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[P11050]

I had a 110 degree ventral curvature, and hinge/indent was recommended plication but declined.  I started out with 7.75” and am almost there again. 

I had a single series of Xiaflex (2 injections) with modeling.  First evening while performing stretching, I heard a had a pop.  Swelling and such for two weeks now, is declining.

I gained almost 1.5” almost immediately after the pop, and perhaps more with further stretching with Restorex.

Girth has increased back to what I remember.  I couldn’t be more pleased. 

It’s a huge relief.  I don’t need to tell you Peyronies is a very challenging disease emotionally.  I continue with manual stretching and restorex 30-60 min/day.  Hoping it stays stable.  I may need an Extra Tunical Grafting for buttressing, due to the amount of initial curvature and resultant defect post-correction.

Will post follow-up’s in following weeks.

[P11050]

Forgot to include curvature results. I estimate that residual curvature is probably 10-15 degrees.  I’ll take that and just be grateful every day.  Ready to move on from this difficult chapter.  Onward and upward.  Pun(s) intended.

[Jamesblue]

So happy for your very fortunate results.
It's great to hear .👍

[Dorian]

Thank you for posting your experience and results. I find it encouraging.

I'm at about the year mark of diagnosis and using RestoreX, VED, and all the meds/supplements. I've held steady with some slight improvement. Pain has finally subsided so I'm thinking/hoping I am no longer in the active phase. I have a follow-up in another month or so and my doc said previously, once I'm stable, he will likely recommend Xiaflex to see if it helps with the remaining indent/hinge I have. I have some hourglassing too but the groove across the top near my base is deep and creates instability... almost like I can fold my erection at that crease. I do remember when first starting RestoreX I felt something give in that area and then the springs released a bit so it was clear something physical had indeed happened. There was near instant improvement in length and the groove lessened a bit too. So you're "pop" similarly resonates with me. That would be my goal, in a way, as I think a bit more release in that area and I'd be in decent shape.

[P11050]

Not sure if it’s ok to post provider names or not.  I read journals and flew out of state for my provider.

He is doing some unique things.  Restored traction with xiaflex. 

The goal of modeling after Xiaflex injection, is to create small controlled fractures that are managed with out surgery.  It’s revolutionary.  I haven’t seen or read of other practitioners with those treatment objectives. 

In his practice, the AVERAGE patient sees a 60% improvement in curvature.  That’s landmark results.  He publishes his results as well.

He holds fast that there are no studies that substantiate oral meds at all.

I can’t say enough how grateful I am I found him.

He was actually cheaper than the providers in the major metropolitan area I am from as well.

[chemistry]

If its allowed, do tell us his name or link to the studies you have mentioned. Happy to hear about your progress!

[P11050]

Dr Trost at the Orem Peyronies clinic.

I’d go to his site and watch all his videos.

Oral meds, Xiaflex.  All of them.

His studies are posted on his site.

[Kobegianna]

Do you have any before and after photos ?

[P11050]

I don’t.  I’m your average dude/father/husband, who doesn’t want his junk floating around in the “ether” on the “inter-web”.  My kids love to see my photos of themselves on my phone, and look through/throw images/family videos to our tv from my phone all them time.  There’s some stuff you can’t un-see, that would take some serious explaining.  A peyronies pic of your dad would be one of those things. 

The 110 degree measurement was taken by the first urologist.  I’m guessing at my current curvature.  At my follow up visit, they’ll take a new measurement and make it official. 

I’m just grateful I have no pain, and I can make love to my wife, and am freed up emotionally to focus on things that matter more than my junk.

[Kobegianna]

Why is it that the people that have the most improvement and “success” never have before and after photos. I’m not saying you are lying but it’s very disheartening that all the people that proclaim success or they are cured never can provide proof. Is it coincidence? I don’t.

[Kobegianna]

If you truly had Peyronie’s with 110 degree curvature I’m pretty sure you would have already been on this forum along time ago. Also  excuse of your kids seeing the photos is weak. Take the photos and delete them. It’s not that hard. Also you just joined the forum 3 days ago and you are proclaiming all this success I call 🧢🧢🧢.  Xiaflex is also not usually recommended for ventral curves and you are proclaiming this drastic improvement and success. Very hard to believe. Sorry for the pessimism. Been on this forum way too long and dealt with Peyronie’s to know that that type of success is almost unachievable.

All the newbies on here take this guys post with a grain of salt.

[P11050]

Well here’s the thing.  If you’ve got Peyronies, your gonna have to trust someone.  It’s been the hardest stretches of my life.  I did my research, was willing to travel internationally if necessary.

I settled on my doc after reading every scientific article I could get my hands on.  You should do.  If you are willing to do that, you’ll likely land on a guy whose leading out and doing new things.

Ventral curvatures actually respond the best to the treatment protocols he employs.

Chances are, with your pessimism, this post isn’t for you anyways.

I posted for those looking for some hope. 

Your going to have to tryst someone.

[Kobegianna]

I have talked to Dr trost also. I dont know if you or I have the facts mixed up but I’m pretty sure using xiaflex for ventral curves is the most dangerous because of risk of damaging the urethra….

[GaussRifle]

That is incorrect. I had xiaflex on my ventral curve at Mayo Urology, the top specialist where Dr.Trost was a part of. They said the original study for xiaflex was never done on patients with vemtral curve because they dint know if it was gonna harm the urethra. Now they have been routinely doing xiaflex on ventral curve because the risk of damaging the urethra is very little in the hands of a specialist... they know how to squeeze the urethra and inject away from it. I have gone through the entire xiaflex cycle on my ventral curve. The head of male andrology and peyronies also told me that they had more success with ventral curves than upward ones. In fact most ventral curves improve by over 50 percent as compared to 33 percent of dorsal. They are looking to publish or may already have published that data.

[Kobegianna]

That’s good to hear. I’ve always read the opposite. I guess it’s not true anymore

[P11050]

Kobegianna,

I can hear the frustration and perhaps even desperation in your posts. 

Ventral curvatures can safely be treated with Xiaflex - and should be.  It’s a shame more urologists seem to be opting out.  I should refrain from judging too much.  It usually take a provider who stays current 5+ years to change how they treat when new treatment options come out.  No one wants to be the first.  It involves risk.  You’ve  gotta be bold.

The first urologist I went to for my initial diagnosis obviously didn’t want anything to do with Peyronies.  The next guy treated safely with Xiaflex a very limited group of people - no ventral curvatures, and no calcifications.  The third guy I went to referred me to was just a surgery guy.  He referred me to the major teaching university in my area.  I had a consult with the head of Andrology there.  He wasn’t going to do anything to address the plaque at all.  Simply plicate.  I could tell he was uncomfortable with ventrals also.

Making my case even more completed was the fact that my plaque was calcified. 

Ventral and calcified - you’ll find few urologist lining up to treat it without a scalpel.

Dr. Trost told me that many ventral plaques look calcified on ultrasound because the ultrasound has to go through he urethra to image - which makes it look calcified, or more calcified than it is.

This guy has done 3 Andrology fellowships.  But more importantly, he is about the only guy I know doing new things based on RESEARCH, that he is publishing peer reviewed.

Here’s the other thing.  Before and after dick pics on an anonymous forum of a single individual are meaningless.  There are thousands of urology clinics in the US.  Most all of them have before and after pics that can easily be copied and pasted if people want to be deceptive. 

Genuinely not sure why anyone would want to do that.

What you should be after is research papers in order to locate a treatment modality that works for you, and a provider to do it.  Then ask them for before and after pics if that’s what you need to move forward.

All I needed to here him say is we haven’t seen a single urethral complication from Xiaflex in our clinic, and overall ventral curvatures see on average, a 60% correction in curvature.  I felt like I could trust him and it worked out for me.

There isn’t any treatment that doesn’t involve risk. There is no treatment that is guaranteed.  There is no treatment that’s going to be free. No treatment that’s going to be painless.  And no treatment that’s going to give you your same pre-Peyronies penis back.

But, there is damn good treatment options for those willing to do the work, accept that they need help, and have the courage to make a decision.

Risk reward assessment for me was an easy choice once at had my consult with Dr. Trost.  I had two more Urology consults scheduled after my visit with the Orem Peyronies and Men’s Clinic (one in Chicago, and one in Seattle), which I canceled after my consult.  I knew immediately this was my best shot.

There is hope for dudes with severe, ventral, calcified curvatures.

Hang in there. 

[Bak]

Posts making unverifiable claims to be a scientist are deleted.

Do not claim credentials on this forum unless you either publically verify the same OR make private verification with the administrator.

Hawk
Founder/Administrator

[P11050]

What your getting from me is I’m pretty darn happy with my results.   To call my results life changing for my wife and I would be an understatement. 

I spent the last 18 months doing what most people on this forum likely do.  Continuously searching for something to help me.  Same google searches.  Same articles.  Praying something new would come up.  It’s not a stretch to say that this can be a condition that can consume you psychologically.  Our sexuality and expression of it are central to who most of us are.

I read posts on this forum over and over for those 18 months and debated whether to post after my results.  In the end I felt like I had an obligation to share it.

And yes.  What he is doing is different.  And the studies he’s published show that.  That’s why I posted. 

The whole point is controlled fractures.  That’s the goal.  Most guys who have a fracture are sent to the ER where they have emergency surgery and terrible outcomes that make it worse. 

An update on myself.  I’m now 6 weeks out.  Swelling is completely subsided.  I have no erectile function loss.

As a scientist you know that there are differing levels of scientific evidence.

Case reports, all the way up to double blinded studies that cost tens of millions of dollars.  Legitimate scientists/practitioners offer what they have to their communities to be peer reviewed, which he has done.  No one is doing multi million dollar double blinded studies out of their office.  Studies of lesser levels of evidence are really a call to action to your peers for better studies which are very burdensome and $$.

I know if no one challenging his published results.  He was the head of Andrology at Mayo.

Honestly, I just felt like I’d be selfish if I just scanned this forum for my own benefit but didn’t share my experience.

If Dr. Trost is treating human beings, I’m quite sure he has some grumpy/unsatisfied patients too.  My experience was remarkable.  I’m grateful.  It completely changed the trajectory of my life.  I do feel I’d be selfish not to share.

[Kobegianna]

If you really feel  it’s too selfish not to share then  share the actually before and after photos. These “success” posts do nothing for anyone. It’s all here say.

[P11050]

KobeGianna,

You are correct.  It is all here say.  So is this entire anonymous forum.  By definition, there is no way to validate any personal data on an anonymous forum. 

All anonymous forums are really intended to be a trail of bread crumbs for another, and a venue for support.

If I have any meaningful updates I’ll be sure to post.

I genuinely wish all here best wishes and feelings.  Hang in there.

[Hawk]

If you really feel  it’s too selfish not to share then  share the actually before and after photos. These “success” posts do nothing for anyone. It’s all here say.

No, you are wrong.  They do nothing for you because you Kobegianna because you choose to reject them.  That's your choice.  Ignore the post but don't speak for the other 20,000 members and 100,000 guests that visit this forum.

[P11050]

An update on my progress.  After three months. I have no remaining curvature.  I did develop small (dime sized) herniation laterally mid shaft.  Increases girth maybe 1/4”.  I am now using restorex two to three times a week for 30 minutes as Maintinance. I started with a ventral 110 degree curvature. 

[P11050]

https://pubmed.ncbi.nlm.nih.gov/34176473/

My herniation is smaller than that.

Above is an article about herniation post-Xiaflex.  I had a phone consult with Dr. Trost.  He said there are 3 options:
1. Surgery - sutures - likely will produce further curvature.  He doesn’t recommend it. 
2. Freshen up the edges of the year in the tunica to encourage healing.
3. See how it goes.

He did say he’s seen it 3 or 4’ times.  When the options were given, folks opted to wait and see, which is what I chose.

Going to run with where I am at.

[Mr man]

Forgot to include curvature results. I estimate that residual curvature is probably 10-15 degrees.  I’ll take that and just be grateful every day.  Ready to move on from this difficult chapter.  Onward and upward.  Pun(s) intended.

Congratulations. You over given me hope. After 3 years of suffering. I'm beginning to settle for life without sex but it kid of means life without a partner.

[P11050]

That’s the goal.  Share a little hope. 

I eased off the restorex probably too soon.  I saw some length loss to 6 3/4”.   I’ve started again, and I have been very faithful twice a day for 30 min.  Length is back up to almost 7.5”.  I also developed a mild  10-15 degree dorsal curvature just below the glans 3-4 months ago.   It’s been stable, no pain at night.  I thought about further Xiaflex injections.  My wife doesn’t notice the dorsal at all, so I’m not going to either.  Will probably pass on Xiaflex for now, but will definitely go back to it if need be.

I have a consult with my doc in 4 weeks.  I have moderate hourglassing and an indent residual from my first 110 degree ventral peyronies episode, which is now corrected.  I may opt for the extra Tunica grafting (tunica sparing).  Whether it’s just cosmetic and adds another 1/2-3/4” of my previous girth, or adds strength (buttressses), either are good reasons for me.  I’d be interested in others experiences.  Has anyone had it done?

[john.doe.550]

P11050,
Inspiring and I'm pleased for you! Will you please describe the ventral plaque that caused problems for you?  This information will help truly interested forum readers to more thoroughly understand the condition that Xiaflex was successful with.  For example, I have a flexible, dorsal plaque running the entire length of my penis from abdomen that stops at and does not enter the head.  This plaque width is approximately 1/4-inch (0.6 cm).  It causes an upward curve that is greater than 90 degrees. In profile, erections look like a backwards capital letter "C" and the head touches my abdomen just below my navel. 

The urologist that treated me with Xiaflex said in the initial consultation, "Sometimes Xiaflex delivers a home run and sometimes it does nothing." My result was not a home run, which is what I'm grateful you achieved.  I was religious about modeling (physical therapy) and remained optimistic throughout much of my treatment, hoping strongly for a really good result.  Your experience provides encouragement and you sharing it is appreciated. 

Even though I had more Xiaflex injections than the limited 4 course protocol and continued modeling throughout and afterwards, insufficient result was achieved for me.  Therefore, after 3 years of peyronies and many Xiaflex injections over 1.5 years,  I've scheduled incisional corporoplasty (a kind of plication). Fortunately, you do not need surgery!

[P11050]

My ventral plaque was about mid shaft, calcified, and septal.  I had a 110 degree ventral curvature.  I had two Xiaflex injections a day apart.  During the modeling after the first injection, I heard a pop.   It was an immediate release and was almost completely straight right away.  Dr. Trost did say the ventral guys tend to see the most dramatic results.

[Mr man]

Thanks for the encouraging post. I have a dorsal curb. Fingers crossed xiaflex will work on me.