Stanford/Wise-Anderson Protocol PARTICIPANTS PLEASE READ....

[bbdave]

Okay, I'm seriously considering doing the Stanford trip in September or October. I've gotten over the financial commitment...spoken to Dr. Wise...etc.

What I'd like is some feedback from the people who have done this. I have spoken with one board member who told me to go and go now. Just looking for more opinions. What's good. What's bad. What I should be concerned about......

Just to make you aware, my symptoms are almost entirely 'posterior.' In other words, nothing in my penis, testicles, perineum, etc. Can't say that I've ever had any pain or problems with sex, before or after. I did have one diagnosis of 'prostatitis' several months ago.

What I do have is the 'golf ball,' lower back pain, pain in my tailbone, etc.

I appreciate any feeback if you've attended.....or if this stuff has already been posted somewhere on the site, please direct me to it.

BBDAVE

[CppsDad]

Your symptoms seem fairly local. I think that's a good sign you'll be able to recover. For me, the golf ball sensation was one of the first to go. The "tailbone" pain was almost entirely caused by muscles around my coxcyx, again, easy to treat. I think you'll get a lot out of it. Too bad it costs so much. I know I suggested to try a PT locally before making the huge committment, given your concerns. Have you had any luck searching for a PT?

Mike

[alprost]

What I'd like is some feedback from the people who have done this. I have spoken with one board member who told me to go and go now. Just looking for more opinions. What's good. What's bad. What I should be concerned about......

The physiotherapy is world class, the environment, relaxation sessions and educational process are also all excellent.

There is absolutely NOTHING to be concerned about.

Just to make you aware, my symptoms are almost entirely 'posterior.' In other words, nothing in my penis, testicles, perineum, etc. Can't say that I've ever had any pain or problems with sex, before or after. I did have one diagnosis of 'prostatitis' several months ago.

What I do have is the 'golf ball,' lower back pain, pain in my tailbone, etc.
BBDAVE

What symptoms you have depend on where your trigger points are. I had the 'golf ball' and also severe coccygeal pain (like sitting down on a spike) you describe above. These were all resolved by internal physio and pelvic floor relaxation. My only remaining symptom is urinary frequency, although that has improved from 5-10 times a night and every 20 minutes during the day, to 1-2 times a night and every 2 hours during the day. I'm hopeful that these symptoms too will continue to dissipate over time with the protocol.

My only regret is that I waited so long before going over. My advice would be to take the leap of faith and make the investment in your future by attending the clinic.

You will not be disappointed, although it can be a rocky road to recovery at times!

[TK]

Dave,

Having been long ago cured -- 100% -- after a long period of "wandering in the wilderness of fear and misinformation"...

I can appreciate the impulse to go for what seems to be the "gold standard" Stanford/Wise-Anderson Protocol.

But the truth is that -- in a town like Atlanta -- there are almost certainly a number of physical therapists I have been treating the pelvic floor muscles FOR DECADES.

Some may be aware of the Stanford Protocols, or more specific nuances of chronic prostatitis / chronic pelvic pain syndrome in men, and this of course helps.

But while I have enormous respect for Dr. Weiss and Dr. Anderson; while I regard them both as heroes for refining "the cure" and bringing it to the masses...

This really came from the community of physical therapists... the Tim Sawyers of the world who have been treating pelvic floor muscles in the context of urinary incontinence and other ailments.

It is not just that the trip to California is an un-necessary expense.

Depending on your individual condition, this cure is a gradual one that is best accomplished with a series of one or two brief treatments each week over a series of many weeks?

My opinion is that you would be much better off with a local therapist -- not only to save money and to avoid interrupting your livelihood, but to allow the cure to proceed at a more gradual pace.

If you did not live in Atlanta; if you lived in some locale where you could not find a therapist, my advice would be otherwise.

But what I suspect is that an element of desperation is driving your decision to go to California.

No need to be desperate Dave.

You get somebody who knows what trigger points are and who is experienced with working with pelvic musculature.

Chances are they are aware of Stanford, but it not you give them "the book".

Dave, for most people the cure is routine.

You don't need to go to California for either a broken wrist or the rehabilitation of your pelvic floor muscles.

[alprost]

TK - I agree with you, but I'd like to make a couple of points:

But the truth is that -- in a town like Atlanta -- there are almost certainly a number of physical therapists I have been treating the pelvic floor muscles FOR DECADES.

I obviously have no idea of what may and may not be available in Atlanta, but if there are reputable PT's who have a proven track record of treating CPPS, then yes, of course this should be your first port of call - it may also be the only one you need to make.

Depending on your individual condition, this cure is a gradual one that is best accomplished with a series of one or two brief treatments each week over a series of many weeks?

Again I agree - there is no conflict between this point and what the Stanford/Wise-Anderson Protocol/clinic advises.

Dave, for most people the cure is routine.

I agree. Again, the whole point of the Stanford Clinic is to give patients the tools to establish this routine. If you are one of the lucky ones who has access to an experienced PT locally, you can get them this way.

You don't need to go to California for either a broken wrist or the rehabilitation of your pelvic floor muscles.

This all depends - for some of us with absolutely no access to a trained PT locally there is a need to do this. I was previously treated by 2 PT's, both claiming knowledge of treating CPPS. Between them, they both missed over 15 internal and external trigger points. As an aside, my girlfriend, with absolutely no training whatsoever, found and treated many of the internal ones these guys missed before we even went over to Stanford.

So....we're basically saying the same thing - if you can get access to a local PT who can also advise you regarding other aspects effecting your condition (e.g. anxiety), then this is the obvious route to go down. But, it would be a good idea to get a recommendation to one, either by a fellow patient, or from someone like Davis Wise or Tim Sawyer. That way you are giving yourself the best chance of finding a PT with real skills.

If you can't, then the Stanford Clinic is by far the best option for the reasons outlined in my original post.

You get somebody who knows what trigger points are and who is experienced with working with pelvic musculature.

I agree, fundamentally that is what all patients have to do - somehow. I think the reason for our differing perspectives on this issue is that we have had vastly different personal experiences: You were able to find a PT locally who did have real skills in treating CPPS, whereas I had the experience of wasting a lot of time - and a heck of a lot of money - repeatedly travelling to see PT's who didn't.

Getting access to a good PT is the key problem most patients face. I have seen many posts from people on this forum in recent weeks, who are in treatment, but who do not appear to be recovering, as they are not on the correct path with regarding the 2 key aspects of treatment i.e.

• They are not able to access PT from a skilled practitioner.
  
• They are not effectively addressing the issue of healing through pelvic floor relaxation and rehabilitation.

This really saddens me, and the one thing our discussion has reminded me of is how far we still have to go so that the majority, rather than the minority, of men have access to effective treatment.

[alprost]

TK - Just a quick question while you are here. I am now in the position where all of my TP's have been treated, and I'm left with what feels like nerve pain/tingling in a couple of areas, although this has settled down a bit since I stopped exercising.

Did you go through a phase after you were finished PT where you were left with similar symptoms not (directly)caused by trigger points?

If so, did these symptoms settle down over time?

[TK]

Alprost.

It absolutely does take some time for the remaining symptoms to settle out.

In my case, this took place gradually over a period of about 4-6 months.

I think this was a function of neuropathy... the "central sensitization" which has been discussed here on the forum.

The nervous system learns to read innocuous stimulus as pain and it takes awhile to revert back.

At the time I remember using chamomile tea and looking for other foods/supplements that had "apagens" in order to hasten the process, but -- as is often the case -- I am not sure what role this played.

Rest assured though, there is life after CPPS. I have zero pain, zero discomfort, a very active sexual life, and could sit down and work 24 hours at a stretch if I chose to.

I look back on all of this like a bad dream.

The only thing that remains is the anger at a urological community that -- with a few laudable exceptions -- decided that it was easier to dismiss "prostatitis" rather than to look for answers that were already right under their nose.

Physical therapists have been rehabilitating pelvic floor muscles in the context of post surgical incontinence for decades now.

[alprost]

TK - Thanks a lot for that!

The nervous system learns to read innocuous stimulus as pain and it takes awhile to revert back.

Yep, I'm certain that that is what is going on in my case. It is reassuring to hear that others have experienced this during their recovery.

Glad to hear things are still going so well.

Alan.

[HuckFinn]

I attended the clinic in June of last year, and it was the smartest thing I could have done. At the time, my symptoms were excruciating and debilitating. Now, I'm generally either pain free or have only mild discomfort, depending on the day. The only stubborn symptom that persists at a bothersome level is urinary difficulty, and even that has improved from a 1 on a scale of 10 to about a 6 out of ten, with 0 being totally nonfunctioning and 10 being pissing like a racehorse.

All the staff at the Stanford clinic are phenomenal. Even if you can find PTs in Atlanta to administer trigger point therapy, you should still go to Stanford, because there you'll get invaluable instruction in a crucial part of the rehab--namely, relaxation therapy. In addition, you'll undergo trigger point therapy from the best practitioner in the country. You'll also get a thorough going over by Rodney Anderson, who'll give you a diagnosis you can bank on. Lastly, the setting in Sebastopol is stunning. Dr. Wise is incredibly informative and helpful. And my advice is to go ASAP. Also, if you have a significant other, take that person with you. The Stanford program will train your spouse or whoever to administer PT on you, so you can get on-going therapy from your loved one throughout your recovery. It's not hard to learn, and surprisingly not embarrassing. My wife has been doing PT on me for the past year, and she's way better than any local therapist, thanks to the training she received from the Stanford folks.

Best of luck.

[robertpagen]

I have been generally dissatisfied with the local therapists I have seen here in NYC. Even when they are nice people, I don't have the confidence that they know what they are doing. After going to one PT almost 20 times I asked her for a chart of my trigger points and she seemed to indicate she had none and she just reaches in and pushes around. She has been pretty careless at times, once even causing blood to be on her glove which did not have enough lube and caused a flare of ass ache which has so far lasted one month. She had the nerve to tell me it was a hemorrhoid(it was not).
If I had two weeks and a couple of thousand I would go to San Francisco.

[webslave]

I have not been to Stanford, but from all I have read that seems to be the very best thing a sufferer can do. I encourage anyone who can afford it to do it.

[robertpagen]

webslave, do you think I should be concerned about that blood that was on her finger. That session was one month ago, and I don't have blood in the stool . But the ache flare in my perineum is still there. I have decided to stop PT as when I look over my records for the last year. My symptoms are better and quality of life is better when I am not in PT. I see no correlation with symptom improvement from PT.

I hate feeling somewhat better and then having PT make me feel worse.

[webslave]

I wouldn't go to her again, that's for sure. See how you go without PT for another 6 months. Use Paradoxical Relaxation and avoid stress. If things have not improved significantly by then, consider Stanford.

[HuckFinn]

RobertPagen writes: If I had two weeks and a couple of thousand I would go to San Francisco.

In fact, the total cost is about $5,000. That includes the cost of the program itself, plus airline tickets for two (assuming your significant other accompanies you--which is very important to do if possible), a night's stay in Palo Alto to see Dr. Anderson, a rental car to drive the roughly 100 miles to Sebastopol, and six nights' lodging in Sebastopol. Needless to say, my health insurance company refused to chip in on any of the expenses, other than the Anderson costs.

Still, I'm thrilled with the program, enthusiastic about the outcome, and consider it money well spent. And I'm a self-employed guy without any company-sponsored sick days or other benefits like that to back me up. It was a financial hit, but way better than the somewhat smaller amount I had previously spent on a local urologist who misdiagnosed my problem as an infection and pumped me full of Cipro for months on end, which did more harm than good.

Had I not attended the Stanford/Wise-Anderson Protocol, I dread to think how bad off I'd be now if I'd stuck with the local urologists who don't know their head from their ass.

One final thing: Dr. Wise is very up front about the fact that the Stanford/Wise-Anderson Protocol is a slow fix, not a quick one. And he's right. You're looking at a time frame of one to two years before you get maximum improvement. Though there will be incremental improvement along the way, there's a lot of three steps forward, two steps back with the progress. Such is the nature of the ailment.

Best of luck.

[SickofCP]

Most of this dialogue deals with the PT side of the Stanford/Wise-Anderson Protocol. The important part of making the trip to California is to learn the relaxation techniques.