

James-d is a happy client and he posts here regularly. He's much more talkative than the unhappy ones.

So should we listen to him more than Riccardo? We can't have it both ways.

You are obviously not familiar with the US medical system, where the cost for a flouroscope-guided or TRUS-guided series of injections will run into the many thousands. This is not the NHS.

The cost is $300 for the first TRUS and injection. Thereafter they are $200 a pop. I am familiar with the costs, thanks.

As long as the Swedish massage goes nowhere near the pelvis, eh? You see, it's actually a very hard study to design.

Which doesn't mean they shouldn't do it.

He's being conservative so that people stick with it. The study shows excellent results in about 5 months. And many men here get relief in a much shorter time frame than that.

Again agreed.

[webslave]

James-d is a happy client and he posts here regularly. He's much more talkative than the unhappy ones.

So should we listen to him more than Riccardo? We can't have it both ways.

I'm not saying we should listen to one over the other, but simply showing that your contention that the unhappy patients are more voluble is incorrect. I think that both should be listened to, and by listening to them we learn that there can be successes, but there can be serious side-effects. Now what attracts me to the Stanford/Wise-Anderson Protocol is that these serious side-effects are absent, but the success rate is high (over 70%) within 5 months.

You are obviously not familiar with the US medical system, where the cost for a flouroscope-guided or TRUS-guided series of injections will run into the many thousands. This is not the NHS.

The cost is $300 for the first TRUS and injection. Thereafter they are $200 a pop. I am familiar with the costs, thanks.

I see you got those numbers from MikeinCA's posts. Happy news if true. I had some injections into my shoulder in the US and they were extremely expensive, much higher than that. A TRUS on its own is over $100, the drugs in the injection cost a lot (Gentamycin, Levaquin, Diflucan, Bethamethasone, Lidocaine, Torado and Flagyl), the attending nurse, etc. I mean, the cost of TRUS and prostate biopsy in the UK NHS is £325, so it's impossible that it would be cheaper in America. Then again, the biopsy on its own is expensive, so it is possible that the TRUS and injection could be given for $300, but with the travel costs factored in, how much of a difference is there really? Perhaps a few thousand. So yes, if those figures from Mike are correct, the Stanford/Wise-Anderson Protocol would be more expensive than 3 injections (Bahn). Not sure of Guercini's charges though.

Update: I see that MikeinCA said that "Actually Dr Bahn never did charge me for the TRUS just the medication". Ok, that would explain it.

As long as the Swedish massage goes nowhere near the pelvis, eh? You see, it's actually a very hard study to design.

Which doesn't mean they shouldn't do it.

But it does mean that they may not be able to do it.

[webslave]

It's probably worthwhile quoting these Usenet messages at this juncture too:

I visited Dr Bahn in Detroit for 3 injections in February and March 2002. I would recommend this treatment for any long term sufferer. I had about 3 months of relief. I'm still doing better than before I visited him, but the perineal pain is back.

I have been to different doctors in different places, Dimitrakov in Bulgaria, Guercini in Rome without relief. I know of 5 people that have been to Guercini and none of them is cured. Therefore I know that this is a lucrative business for people wanting us to come to them for treatment.

[Sleeper Service]

I'm not saying we should listen to one over the other, but simply showing that your contention that the unhappy patients are more voluble is incorrect. I think that both should be listened to, and by listening to them we learn that there can be successes, but there can be serious side-effects. Now what attracts me to the Stanford/Wise-Anderson Protocol is that these serious side-effects are absent, but the success rate is high (over 70%) within 5 months.

True.

I see you got those numbers from MikeinCA's posts.

Those actually are Bahn's costs though. Others I cannot comment on.

But it does mean that they may not be able to do it.

Perhaps, which is what makes the matter so vexing.

[Sleeper Service]

As an afterthought I downloaded the results for Anderson, Wise, Sawyer and Chan's paper, the abstract of which is given below:

http://pubmed.ncbi.nlm.nih.gov/1594 ... d_RVDocSum

Rather disturbingly the abstract doesn't seem to mention that about 20% of patients actually felt worse after treatment. Whilst I realise that SP is a long term thing, given that the protocol has been described as having no adverse effects perhpas Drs Wise and Anderson could comment?

[webslave]

The study in question used myofascial trigger point assessment and release therapy (MFRT) in which individual muscle groups are palpated and myofascial TrPs identified; pressure is held for about 60 seconds to release. (Interestingly, the study comments that the levator endopelvic fascia lateral to the prostate represents the most common location of TrPs encountered in men with pelvic pain). However, the treatment (MFRT physiotherapy) was only given weekly for 4 weeks, then bi-weekly for 8 weeks. Weekly is not nearly enough, in my opinion, using my experience of treating trigger points in my right shoulder muscles resulting from computer mouse overusage. The treatment ideally is given frequently, more than once a day in my case, for optimal results. This is just my opinion, not that of Dr Wise or Anderson. I notice that when I start treating shoulder trigger points, the pain initially flares up a lot, then subsides over a period of days. I suspect that intermittent treatment would simply keep provoking the flare without bringing the improvements. Keep in mind that people like CPPSDAD treated himself frequently and successfully (using a Theracane), whereas we see a lot of guys here who do not seem to progress well with sporadic or long interval treatments from their physiotherapists.

Last point is that with any disease you tend to get this outcome, regardless of what you do: one third improve, one third the same, one third worse. In light of that, a mere 20% worse is actually a recommendation.

If you like, I can take this up with DW.

[Sleeper Service]

In chronic prostatitis / chronic pelvic pain syndrome the 'one-third better, same or worse' theory isn't really true over general treatment in the longer term as the majority - sadly not all - of chronic prostatitis / chronic pelvic pain syndrome cases significantly improve or resolve over time. I think I've posted the short and long term studies demonstrating this point. I appreciate that you're probably referring to serial monotherapy though and even then I would disagree - the figures are more like 40/40/20.

I also appreciate that short term results over a couple of months aren't really representative which is why we should pay little heed to figures like "40% showing a 50-100%" improvement if we then ignore the 20% who got worse precisely because they follow this same 40/40/20 pattern. The figures are meaningless unless we have long term follow ups of these patients over a, say, three year period.

It would be useful to know if Drs Wise and Anderson have long term statistics on their patients so we could have a meaningful understanding of the efficacy of their treatment and so we could compare it to other studies to see if their resolution rates are statistically better.

I would be grateful if you would take this up with him.

[webslave]

I sure will. A useful point is that I have had contact with several people who are still pain-free, several years after SP and SP-like treatments. Unfortunately that is only anecdotal.

[Sleeper Service]

Thanks, webslave, appreciate it.

Also want to be clear that I view programmes like SP and other variants to be of real use in resolving this issue. I just wish we had a nice league table of all the treatment options and their results!

Ah well, wishful thinking...

[superuse]

One of the things that struck me over 4 years ago about Dr. Wise was the amount of telephone time he spends with patients.The concept of uros even "cashing in" on chronic prostatitis / chronic pelvic pain syndrome or abacterial prostatitis or whatever is ludicrous as after they've screened out life threatening or abnormal stuff you become a break-even "Psych case" the insurance company does not reimburse well for repeat visits.

He may be sorry your wee-wee or bum hurts but there's nothing he can do and he's got surgery in the morning for a bladder cancer patient (with a 50% 5 year survival prognosis) soooo...

Some of you folks from Europe or UK could probably hit London to Cincinnati OH, then on to Stanford for a week or so, make a trip of it and be back home for less a local could with the exchange rate.

I don't think for about $5000, the SP seminar is out of line, especially with a Chinese Dr. with $20000+ secret (invasive) course of treatment (in a country with an average wage of $900 no less), or another in Europe with a $14000? seminar. I have read the PNE surgery in France was well over $20000. Besides, as one notes you can read about and try the SP protocol yourself for free. I think you can read the published results from the SP group too.

And what's with this Stanford/Wise-Anderson Protocol "SP"? Shouldn't a profiteering egomaniac like Wise with his long individual phone conversations and $20 books and $5000 seminars have named it "Wise's Treatment for Anal Retentives"? (WTAR?). I personally think it would be better with a $400 package of book and tapes on late night TV or better yet ...Home Shopping network ! (4 $100 easy payments on mastercard) Wise and Tim could demonstrate the problem, relaxation and internal trigger point therapy with the pelvic map and gloves and KY jelly and everything. They'd be rich!

[scotsman]

I like the post superuse :laugh:

[webslave]

Yes, welcome levity.

[Sleeper Service]

All very well but I don't actually care how much it costs. All I care about is if it works.

The point is that I have read the published results and, bluntly, they're no more impressive at this moment in time than other 'fringe' treatments. Perhaps as time moves on they will be but at the moment... nope. All we have is some short term data on a small number of patients showing improvement rates little better than a placebo and actually less impressive than other non sham controlled double blinded studies. Aside from that it's anecdotal tales, nothing more.

Sorry to break into comedy hour but that's the way it is. If they start recording:

a) Long term follow up data
b) The improvement on people with longer term symptoms

then I'll be a bit more deferrential. Until then you'll forgive me if I don't subscribe to the Church of SP.