A Headache in the Pelvis Clinic

[LottaNerve]

I'm another one who fell for what was then called "The Stanford Protocol" ...
It's hard for me to believe that anyone would knowingly mislead chronic pain sufferers for profit. I thought David Wise was genuine and caring, but the further I get from the clinic, the worse I feel about it. I just hope more people don't spend their money and time buying the books and going to the clinic as I did. (I even bought a second copy when I heard that it included more information on women's pelvic pain and IC. I was disappointed.)

I was a patient of Dr. Christopher Payne of the urology department at Stanford from 2004 - 2006. Dr. Payne is highly regarded as an IC doctor and is on the advisory board of both the ICA and ICN. I went to him in 04, he examined me and gave me options - I decided on having a second hydrodistention, which he did in 2005. (My first hydro was at Sansum - Cottage Hospital in Santa Barbara in 2000) I also have all my records from my hydro and the letter from Dr. Payne which stated I had "refractory IC" (unresponsive to treatment) with the options he gave me.

Not long after my hydrodistention at Stanford, I read "Headache in the Pelvis" and found out about the "Stanford Protocol." I was baffled, even upset, that my own doctor at Stanford didn't even mention it as an option. Especially because he suggested I try physical therapy and gave me a sheet of paper with physical therapy clinics in California and there was NO "Stanford Protocol" or Wise-Anderson clinic on it. Neither did he discuss it with me.

Subsequently, I called the urology department and asked about the Stanford protocol and the clinic, and the receptionist had no idea what I was talking about. She took a message for Dr. Payne and I never heard anything back. So I was a little miffed and felt like my doctor was "holding out" on me! I thought maybe it was dept. politics, that Dr. Rodney Anderson and Payne were competitive or something. Boy, was I WRONG!

At any rate, I stopped trying to pursue the clinic through Stanford itself and called David Wise to schedule. My pre-clinic check-up was with Dr. Rodney Anderson, so once again we drove back to Stanford. It was weird going to Dr. Anderson's office, just steps away from my own doctor's office.

Dr. Anderson did a brief examination and said that it was too bad I had IC as the clinic wouldn't work for me!!! He suggested that I try the Interstim!!! I was shocked. The Interstim is a neurostimulation device implanted in the fat of the buttocks with leads to the spinal cord and it is not approved by the FDA for pain, which is my main symptom. It is for "Overactive Bladder" - urgency and frequency only. I also knew that Medtronic, the manufacturer of Interstim, had been implicated in a class-action suit for paying doctors to use their device.
http://www.ic-network.com/forum/showthread.php?t=24311

I had already been around and around with my local urologist on this one and could not believe I was hearing it from a doctor at Stanford, a world-class leading university hospital! I said as much to Dr. Anderson and he said that "sometimes" it does help with pain.
I pushed this discussion aside and got back to the clinic. Would it help me? He said it would help me, so I just took the paperwork and got out of there. In the car, my husband and I discussed what happened - how weird was that! - but we continued north with the plan. The clinic was further than we thought from Stanford - several hours north through winding roads in Sebastopol. The clinic was at the end of a long narrow road in a rural area, in a lodge-like building in the redwoods. I thought it was a peaceful setting, even if it wasn't the "clinic-like" facility I had expected. (Since then I understand it has been moved to a hotel in Santa Rosa.)

During the clinic, I asked for some private time with David Wise to discuss what Dr. Anderson had said. I thought from the description of the clinic that we were going to get some therapy as well, as Dr. Wise is a psychologist. He invited us to come to his office during breaks with questions or problems we were having. So I went to his office and knocked on the door. He let me in and offered me a seat and seemed very concerned when I told him what happened. He said, shaking his head, "I wish Rodney wouldn't do that." Then he assured me that, yes, the protocol at the clinic would definitely help me. At this point he was already rising to lead me out the door, and I was still asking questions. What about my IC? Would it go away? He looked in my eyes and PROMISED me that if I followed it faithfully, the relaxations, the physical therapy and exercises, that I would get well, even with IC, as it was all part of the same tense pelvic floor condition. He asked if I was working on my anxiety and I told him I had been listening to the Byron Katie CDs and even had them in the car.

Also, a word about the physical therapy we received at the clinic. We were told that Tim Sawyer, Dr. Wise's physical therapist, is the best and that no other PT can come close to the kind of treatment we will receive during the week. For over a year following the clinic I tried to figure out how I could get back to the Bay Area regularly enough to have sessions with Tim, so I could get the kind of therapy that would help me. We were also told we would be given a valuable tool -- a customized "map" of our pelvic floor and trigger points causing our pain. My "map" has never been used by subsequent PTs - it is just an outline of the pelvis with x's marked on it, without any kind of description.

Oh - and the amazing "tapes" that you receive at the end of the clinic to guide you through an entire year of paradoxical relaxation? They really ARE tapes - cassette tapes! Many of us asked if there was a way to get them digitally for our ipods, or at least on CD, but no, they were only available on cassettes. I thought it was strange that such a prestigious program, attached to Stanford, one of the finest universities in the world, would be using such outdated technology.

I have been in contact with members of my group since I had pudendal nerve entrapment surgery. They want information about PNE and about PNE surgery, which I am happy to provide. Most in our group have gone on to seek help from other sources; one has been to Mayo Clinic, for example; and others are continuing to seek diagnostic help. The main message is that we have all continued to be in serious, chronic, pelvic pain.

And that's my story ...

p.s. I wouldn't have a problem if the clinic had not been promoted as something that it isn't. If it were described as a "spa week" with relaxation techniques, meditation and physical therapy for chronic pelvic pain it would be different. But then I probably wouldn't have attended, and neither would the rest of us who were the victims of false marketing.

[shawnmellis]

Hi Charlie, I'm curious what medications you have tried in the past as well as what you think may have caused your PN or PNE? I think you said your medications did not help. I tried physical therapy only one time. I had 3 nerve blocks. I am taking Neurontin, diazepam, ibuprofen and Tramadol. I also avoid doing anything that may make my PN or PNE worse such as driving, walking a lot, sex, sitting, heavy lifting, etc and warm baths. I am pretty sure it is more rare for a man like us to have this condition, I am assuming that you are because of your name but I guess Charlie can also be a girl's name. It's hard to find support and help for this because it is so rare. At leaset, that has been my case. Anyways, just wondering if you have had any doctors recommend these medications and treatments and if you have had any pudendal nerve blocks and how long you have had your PN or PNE. Just trying to help. I have had it for 1 1/2 years now and I'm 36 now. I've gotten slightly better since 10 months ago, when I reinjured it. Take care. Never Give Up.

Shawn

[Charlie]

I am pretty sure it is more rare for a man like us to have this condition,

Shawn, I would perhaps disagree with you here. Admittedly many women seem to develop PNE or pelvic pain after pregnancy and post surgical problems also appear to be more common in women. However PNE is seen in male competitive cyclists and there are Drs that have put forward the theory that athletic activity can create PNE. Also men and women can both obviously have accidents that can trigger nerve problems or nerve compressions in the pelvis. There can also be genetic factors. All men and women have a pudendal nerve/dorsal nerve , they both have a sacro tuberous and sacro spinus ligament and an alcocks canal so the common sites of entrapment are the same. There are very few studies for PNE surgery itself though. There are so many varied, different causes of pelvic pain. I would also add that there are many nerves and muscles other than the pudendal nerve that can cause pelvic pain and all should be considered or investigated as a cause of pelvic pain.

It's good that you have started to improve, I hope it continues for you.

[Charlie]

David Wise has now sought the services of an internet marketing company. He is listed as an individual client on their website, providing patients with an insight into David Wise's motivation.

[Charlie]

In February this year the latest Wise Anderson Protocol study was published in the Journal of Urology. This study tracked patients that attended David Wise's clinic based at the Flamingo Hotel previously held at David Wise's home.

A video about the study is based on David Wise's website. The slide that appears on David Wise's website itself is shown below.



So it seems that the study proved a success for the Wise Anderson protocol.

However compare the title for the video with an analysis by Dr Krongrad a Urologist who treats prostatitis. (He can be seen on youtube here. http://www.youtube.com/watch?v=WQC2rKTG3i8)

Here is the analysis : https://prostatitissurgery.com/Physical_Therapy.html

as he concludes :



So it seems that the Wise Anderson protocol produces approximately the same effect that has been associated with placebo in a previous pelvic pain study. In fact if you were to go by medical studies pollen extract produces a greater effect than the Wise Anderson protocol. Pollen extract produced a drop of 7.5 points on the NIH Chronic Prostatitis Symptom Index and unlike the Wise Anderson study that study was a randomised,double-blind, placebo-controlled study so it has far less potential for bias than the Wise Anderson study.

http://www.ncbi.nlm.nih.gov/pubmed/19524353

- As the video on David Wise's website shows after 23 months of treatment the median average reduction in VAS pain scores ( pain on a scale of 1 to 10) dropped by one point from a 4 to a 3 out of ten.

- The median average reduction in NIH chronic prostatitis scores dropped by 7 points after 23 months of treatment. Note that although the slide states scores after 6 months of treatment the video makes it clear later on that the scores were 'sustained' at the 23 month mark. The study suggests that after 6 months of treatment patients experience no further improvement.

- 42% of the original sample of patients that attended the clinic were lost to follow up. Which begs the question would the results have been even worse had all the patients been followed up? This was also not an independent study and was neither a controlled or randomized study.

The most pertinent questions Dr Krongrad asks are

What is the clinical meaning of a CPSI score of 19? Are patients accepting of such symptoms?
What is the clinical meaning of a 7-point change in CPSI? Are patients satisfied with this?''

The average reduction in prostatitis scores as is shown on the video slide reduced from 26 to 19 after 23 months of treatment. A score of 19 is classified as Severe symptoms. Here is how NIH Chronic Prostatitis Symptom Index scores are classified.


http://www.prostatitis.org/symptomindex.html

So after 23 months of following the Wise Anderson protocol patients on average continued to experience 'Severe' symptoms. This is after 42% of patients dropped out of the study. So technically David Wise's website can say 82% reported 'some' improvement but what it does not make clear is that this result is taken after 42% of the original sample dropped out.

Are patients prepared to pay thousands of dollars for this treatment when the Wise Anderson study itself has shown such poor results?

In some respects David Wise deserves some credit for at least making an effort to track the results of those that attend his clinic as it seems most surgeons and physical therapists in this field make no effort to do this and are not publishing results.