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Author Topic: MikeMatts angry post- has some validity  (Read 309 times)

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howtheheck

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MikeMatts angry post- has some validity
« on: December 22, 2021, 09:35:35 PM »

I get that his attitude was wrong, and everyone's response was focused on his negative comments.  However, I have often thought similar.  If you look at the Survival Guide, it was posted in 2013.  Maybe an update would be good?  We can still make it positive by saying:  that although the Urologists associations both in Europe and USA do not officially recommend Pentox, and other supplements, we have had antidotal evidence on this site of improvements and should be considered an option.  Maybe even more updates of how traction has helped or new studies.  I think Dr. Trost has stated he has finished some new studies recently, if they are published maybe we can add links.  VED is still strongly recommended by EU doctors, etc. 

I would be willing to help more on verbiage to update if it is deemed feasible or needed by the moderators.  Just my thought only, and I am ok with it still staying the same if that is what everyone wants.
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56 years old.  Westerner (Expat) living in China, Single, 4/21 start. Various natural topicals & orals, will use home ESWT machine.  05/24 started TCM with TCM herbs acupuncture.  06/02/21- Restorex, also noticed slight dorsal curve late 06/21

FlatteningTheCurve

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Re: MikeMatts angry post- has some validity
« Reply #1 on: December 26, 2021, 10:59:32 AM »

Hey,

Yes, I think you are taking a very constructive angle on what mikemat was saying, which is admirable!

I am all in favour of updating the content on the forum so that is reflects current general trends and scientific evidence as much as possible. I definitely read a lot about Peyronies Disease and actively seek out information that is not in the survival guide and try to share it whenever appropriate and it is difficult to decide what should be included there and not. I guess there are a few points to discuss before the survival guide is updated:

1) Is there a need to update the content of the survival guide specifically? Has any new generalisable evidence emerged that should be shared there rather than elsewhere? If you are looking for scientific evidence regarding treatments for Peyronies Disease or anecdotal evidence, there are plenty of resources and posts available elsewhere on the site, but is it better to include it in the guide?

2) If there is a need, what new evidence should be included? Who decides what to include? I guess Hawk or other moderators might be up for taking the lead on this but it is still worth raising as a potential issue.

3) If it is more about the wording or format of the survival guide (more links etc.), this can also be tricky as each member is likely to have their own opinion on this. I guess links can be added to different sub-sections of the forum, e.g. the resource library to a greater extent, rather than links to publications as these can disappear over time.

Again, I am all in favour of keeping content up to date but it is always easier to request something rather than implement it. Would love to hear what other members have to say regarding this as well.
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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. Currently undergoing 7/12 rounds of Verapamil injections

Hawk

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Re: MikeMatts angry post- has some validity
« Reply #2 on: January 05, 2022, 09:36:13 PM »

I appreciate the interest but for clarification, the Survival Guide was initially posted in 2013 but it certainly is not static.  It is a living document.  It has been updated within the last couple of months. When I update it I do so by editing the original document therefore it keeps the original date.  If I were to copy the content to a new document and delete the original it would result in MANY broken links on the forum and elsewhere on the internet.  These links need to be maintained.
 
The survival guide is an important first read to get members up to speed on the terminology of Peyronies Disease, definitions, finding a doctor, initial treatments they can consider NOW.  It is NOT intended as a textbook on Peyronies Disease or an advanced guide.

We do not put links about traction and VED usage etc. in the guide because we have entire boarts that focus on those topics.  If we made the guide 8 pages long no one would read it.
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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

Mikel7

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Re: MikeMatts angry post- has some validity
« Reply #3 on: January 06, 2022, 05:59:56 AM »

It is a living document
 
The survival guide is an important first read to get members up to speed on the terminology of Peyronies Disease, definitions, finding a doctor, initial treatments they can consider NOW.  It is NOT intended as a textbook on Peyronies Disease or an advanced guide.
  Well stated and this should be stickied inside of the survival guide for future readings.
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Lump April 2020, age 60 , Dr Levine 6-26-20,
Dorsal Curve 11-1-20 , Peyronies
Vit E400mg, COQ10, ALCAR, Heat Therapy, Penimaster, Pentox, Cialis
had SNHL 7-31-20 - Stopped all Meds because ototoxicity  Heat/traction/VED are working.

FlatteningTheCurve

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Re: MikeMatts angry post- has some validity
« Reply #4 on: January 06, 2022, 06:11:03 AM »

Thanks for the clarification Hawk, that approach makes perfect sense.
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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. Currently undergoing 7/12 rounds of Verapamil injections
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