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Author Topic: New,just visited 4 urologists and 1 MD!  (Read 670 times)

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Spika

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New,just visited 4 urologists and 1 MD!
« on: May 06, 2017, 12:26:21 PM »

Hello all,

65 yo, all my life I had an upward bent of about 10 degrees.
 Never bothered me, or any of the women (quite a few) of my life.
Never heard the word Peyronies up to last December 2016 when over a period of about a month or so ( I was down with the flu-no erections) it went from 10 to about 65-70 degrees!!! My word FLIPPED!!! I went ballistics!
I had sex with my wife without letting her know the problem( she usually "plays" with my penis before penetration, but this time I did not let her do it).Sex was good as usual. then I told about  the problem.She was very-very  supportive. She said "it does its job" it does not bother me -she kind of like it-, but if it bothers you we will take care it, don't worry I LOVE YOY...."
Several more times sex since...no problem...but I HAVE the problem ...I want back my 10 degrees penis, ok I will settle for 15
to 20.
Plaque palpable 2 x 2 cm about.

Urologist#1 said "Nothing you can do learn to live with it"
Urologist #2 said "Xiaflex".
Urologist #3 said "plication surgery"
Urologist #4 (Elliot L.) in Southern California  associated with a  Stem Cell clinic proposed a treatment that consists of:
                                  1- Shockwave treatment 2-Stormal Vascular Fraction (stem cells from fat), 3-Platelet rich Plasma
Doctor (MD) #5 Alternative medicine, regenerative  medicine "I  think PRP  will do almost as good as stem cells)
(Urologists 1 and 3 are with Kaiser)
I have not decided what to do yet...
Currently I am only taking Pentox, L Arginine , Acetyl Carnetine, Vitamine E (per the forum basic treatment)

I have spend countless hours researching  Peyronies... and this forum.
This forum is blessing, wealth of info here. Congratulations to the administrator and moderators!

I have tried with no luck to get in touch with someone at Mediwound, but I did manage to speak with someone at Birchbiomed
(both have done Phase 1 trials, ready for Phase 2. Both a few years away to the market). I will send a PM to the administrator about that. We may have something here...(not right away though)

In the meantime...did anyone do Urologist#4 , 3 steps stem cell  procedure lately???

Your reply would be appreciated!

Talk to you soon...

Your other similar post removed by moderator. Please read the forum rules.
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Jonbinspain

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Re: New,just visited 4 urologists and 1 MD!
« Reply #1 on: May 07, 2017, 02:03:14 AM »

Uro #1 forget!..

Xiaflex is a possibility. However results seem to be mixed. It's expensive and their are no guarantees. If it doesn't work, it doesn't work.

IMO, plication is surgery from the dark ages. Others may disagree. There are other more advanced forms if surgery which you can read about in that section. It is the one method that will give you a straight, albeit shorter penis, back. Some methods will however minimize the length loss.

Other methods that you have mentioned are all pretty new. What the costs are. What the success rates are, I'm not aware. But it's something you should investigate thoroughly before making any decisions.

At your age - I'm similar age - you want a fairly rapid solution, I'm guessing?
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Christopher1

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Re: New,just visited 4 urologists and 1 MD!
« Reply #2 on: May 07, 2017, 09:22:12 AM »

I would go from least invasive to invasive.

Depends how much money you have though. PRP and stem cells are expensive.

QuackAttack

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Re: New,just visited 4 urologists and 1 MD!
« Reply #3 on: May 07, 2017, 09:48:40 PM »

Spika,

Go with either Xiaflex or PRP. I've gone through 4 cycles of Xiaflex and have seen 15-20 degrees of improvement. If you go forward with this treatment have your URO send you home with a roll of Coflex to wrap your penis for several days to keep the swelling down. Also, I found that the Neomax Gold Magnet from Lyon Legacy kept all swelling and most bruising down during my last cycle. Wrap the magnet in the Coflex and leave it there.
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pepethefrog

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Re: New,just visited 4 urologists and 1 MD!
« Reply #4 on: May 07, 2017, 11:26:03 PM »

Really shows the lack of uniformity of knowledge in the field when it comes to peyronie's treatment!
Hope you keep us updated on your experiences
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Jonbinspain

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Re: New,just visited 4 urologists and 1 MD!
« Reply #5 on: May 08, 2017, 01:28:21 AM »

Pepe;

The reason for that is that many years of dealing with this disease has shown us that it's somewhat enigmatic. What works for one guy does not for another.

Xiaflex being just one example. For some it's been successful, for others not.
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skunkworks

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Re: New,just visited 4 urologists and 1 MD!
« Reply #6 on: May 08, 2017, 05:21:35 AM »

Personally I'd try pentox and supplements with traction+heat or VED. Then Xiaflex if that doesn't get you the results you want in a year.

Problem with Xiaflex is that it is new and at the moment it seems like your outcome is highly dependent on how good the guy doing the injections and modelling is. Hopefully that side of it will get better as time goes on, and maybe methods change. For instance, I think ultrasound guided injections would greatly improve outcomes.

Spika

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Re: New,just visited 4 urologists and 1 MD!
« Reply #7 on: May 10, 2017, 10:58:39 PM »

I would like to thank each and every one of you

that took the time to read ,and especially these who responded  and offered me their take on the subject!
As soon as  I decide on the course of action I will let you know, and I will keep you on the loop!

On another subject...

There are two treatments  on the pipeline.
The first is MWPC003 (bromelain based inject able and  promising) but they have only done pre clinical trial so far.
I listen to their tele conference this last Monday morning, no word about starting Phase 1 Clinical trial... don't hold your breath!
The other one is FS2. This is topical treatment not injectable, they are done with Phase 1 and they are ready to start Phase 2.
FS2 it seems it does not have any issues with Xiaflex(orphan ) because is not exactly the same... ITS topical.

I had a chance to talk with the Chief Scientific Officer of the  Bio Med Company (he is a Doctor) and he is open to the idea  of having a parallel and separate Phase 2 Clinical Trial exclusively from members of this  forum..

If I am allowed  i will publish more info...
Do I need to say that I have NOT any interest  in this BioMed  Compamy having a  Clinical trial consisting of members of this forum?
I HAVE NOT!!
Your advice of how to proceed  would be welcomed!
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james1947

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Re: New,just visited 4 urologists and 1 MD!
« Reply #8 on: May 11, 2017, 12:28:35 AM »

PRP?

Make a forum search to see how much the PRP helped other forum members!!!

James
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james1947

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Re: New,just visited 4 urologists and 1 MD!
« Reply #9 on: May 18, 2017, 03:54:47 AM »

Regarding:
Quote
If I am allowed  i will publish more info...
Proposing you to write a PM to the forum Administrator in the subject, LWillisjr

James
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LWillisjr

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Re: New,just visited 4 urologists and 1 MD!
« Reply #10 on: May 22, 2017, 08:35:56 PM »

This topic is now locked as it has max replies for an introductory topic.
Continue to post in other boards on the forum.
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Les - 8 yrs Peyronies Disease free
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