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Author Topic: Book Review - Understanding Peyronies Disease - Dr. Levine  (Read 9531 times)

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Hawk

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Book Review - Understanding Peyronies Disease - Dr. Levine
« on: September 24, 2007, 08:53:42 PM »

Book Review – Understanding Peyronie’s Disease

Understanding Peyronie’s Disease by Dr. Lawrence Levine and published by Addicus Books.  It is now released for sale.  The cover price is $19.00.

I want to preface this review by saying this is solely my best attempt at a fair, balanced review.  In addition to reading Dr. Levine’s book from the perspective of a well studied patient of several years, I also tried to read it through the eyes of a new patient still reeling from the initial diagnoses and uncertainty that we have all lived.

This 160 page paperback book is laid out in question and answer format with thorough but easy to understand answers that avoid clinical language many readers find intimidating.  This book organizes these questions and answers into 12 chapters within 3 units (parts).  These units are: Overview; Non-Surgical Treatments; Surgical Treatments.  There is a 50-60 word glossary.  The book also includes an index that helps to quickly reference information contained in the book.

I found this book very easy to read and could not help but think how desperately I needed a resource like this book when I was first diagnosed.  It fills in the blanks of the questions you wished you had asked the doctor during your visit.  The truth is, with the limited knowledge of many urologists, this book supplies a lot of information that many doctors just do not have even if the patient had asked.

In this book by Dr. Levine, we can finally say there is a patient’s medical guide book that can be instrumental in helping patients make informed decisions about treatment.

I do have a few observations about what this book is and what it is not.  This book is not an exhaustive book on clinical details or research on the processes involved in Peyronies Disease.  It is not about theorized methods of treating those processes.  Even on topics like the cocktail of Pentoxifine, arginine, and Viagra, which Dr. Levine uses in treating his patients, the explanation is brief, straightforward, and can be summed up with: these drugs could also have some benefit in increasing circulation and in the case of Viagra reducing scar tissue formation as demonstrated in some rat models.  This is not a book for those looking for cellular explanations of disease, treatment, or theory.  Its power is in its simplicity and its straight foreword approach.

I specified that this is a patient’s “medical” guide because it lacks more than a passing reference to the psychological aspects of this disease.  A chapter by a leading psychologist grounded in the treatment of sexual problems would have been a welcome addition. We still await a book that addresses what is fully half of the battle that a Peyronies Disease patient and his partner must wage.   I also note that this book has a resource section to provide patients with contacts and sites that may help in their struggle.  I was disappointed that largest group ever to be associated with that struggle was omitted from Dr. Levine’s reference section.  I believe patients looking for support, and the psychological grounding not provided by this book would have been well served with a reference to the Peyronie’s Disease Society along with our web address

Dr. Levine is to be commended for a very good book that would be of value to a patient at any stage in his struggle. This book represents just one more contribution from Dr. Levine in the fight against this disease.  He sets the example of what we sorely need more of in order to win this battle.
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Liam

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Re: Review of Book Review - Understanding Peyronies Disease - Dr. Levine
« Reply #1 on: September 26, 2007, 06:12:41 AM »

Well written Hawk.  Dr. Levine (of FastSize® fame) is a well educated man with good information in his book.

The book is a good starting place for a person who has Peyronies Disease, a few extra dollars, and enjoys reading.  However (you knew that was coming), all the information could have been learned by starting here, following links provided on the forum and hitting Google a few times.  Dr Levine does not offer any miracle cures either. 

Dr. Levine should have mentioned (by name) the largest patient sponsored self help group for Peyronies Disease in the world, IM(not so)HO ;)

I think I'll write a book "My Life With Peyronies Disease".  I'll give you a good plug, Hawk.

BTW, Chapter 9 will be titled "Bubba - Lizards and Alligators"  ;) :) ;D
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"I don't ask why patients lie, I just assume they all do."
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Tim468

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Re: Book Review - Understanding Peyronies Disease - Dr. Levine
« Reply #2 on: September 26, 2007, 07:32:36 PM »

Hawk - good and fair review.

His book is a fair and accurate portrayal of the current state of the art in Peyronie's Disease management. It is already sort of out of date about the role(s) of testosterone deficiency in promoting fibrosis of the tunica, and in discussions of the role of TGF inhibition and NO production in newer (and perhaps novel) ways of treating fibrosis. It does not discuss in enough detail the autoimmune function that might play a role in Peyronie's Disease, but then, not that much is published or known about this part of the puzzle.

What saddens me is that so little really helps. The "known" remedies simply do not work, or barely work, better than placebo. Many have been very poorly studied and not in a controlled fashion. The latest travesty masquerading as "research" is the publication that showed that only 18% of patients got better on Verapamil, whereas 22% got worse, and the rest made no change. In total, 82% got no better or worse, and the title was something like "Intralesional verapamil prevents the progression of Peyronie's disease.". Controlled? Nope. Just a series of patients treated in a clinic. Better yet, the senior author wrote in an article written months earlier that, for untreated patients: "All patients who reported penile pain had improvement and 89% reported complete resolution (of pain) at followup. Of men with curvature 12% had improved, 40% remained stable and 48% had worsened at followup."

So this shows that 12% of men without treatment are better at one year, and 18% with verapamil treatment are better at one year. And we are supposed to trust this crap?

That is what passes as science in this field. It is an embarrassment (or it ought to be), and yet, surgical repair is still held out as the single best solution. That leaves alone the matter of whether or not the patient has a stable process or one (like mine) that has been gradually progressive over time. If someone had taken a nip or tuck in my penis years ago, it would simply be leaning a different direction now. And yet, the urologic community has yet to devise an algorithm to help the practitioner (who most of us will meet in our daily lives) to decide who should get which treatment.

So the book is honest enough. It is unfortunate that it misses an opportunity to recognize the new reality of medicine - that patients will seek help through the internet for better or worse, and that this organic process of patients learning from each other is changing the face of all of medicine. Look at one orphan drug, perfinidone, used for treatment of pulmonary fibrosis. Because the people benefiting from this drug (not yet "proven" in clinical trials) were able to network through the internet, a class action suit brought against Intermune (who make an alternative treatment for IPF, and who purchased the rights to perfinidone simply to suppress research on it) worked. Perfinidone is now back in Phase 3 studies, and helping those with the disease. This was completely because of the ability of those being treated with it to band together through the internet. We are going to see this more often - the understanding of patients forcing faster shifts in research by Pharma.

So I do regret the neglect of our very own site, and instead naming of a dead site that is quite inactive. It does a disservice to the community of men who read the book, and it devalues the information whenever those of us who know the territory recognize the erroneous nature of even one part of a book.

Tim
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52, Peyronies Disease for 30 years, upward curve and some new lesions.

Angus

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Re: Book Review - Understanding Peyronies Disease - Dr. Levine
« Reply #3 on: September 27, 2007, 05:48:25 PM »


    Well written verbage, Hawk. I agree that the process of seeking help on the internet is changing the way people review options on how to proceed with getting help with an ailment. It is a shame that more valid informational resources (our forum, among others) were not mentioned in the book. People's actions follow their interests and personal agenda, and I'm sure Dr. Levine's reasons for omitting our site and including others follows his personal agenda and interests, whatever they may be. We may never know why we were omitted; all we have at the moment is us and this forum; we need to keep this invaluable resource alive and well.
   No one is going to do what we do but us and this forum, at least with tenacity, and we're doing that task quite well considering we're a collection of men and women scattered about the globe who communicate with the written word. We shall persue OUR agenda with tenacity, with or without the endorsement of the medical gentry, for now.
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ninjagaiden

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Re: Book Review - Understanding Peyronies Disease - Dr. Levine
« Reply #4 on: September 28, 2007, 04:16:35 AM »

Dear All,

I wish I were in the US and could have an appointment with Dr Levine... because when I started looking for answers, I fell upon the peyroniesassocation website, where I could see his picture, ok...But to me the only thing that website brings is the FAQ (questions among which is ommitted the Very frequently asked question: "Why me, doc'?"  ;)  ). But apart from the general stuff, it seems like a dead website to me.

I enjoy reading, but I have no extra $$$ to spend on stg that won't bring me more than I know already. I might be biased, but from what I read from you, this book doesn't bring much on the table... So I'll skip the 160 pages read.

I'd like to meet dr Levine cause he seemed like one of the only surgeons that cared (at least in my mind when I looked on the web), but disregarding this website is really unbelievable. The peyroniesforum is the only site I'm trusting, and even if it can't give me miracle cures, at least it gives me hints on what is a risky or safe method to treat that problem a little.

I think docs won't tell if it hurts as long as the treatment is indeed agreed by such or such medical commission and that it's expensive.  I'm a bit pessimistic about the miracle cure, because I know that for every disease that makes money, there are people to prevent or slowen the research and release of new and effective treatment. Please keep this forum active and under control (I know Hawk is The Man for that job), for one main reason: the other websites are not worth a penny. Ok, I'm a bit tough on that point...

BTW, Hawk, if you need a donation, tell me, and I'll send you the extra $$$ I saved on the book and miracle drugs because this forum is priceless. (And it's not a joke, I wouldn't mind sending money to help you pay the expenses)

After seeing that the peyroniesforum is not in the "links" of the peyroniesassociation and on the wikipedia page, I'm wondering why the FBI hasn't arrested Hawk yet, because apparently this forum is considered as some dangerous, subversive group of people, since no one wants to hear and speak about it  ;D  I'm afraid god might strike me with lightning if I spoke about this forum around me... ::)
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LoveMyHusband

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(book) "Understanding Peyronies Disease" By Laurence Levine- thoughts?
« Reply #5 on: December 12, 2008, 06:24:00 PM »

I just got this book today, just skimming through it, It appears that he feels traction devices are of more importance than Vacuum Devices in the treatment of Peyronies, and I would like to hear your opionoins on this .    What books do you all recommend for Peyronies?    ???
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Tim468

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Re: (book) "Understanding Peyronies Disease" By Laurence Levine- thoughts?
« Reply #6 on: December 13, 2008, 10:19:39 AM »

For those who prefer to have a book, instead of looking for information on the web, I think that Levine's book is fine. It of course reflects his biases (for instance he has done a study of the FastSize ddevice but not a VED) - but overall I have heard good stuff about it. I looked at parts of it through GoogleBooks, but have not purchased it.

Tim
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52, Peyronies Disease for 30 years, upward curve and some new lesions.

ComeBacKid

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Re: Tim
« Reply #7 on: November 08, 2009, 11:55:03 PM »

Tim,

I realize this post is from awhile ago, but I just saw it  ???   I to don't know why more focus has been on the VED, or a combination rotation of the two.  The VED gives the full penis a good girth stretch and slight length stretch.  For one who seems to have plaque around their penis like a "cast" the VED provides a perfect stretch. I'd like to see a study done on the VED, is there any we know of done by any high profile urologist ?
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newguy

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Re: Book Review - Understanding Peyronies Disease - Dr. Levine
« Reply #8 on: November 09, 2009, 09:39:08 PM »

I hadn't seen this either. Thanks for bumping it up :).
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