Success Rate of the Stanford/Wise-Anderson Protocol

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Success Rate of the Stanford/Wise-Anderson Protocol

Post by webslave » Thu Jun 17, 2004 6:48 pm

In reply to a question about the success rate of the Stanford/Wise-Anderson Protocol, David Wise wrote:
David Wise wrote:Dear Mark,

While we often hear from patients as to how they are doing, we have had no support or resources to prospectively and systematically collect data on outcomes of patients that we treat. Simply seeing patients who are in pain in a busy clinical practice has allowed for little else. Recently we have become part of an 11-center study to evaluate treatments for pelvic pain sponsored by the National Institutes of Health (NIH). Our involvement in this NIH consortium should accommodate the prospective and scientifically vigorous evaluation of the efficacy of our protocol if indeed NIH gives approval for our specific protocol. In the interim, a retrospective analysis of approximately 150 patients treated at Stanford at various points in the development of our protocol is underway and should give us insights into improvement in quality of life associated with the decrease in pain symptoms.

Patients who have done well with our protocol have been more likely to have had pain for a long time and seem to have intuitively understood that their condition was not like a broken bone or a simple infection cured by antibiotics. They were open to what we offered them. These folks tended to have trigger points, which, upon palpation, in some way duplicated their symptoms. Furthermore, these patients demonstrated a very strong motivation witnessed by their full compliance with our protocol. Recently, I think we have seen better results with people who have read our book and who understand more fully the requirements of treatment.

The results of our treatment were less satisfactory in patients who did not have trigger points that reproduced their symptoms upon palpation, and/or if they were not willing to devote themselves to our protocol. However, some people who had very tight pelvic muscles did well even though they did not have specific trigger points that reproduced their symptoms.

There are other factors that seem to interfere with a good understanding of the results of our treatment. The use of narcotic medications may reduce the efficacy of our approach although we have had a few patients who have done well and continue to do well after having withdrawn from the narcotic medications. For those patients with other physical or psychological problems such as fibromyalgia, cancer, chronic fatigue syndrome, neurourologic disorders, schizophrenia and other psychotic disorders, injury to the spine, and pelvic related surgeries and procedures, our approach can still be helpful but the general efficacy is often, (though not always) mitigated.

Thus, the question of the efficacy is not a simple issue, as there are many factors associated with the resolution of pelvic pain. To summarize however, when there is no gross pathology, patients with typical CPPS symptoms in whom we can reproduce symptoms by palpating trigger points who are motivated to do whatever it takes, have the best results from our treatment.

Our approach has evolved over the past 10 years. I believe that the format of a 6-day intensive clinic or an intensive 5-6 day individual program is the very best format for teaching our method as it provides sufficient time for people to learn the home treatment. We also teach partners of patients how to do the myofascial trigger point release and this works quite well. From my observations, the least effective form of treatment delivery has been one in which patients are seen in a few brief office visits when only a small amount of time can be devoted to instruction in home treatment which is the core of our approach.

When we first thought about writing A Headache in the Pelvis, we discussed whether we should wait until a report of a prospective study of our protocol was completed before we wrote our book. We certainly could have waited. At that time, however, we had no assurance if and when we would ever receive any funding for such a study. Furthermore I knew that I personally would have been very grateful for a book like A Headache in the Pelvis when I was symptomatic, whether or not there were conclusive studies done on it or not. I felt confident that most other sufferers would feel the same way as I did. So we published the book.

Let me talk a little bit about "cure." Cure implies that you have a problem that a treatment simply eradicates. I do not think that the successful resolution of chronic pelvic pain syndromes means that they can never flare up. There was a time when sitting when I was out to dinner or at movie was agonizing, and driving my car even a little way, required that I sit inclined on one buttock. With gratitude, I sit here comfortably writing this letter without any pain. I do not however describe myself as being cured. I do relaxation every day and do my best to live a life in which I am not swept up in anxiety and a type A lifestyle. I believe that if I stopped doing relaxation, and went back to an unconscious, "˜burning the candle at both ends' lifestyle, which is my predilection, my pain would probably return. If I did have a flare-up, however, I would not consider it a bad thing or a failure but simply a wake up call to do what I needed to do to return to balance without symptoms.

In my view, sooner or later most people have their version of chronic pelvic pain syndrome, be it irritable bowel syndrome, constipation, anxiety disorder, low back pain, non-cardiac chest pain, headache, temperomandibular disorder or hypertension. The body is fragile. Different bodies respond to age and stress at different sites in the body. People with the kind of pelvic pain we treat happen to be pelvic responders. The point, in my view, is to understand how to live a life that quiets down or eliminates the symptoms. For a certain group of people with pelvic pain of the kind that we successfully treat, I believe there may be no permanent cure, only daily treatment of becoming inwardly quiet that keeps one essentially symptom free. The point is to be able to effectively deal with the tendency to tighten up the pelvis so that it does not interfere with your life and happiness.

Sincerely,

David Wise, Ph.D.
Last edited by webslave on Mon Nov 05, 2007 4:00 am, edited 2 times in total.

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Re: Success Rate of the Stanford/Wise-Anderson Protocol

Post by webslave » Thu Jun 17, 2004 6:54 pm

David Wise wrote:For a certain group of people with pelvic pain of the kind that we successfully treat, I believe there may be no permanent cure, only daily treatment of becoming inwardly quiet that keeps one essentially symptom free.
I think this is a key part of how I became symptom free myself. I came to this knowledge intuitively.

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Post by scotsman » Thu Jun 17, 2004 9:16 pm

Great piece from David.

I completely concur and relate with his closing paragraph. I get a lot of strength by believing that ultimately living a quiter life will give me a better quality of life health wise.

It's not always easy as my natural state up to now is having a very stressful work life and always burning the candle at all ends. It's hard to accept that I may not be able, health-wise, to lead that sort of life. I have been leading a quieter life since getting CPPS but I do miss the buzz that my 'former' life gave me.

Richard.
Not medical advice: Read my progress to date : Read about my W-A clinic visit

Age: 41 CPPS: 7 Yrs Recovery Status: 90% Symptoms: Pain around perineum Makes Worse: Tension, sitting Makes Better: Stretching, triggerpoint therapy, relaxation, Tramadol (50mg)

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Post by Richard.N » Thu Jun 17, 2004 10:21 pm

I get a lot of strength by believing that ultimately living a quiter life will give me a better quality of life health wise.
I totally second that. I've accepted that I'm not wired for the high flying career route I was in. I feel much better for quitting. It's a shame I have the aptitude but not the durability to cope. F*ck it. That's life :-D
Richard

Age: 39. | Onset Age: 30. Onset Date: January 2002. Symptoms (back then): Supra-pubic pain, back pain, urinary frequency, urgency and difficulty, weak stream, nocturia, (and variously) chronic fatigue, IBS. Current symptoms: more frequent than normal, but pretty much under control. Current amelioration: Xatral 10mg, Mirtazapine 30mg. | Worsened By: Stress, binge drinking, strained bowel movements, bloating, sitting on hard surfaces, jogging, and regularly - THE WINTER!

I'm not a medical expert. My comment is opinion. See your medical professional.

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Re: Success Rate of the Stanford/Wise-Anderson Protocol

Post by MastCells » Thu Jun 17, 2004 10:48 pm

Good comments from DW. I'm glad he agrees with the concensus this group reached in the "Define 'Cure'" thread.
This is not medical advice. Please consult your physician.

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Post by webslave » Fri Jun 18, 2004 12:47 am

Richard.N wrote:I've accepted that I'm not wired for the high flying career route I was in. I feel much better for quitting. It's a shame I have the aptitude but not the durability to cope. F*ck it. That's life :-D
I have the drive and motivation of an 800 lb gorilla in a 'roid rage :62_58_40: , but I have the nervous system and anxiety levels of a grandma with hyperthyroidism :paranoid:

The two aspects clashed terribly in my younger life, and my health was deep-sixed. Now I live with the consequences and so I've learned to be much gentler with myself and more philosophical about everything. :cool:

Ddream

Post by Ddream » Fri Jun 18, 2004 3:08 am

I appreciate Dr. Wise for taking the time to write that post and I agree with what he had to say. :thumbs_up:

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Post by alprost » Fri Jun 18, 2004 8:38 am

Great info once again from Dr Wise. I also think that leading a 'quieter life' is an essential part of promoting recovery from CPPS.
This is not Medical advice - Consult your Doctor!

Age:39. Age at onset:31. Symptoms prior to treatment: Golf ball in rectum, severe urinary frequency (2-3x/hr; 5-10x/night); weak stream; painful ejaculation; coccygeal pain; tip of penis pain; general pelvic pain on left; testicular pain; supra-pubic pain. Current | Symptoms: Urinary frequency 1x every 2-3 hrs and 1-2 x a night; mild pelvic pain on left hand side (all symptoms still improving!)
Helped by: Trigger point release; avoiding exercise; pelvic floor relaxation; Neurontin decreased bladder sensitivity somewhat. Worsened by: Exercise; frequent ejaculation; ibuprofen irritates bladder. Made no difference: Diet; biofeedback; quercetin; Steroid anti-inflammatories; Elavil.

****UPDATE*** I am now able to sit again at work all day, and can perform moderate aerobic exersise again for the first time in 8 years!!!

Please read:
viewtopic.php?f=37&t=808&p=3954
viewtopic.php?f=7&t=239&p=1158
viewtopic.php?f=37&t=248&p=1214

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Post by Richard.N » Fri Jun 18, 2004 11:22 am

I have the drive and motivation of an 800 lb gorilla in a 'roid rage , but I have the nervous system and anxiety levels of a grandma with hyperthyroidism
:lol: Type A-tastic!

I've been trying to temper my type A personality with a bit of T (adrenaline junkie). It certainly takes your mind off things, but now I find I'm damaging myself in other ways. Two sports injuries and the wrong kind of physio in six weeks!
Richard

Age: 39. | Onset Age: 30. Onset Date: January 2002. Symptoms (back then): Supra-pubic pain, back pain, urinary frequency, urgency and difficulty, weak stream, nocturia, (and variously) chronic fatigue, IBS. Current symptoms: more frequent than normal, but pretty much under control. Current amelioration: Xatral 10mg, Mirtazapine 30mg. | Worsened By: Stress, binge drinking, strained bowel movements, bloating, sitting on hard surfaces, jogging, and regularly - THE WINTER!

I'm not a medical expert. My comment is opinion. See your medical professional.

bti20

Post by bti20 » Fri Jun 18, 2004 12:50 pm

It is nice to see explicitly stated what has been concerning me a lot about the headache in the pelvis protocol: the fact that, generally, a cure is considered to be less of an erradication of the pain, but rather an adjustment to the pain that is so complete that the pain itself has lost all the meaning and connotations that it had before the adjustment. I don't know what percentage of people who would call themselves cured would mean cured in this sense of the word. But I was rather hoping for a cure that spares the personality that I have spent my whole life building up.

The headache in the pelvis protocol seems to me to be a conscious, and therefore sped-up and concentrated commitment to what is in any case the natural progression of CPPS: a gradual accomodation to the pain whereby the personality which made the pain so unbearable, and the pain, are diminished in parallel. I know 'diminished' is a strong word to use in relation to the personality-changing aspect of CPPS, but that's certainly the way I feel - diminished - after two years of it. Yes, the pain is better, but in my opinion the cost is too high: I hate the way CPPS has made me feel so dull, so I cannot explicitly accept that I will have to alter my life expectations (as it says on chronicprostatitis.com) in order to get better, even if this is an acceptance that is taking place subconsciously as I slowly improve with time.

In a way, there seems to me to be something slightly ludicrous about this sort of explicit surrender: it spares what is not wanted (pain and disruption) at the cost of what is wanted (personality); kind of like moving your whole house down the street because the neighbours are making a noise. I know this is putting the matter into extreme terms, but I am still holding out for a cure that allows me to retain all of my ambitions and personality traits. After all, people DO sometimes recover from pain in an instant (the noisy neighbours are hounded out). For some reason the people on this forum have found that the medical profession has been unable to provide any solution to what (in my opinion) is an isolated, discrete, problem: pain resulting from some sort of (reversable) dysfunction. It could be that we are a sample picked at random; more likely, there is something about our common personailities that makes medical professionals dismissive towards the pain; perhaps an excessive desire for involvement or proactiveness towards the condition which falsely hints at some sort of hypochondria.

Obviously, the healing process is more subtle than I'm making out, and people are getting cured by the headache in the pelvis protocol without turning into zombies, but when it comes to the crunch I am not ready to agree that a personality overhaul is a more sensible option than a sustained and concerted effort to locate and eliminate the source of the pain. If this means that, in the interim, my symptoms are worse, then I'm (currently) willing to accept that.

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Post by scotsman » Fri Jun 18, 2004 1:57 pm

bti20 wrote:.... a sustained and concerted effort to locate and eliminate the source of the pain
I'd say that 50% + of the Stanford/Wise-Anderson Protocol is doing exactly that, as what you describe is the PT involved in hunting out and treating the sources of pain.

I don't accept at all that the Stanford/Wise-Anderson Protocol is about accepting the pain. Everything is geared towards removing the pain but also ensuring that the type of stress/behavour that, in some of us, has brought on the CPPS in the first place is taken away. Otherwise all you end up doing is treating the symptoms and not the cause.

Also don't agree that anyone is talking about a 'personality overhaul'. We're talking about eliminating stress.
bti20 wrote:...but that's certainly the way I feel - diminished - after two years of it. Yes, the pain is better, but in my opinion the cost is too high: I hate the way CPPS has made me feel so dull...
Really sorry to read that this has effected you so badly :sad:

Richard.
Not medical advice: Read my progress to date : Read about my W-A clinic visit

Age: 41 CPPS: 7 Yrs Recovery Status: 90% Symptoms: Pain around perineum Makes Worse: Tension, sitting Makes Better: Stretching, triggerpoint therapy, relaxation, Tramadol (50mg)

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Post by webslave » Fri Jun 18, 2004 5:00 pm

I agree with Richard's statement above.

BTI20, I don't feel diminished from what I was years ago. But, at the same time, I know I cannot do the sort of high-stress job I was doing years ago, and nor would I want to, any more.

A propensity to develop pelvic myoneuropathy is a genetic flaw we share. There is nothing you can do about that: you may as well get angry for having hay fever or brown hair!

Seek out a lifestyle that is not stressful to you personally. You can still be creative and productive.

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Post by Richard.N » Fri Jun 18, 2004 5:14 pm

I am not ready to agree that a personality overhaul is a more sensible option than a sustained and concerted effort to locate and eliminate the source of the pain
I think it's just the obssessive part of the type A personality that needs to be worked on. I certainly don't feel any different for avoiding stress. Just...less stressed.

Is personality soley contained in the way you work towards your goals, or is it also in the goals themselves and in the other parts of your life? If you can stand the compromise of working towards your goals in a slightly different way, it could make a difference.

Speaking of obssessive behaviour, I've edited this about 10 times... :shock:
Richard

Age: 39. | Onset Age: 30. Onset Date: January 2002. Symptoms (back then): Supra-pubic pain, back pain, urinary frequency, urgency and difficulty, weak stream, nocturia, (and variously) chronic fatigue, IBS. Current symptoms: more frequent than normal, but pretty much under control. Current amelioration: Xatral 10mg, Mirtazapine 30mg. | Worsened By: Stress, binge drinking, strained bowel movements, bloating, sitting on hard surfaces, jogging, and regularly - THE WINTER!

I'm not a medical expert. My comment is opinion. See your medical professional.

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Post by scotsman » Sat Jun 19, 2004 9:00 am

Richard.N wrote:Is personality soley contained in the way you work towards your goals, or is it also in the goals themselves and in the other parts of your life? If you can stand the compromise of working towards your goals in a slightly different way, it could make a difference.
Richard, it might have taken you 10 goes :tongue2: but nicely put :simsim:
Not medical advice: Read my progress to date : Read about my W-A clinic visit

Age: 41 CPPS: 7 Yrs Recovery Status: 90% Symptoms: Pain around perineum Makes Worse: Tension, sitting Makes Better: Stretching, triggerpoint therapy, relaxation, Tramadol (50mg)

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