major disagreement on therapies in particular traction among top experts

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gobbler

I noticed in my own experience having visited at least 5 doctors in total and every described expert on the matter has a different opinion. Should it in such a highly scientific field bot be the case that everyone is on the same line and orientates themselves on the most recent research papers? In particular I have found major disagreement in two areas:


recommended therapies:

in recent years, more and more studies have come out supporting in particular the idea of traction therapy to reduce curvature and in particular regain length with traction devices.
Dr Trost is a strong supporter of traction therapy as the conductor of the Restorex studies and developer of the device itself. On the other hand on this very forum, Dr Eid, another well known specialist states in response to a question on this forum:

QuoteI have not had any luck with traction devices or VED to increase or restore size. I believe that if these devices increased the length of the erection, that almost every men in the world would be using them. I do not recommend them before an implant. Again no data is available that documents that one can obtain a larger erection with an implant if a traction device is used prior to the implant procedure. Wishful thinking!

so basically contradicting this entire subsection of the board. I do not know what standard is used but it seems to me that restorex studies are randomized placebo controlled trials and this should be accepted as evidence, evidence and data Dr Eid suggests does not exist. Another strong proponent of traction is Dr Levine who has also done studies on the matter albeit less controlled and reputable ones, he still suggest there is strong benefit in doing it.

in my own experience about half of doctors say its a good idea to try, however, the other half says it might actually make things worse, cause reinflammation, more scarring just like pulling up an open wound over and over again. These are all androgloist who specialist in this field and should be aware of the most recent literature so why doesnt it seem like there is much common ground here?


can peyronies reoccur over ones lifetime:

i have seen multiple doctors and probably again half of them said that peyronies can only happen once in your life, that it is an auto immune disease where the body overreacts to a micro injury with excessive immune response and thus scarring but that it is then learned to not react the same way again. others say that is not true, has no basis and that they have in their own practice seen patients who have gotten it over and over again over the course of a few years.


the bottom line is, as a patient, what should I actually take as scientific fact, who should I trust? it is already quite hard to find a doctor who is not completely ignorant about peyronies which is fine because this is a highly specialized field and most urologists do not see many patients with this condition or have specialized in other areas. however among those who did focus on this aspect of andrology and mens health, how can there be such major disagreement on such core concepts and treatment options?  
diagnosed with peyronies disease in Feb. 2020
mid 20
tried VED without much success, Cialis and potaba
single

Sebtp1973

I saw that comment by Eid. I interpret it to mean he believes traction can add to stretched flaccid length, but not erect length. It seems to me though, stretched length shows you the capacity of your erection. In other words, when it fills with blood during an erection, that's as long as it can get. So if you can increase the stretch length , you can increase erection length.

Traction along with Xiaflex seems to work quite well in reducing curves. I'm still not sure the mechanism. Does traction cause cells to split, thus creating new healthy tissue? A curve occurs when one side is shorter than the other, and in this theory, the new healthy tissue is making the shorter side longer. Or is one side shorter (thus causing a curve) because plaque is more compact and less flexible, thus not letting that side expand as much during an erection. And xiaflex softens the plaque shortly after the injections, and traction stretches the plaque, and can break it up into pieces, causing the erection to expand more on that side.
57 yrs old.
Pre-Trost treatment, 110 composite curve (75 up, 35 left)
Post-Trost xiaflex treatment, 0-15 degree curve.

Bud luck

Gobbler, I think every man penis is different, what it works for one it can make it worse for the other. In my case everything I tried it made it worse, after more than 3 years is still getting worse, now I have torsion, narrowing, increased in lateral deviation coming from the bottom of my penis, my penis is deteriorating and can't do nothing to stop it, but for other guys traction did work.
My first symptoms started early in 2019
I tried Traction device, Pentofixiline, Q10, TRT, L-Argenine, cialis
I have narrowing/dent/hinge on the left side of my shaft
My ED is getting worse
Had a PRP shot Aug 2021
I have a girlfriend
Age 46

Sonic

Quote from: Bud luck on September 03, 2022, 08:43:27 PM
Gobbler, I think every man penis is different, what it works for one it can make it worse for the other. In my case everything I tried it made it worse, after more than 3 years is still getting worse, now I have torsion, narrowing, increased in lateral deviation coming from the bottom of my penis, my penis is deteriorating and can't do nothing to stop it, but for other guys traction did work.

Sounds like your only option left is an implant. To be honest it's quite frightening. My situation started as you can see in June 2020, over 2 years now as something very mild. My curve itself still is not that bad however the narrowing at the base has progressed, erections have instability, like no matter how hard I am there's always a softness to them. I am thinking about trying a SomaCorrect but honestly can't believe I am even saying this but I am now considering an implant, at the age of 29...
30 years. Sudden rightwards curve detected in June 2020
Narrowing on right side and about a 20° curve to the right.
ED + instability due to narrowing.

Bud luck

Can't do an implant, so I'm not having penetrative sex anymore, I just masturbate.
My first symptoms started early in 2019
I tried Traction device, Pentofixiline, Q10, TRT, L-Argenine, cialis
I have narrowing/dent/hinge on the left side of my shaft
My ED is getting worse
Had a PRP shot Aug 2021
I have a girlfriend
Age 46

Sonic

Quote from: Bud luck on September 05, 2022, 02:10:06 PM
Can't do an implant, so I'm not having penetrative sex anymore, I just masturbate.
What ís preventing you from getting one?

Tough situation to be in. Urologists in my country are completely clueless not a single one of them have made my situation any better.

This forum has helped more than the ''doctors'' over here..
30 years. Sudden rightwards curve detected in June 2020
Narrowing on right side and about a 20° curve to the right.
ED + instability due to narrowing.

Bud luck

I just can't, the implant is not an option for me, but the implant has been a great option for many men.
My first symptoms started early in 2019
I tried Traction device, Pentofixiline, Q10, TRT, L-Argenine, cialis
I have narrowing/dent/hinge on the left side of my shaft
My ED is getting worse
Had a PRP shot Aug 2021
I have a girlfriend
Age 46

Hawk

I think Dr. Eid's statement is completely true.  I, too, know of NO DATA that establishes men who use traction can get a bigger implant.  Why??  Because that would be a very difficult study.  How would you ever know what implant they would have gotten vs the implant they received?  Also keep in mind that the vast majority of men who get implants do NOT have Peyronies Disease.

I do think the evidence is clear that traction can reduce the curve on a patient who has Peyronies Disease.  Reducing the curve lengthens the short side of the curve, so clearly increases length.  Even beyond the reducing curve, traction can and has increased length and girth in men with Peyronies Disease and probably (but no clinical evidence) in men without Peyronies Disease.  Even implant surgeons will admit that sometimes a man gets a larger implant after a revision even with the same surgeon.  Is this always because they were shorted the first time, or did the internal traction increase size?  There are no studies to say for sure, so we can say - No data is available.  Could you look at available data showing men with Peyronies Disease regain length, and extrapolate that those men might receive a bigger implant?  You could, but extrapolation assumes "if A is true then B is likely."  Most scientists and doctors hesitate to do that.

We see that, technically speaking, the statements are NOT in conflict.  They are statements on different sets of data.
Prostatectomy 2004, radiation 2009, currently 70 yrs old
After pills, injections, VED - Dr Eid, Titan 22cm implant 8/7/18
Hawk - Updated 10/27/18 - Peyronies Society Forums

Bak

I think the main problem here is that doctors and scientists have not fully understood this condition/disease yet. There is no scientific agreement on what works and what doesn't.

One of the main reason it is the fact that the majority of the studies are not conducted with rigor and scientific method: what I mean is that in many studies patients are often not homogeneous in many features (age, size of the plaque, curvature angle, etc...) and in most cases these studies do not use placebo controls or other types of controls at all.

On top of this, there is the fact that many studies are paid by pharma companies which promote certain product/therapies/devices etc...

In the case of traction therapy for instance, there is no study which proves the use of traction only vs no traction at all with patients monitored over time, with ultrasound checks done monthly (to check for the status of the plaque and potential new injuries caused by the device), and with dynamic measurement of the curvature (with erect penis). At least none I am aware of.

The above situation produces no agreement among doctors and scientists. The whole field should shift towards more rigorous scientific studies.

BTW... Dr. Trost studies are not with randomized placebo effect unfortunately, another example of a series of studies which could have been done in a more rigorous fashion.





39 yo. Peyronie's disease, first diagnosed around May 2021. Initial curvature around 55-60 degrees. Tried Xiaflex injections (10 in total) + RestoreX for over a year. Curvature has not changed. I got a new pump/indentation from using RestoreX

Bud luck

Some Urologists say that traction is dangerous and cause more damage, but others say that traction is the "best" therapy for penis fibrosis/plaque/curvature, how is possible to have such a extreme opposite views? Why there are not scientific studies done on traction?, is it traction really safe?
My first symptoms started early in 2019
I tried Traction device, Pentofixiline, Q10, TRT, L-Argenine, cialis
I have narrowing/dent/hinge on the left side of my shaft
My ED is getting worse
Had a PRP shot Aug 2021
I have a girlfriend
Age 46

FlatteningTheCurve

I know how confusing and frustrating it can be to navigate the different advice you get from various specialists.

I think the unsatisfying answer to why there is not more of an agreement between urologists is that 'it depends'. What I mean by that is that there are so many different factors that need to be taken into consideration both in terms of the patient's condition and in terms of defining improvement.

Yes you can measure a curvature, use an ultrasound machine or have the patient complete a survey where they score how they perceive the curve and their symptoms, but none of these provide an exact result, more something that is 'good enough' to decide on a treatment.

Moreover, like bak says, Peyronies is relatively under-researched. The reasons for this might be plenty, but one of them is that it is difficult for researchers to secure funding for studies on it. Compared to MS, Alzheimers, diabetes, various forms of cancer etc., Peyronies is not exactly at the top of the list.

With respect to all urologists and specialists treating Peyronies Disease out there, a third reason is that if you look beyond studies, urologists are likely to base their advice on what has worked for them first hand and their patients in the past. If you are a specialist that has focused on implants for decades, you are likely prone to suggest implants. If you are mainly focused on traction or Xiaflex you will most likely recommend that and so on. When I first got diagnosed, urologists in Sweden kept insisting on me having surgery because that was what they could offer and had experience doing as a treatment for Peyronies Disease.

In other words, depending on what a urologist can offer and their expertise, you are likely to get different answer from some. This is not me being disrespectful to urologists, I am sure they do their best to provide the best treatment that they see fit. That is why this forum is blessed with having two very experienced specialists with different areas of expertise providing advice to members

What I would recommend, if you have not already, is reviewing the guidelines for US and European urologists that have been shared previously: https://www.peyroniesforum.net/index.php/topic,14782.msg133161.html#new

What is good about these is that they have been collectively agreed upon by a network of urologists who are not trying to sell you anything or blow their own horn. Rather, each of them are supposed to be as an objective of a guide as possible. This is more recommendations in terms of 'based on a number of scientific studies, at least we can say this about X treatment'.

These are just my two cents.
Early 30s, diagnosed with Peyronies in 2017 after trauma during sex. ca 15 degrees upward curvature. Restorex, VED, 5mg Cialis, Pentox, L-arginine, Coq10, Propolis, Vitamin E. Underwent 12 rounds of Verapamil injections 2021-22