Modeling after Xiaflex

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Shane43

Jan is simply summarizing what the medical evidence supports. The clinical studies on Peyronies Disease are few and not that well done, not the fault of the researchers so much as limited number of participants and inability to control all of the possible confounding factors. If you look at the reviews of possible treatments and international guidelines for treatments, there is some variation in recommendations but most are similar to the review cited below. I provide the conclusions section and attach the paper. Oral treatments like vitamin E and Co-Q10 are not harmful, and may even have other health benefits, so I take them as well. But there is only anecdotal evidence of their benefits.

Medical Management of Peyronie's Disease: Review of the Clinical Evidence
Patrick Teloken and Darren Katz

"A great number of medical treatments have been suggested and utilized in Peyronies Disease. Evidence from randomized controlled trial with regards to improvement in curvature exists for intralesional (with CCH and interferon alpha-2b) and traction therapy. Oral therapy has not proven to be effective and due to potential side-effects and costs, is not currently recommended. Topical verapamil with or without EMDA is not recommended and novel topical agents need further studies prior to routine use. An optimal treatment algorithm applying a multimodal approach is yet to be defined. With advances in the comprehension of the mechanisms of inflammation and scarring and the development of new agents, it is expected that more effective treatments for Peyronies Disease will become available."

These two papers (also attached) are a little less enthusiastic about Xiaflex, but seem to simply be noting the uncertainty of how it will work for every patient.

Contemporary surgical and non-surgical management of Peyronie's disease
Recent advances in managing Peyronie's disease

This last paper "Minimally invasive therapies for Peyronie's disease: the current state of the art" (also attached), concludes:

"The optimal minimally invasive therapy for Peyronies Disease likely involves a combination of non-surgical therapies. Further investigation into particular combination therapies, including oral anti-inflammatory agents, CCH, and PTT,
may reveal a synergistic therapeutic effect. Nonetheless, surgery offers the highest success rates for men with chronic-phase Peyronies Disease who desire rapid return of a functionally straight erection."

All of these papers were published in the last 2 years and are from highly qualified medical researchers at very good medical schools. None of them note any conflict of interest with manufactures of Xiaflex, traction/VED, or any other therapies.

They are not saying that the many therapies discussed in this forum do not or cannot help, but that there is no good evidence that they work. I realize that not everyone has access to Xiaflex or is a good candidate for this drug, but it does appear to be the best non-invasive treatment (with reasonably good controlled clinical studies to support it) used alone or in combination with traction.

And from my personal experience, after three series of injections, it has made a very big improvement of my hourglass indentation and penis stability, albeit with some pretty bad bruising and pain, but well worth it.


62YO, hourglass indent/hinging at base 30deg bend up 3cmx2cm hard plaque at dorsal base. No ED. 3 rounds Xiaflex decreased plaque/indent/hinge/bend. 1 year later, penis went from 7.5 to 5.5 in, but only 15 degree bend and no hinging.

Shane43

Sorry that my above message is a bit out of place on this topic of "modeling", but I thought I would write a more complete response.
62YO, hourglass indent/hinging at base 30deg bend up 3cmx2cm hard plaque at dorsal base. No ED. 3 rounds Xiaflex decreased plaque/indent/hinge/bend. 1 year later, penis went from 7.5 to 5.5 in, but only 15 degree bend and no hinging.

MFPC Trost

Going back to the original post, modeling is absolutely critical to getting a good outcome.  In the original phase IIb study, men who didn't model had no improvement, while those who did experienced benefits.  We have been adjusting our modeling technique over time, and our median improvements with Xiaflex have almost doubled from when we first started.  There are a lot of considerations with Xiaflex injections though to optimize outcomes and minimize complications.  We put together a video on this to highlight many of the things that we've learned since first doing these injections in early 2014.  
Landon Trost, MD - Peyronies Disease & Male infertility
Medical School - Tulane University
Urology Residency - Mayo Clinic Rochester
Inventor of RestoreX penile traction therapy
https://malefertilityandpeyroniesclinic.com/peyronies/

nemo

Dr. Trost, welcome to the Forum, we're pleased to have you join us!

Regards,
Nemo
51 yrs. old, multiple auto-immune conditions. First episode of Peyronies Disease in 2002. Recurred a couple times since. Over the years I have tried Topical Verapamil, Iontophoresis, all the supps and Cialis + Pentoxifylline. Still functional, always worried.

GaussRifle

We are very pleased to have Dr. Trost with us indeed !

As far as modeling after Xiaflex is concerned, I typically feel scared doing modeling with hand because it's tough to maintain pressure and apply the right force. Is it reasonable to skip hand modeling as long as you are daily doing modeling with RestoreX twice a day and expect curve improvement  ?
26 year old
45-50 degree downward curve with an indentation on one side when erect.
Using RestoreX and Xiaflex injections
Taking coq10 with daily Cialis 5mg.

Bak

I am posting an update about my Xiaflex injections + manual and RestoreX manipulation

This was my previous medical history

QuoteName: Bak
Date: May 16, 2022
Level of calcification (if any): mild/low level of calcification
Result: Neutral
Number Of Shots: 8 (4 cycles of 2 shots each, every 6 weeks)
Doctor: James Kashanian, NYC
Modeling: Self, manual and via RestoreX
Summary: Each cycle was made of 2 injections a week. I had 4 cycles in total, each cycle every 6 weeks. The curvature measurement were made prior the first injection of each cycle, in the doctor office. To measure the curvature, I received a medication (injection) to stimulate erection, and the measurement was made with erect penis.

1. Prior to my 1st cycle the curvature was 55 degree, pointing upward.
2. At the beginning of the 2nd cycle, the curvature had worsen to 65-70 degrees. I also developed a bruise after the 2nd injection of this cycle, but not big deal, it went away in one week with no complications
3. At the beginning of the 3rd cycle, the curvature was 55 degrees again.
4. At the beginning of the 4th cycle, the curvature was 45 degrees. I developed a bruise after the 1st injection of this cycle which then went away in a week with no complications.

I am now waiting a few weeks and doing only manipulation with RestoreX and will then decide whether to continue with more Xiaflex injections or not.


Two months after the end of the 4th cycle my curvature was back to 55 degrees. Basically the same as when I started the therapy - no improvement whatsoever. Furthermore, around the same time, another nodule/plaque appeared on the right side of the tip. The doctor said it may be caused by the use of RestoreX so he told me to stop using it and only do manual manipulation. He suggested Xiaflex injection to dissolve that. I did two more injections on that plaque. The nodule dissolved quickly but it developed hourglass which caused a bending also towards the right (initial curvature was 55 degree upward).

The second injection of Xiaflex within this cycle also caused ematoma and huge swelling. I had intense pain for a week, double checked with the doctor which said it is one of the possible reaction to the medication. Two months after this injection I still have some swelling and pain during erections.

The experience was really bad and, overall, I have seen no improvements with Xiaflex + RestoreX so I decided to stop this therapy which comes with some not-negligible risk.

Be safe guys.

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

Lookin Up

I'm one week removed from my 2nd Xiaflex treatment at MFPC with Dr Trost and his crew. I want to share my experience because I feel some of the posts above set unreasonable expectations, especially about pain and bruising.

Our penises bend because there is scar tissue inside. Xiaflex dissolves part of that tissue chemically. The practitioner stretches and bends the penis to rip apart as much of that scar tissue as possible. Then it's our job to continue to do so at home, especially in the early days when the tissue is still malleable (which is exactly when you least want to do it).

Make no mistake. Xiaflex is a serious, aggressive treatment that is expected to be painful and lead to significant bruising and swelling (with the exception of a few lucky folks). The doc __really__ insists that the wrap does not come off the first 48 hours because the thin penile tissue does not take to swelling well; the sensitive skin bloats, stretches, and throbs not in a fun way, then guys panic and unnecessarily escalate medical procedures. Keep that dog in the casing.

Think of it this way. It's like we have a piece of tape stuck inside our penile balloon, so the balloon cannot inflate properly. We inject enzymes that eat away at the tape, plus undoubtedly some healthy tissue Then, we yank on the balloon to break the tape apart in the hope the balloon will inflate as new. Go ahead, try to remove tape from a balloon, and see what it takes.

In my two treatments, my penis is a black and blue swollen painful mess from glans to scrotum for 7-10 days. Modeling by hand or with the RestoreX in the early days is more painful than the most intense gym burn. It sends me back to my forgotten mindfulness practice. Night-time erections wake me up for the first few days. And even though I feel fully "recharged" after a few days of abstinence, woody is way too sensitive to entertain the thought of masturbation, let alone sex, for about two weeks. In my first course, I had an inflated girth for up to four weeks after the treatment, long after the bruising and major pain went away.

In any case, that's my experience which matches the expectation set by the 3 MFPC practitioners I have seen, including Dr Trost.
Erectile pain 6/2022, curvature start 1/2023, diagnosis 9/2023
Before Xiaflex: 40° dorsal curve, 35° left
After course 1: 30° dorsal curve, 30° left
After course 2: tbd!

50 yo, lean, fit, uncircumcised
RestoreX since 12/2023

randyzon

I just found this thread. I did the modeling exercises for stretching. Then I used the Restorex the 1st time.

Hand stretching is no contest for the Restorex. Restorex pulls several times better than the hands.

My doc treats a lot with Xiaflex and had never actually seen the device till I brought it in for advice.

Is hand modeling mandatory for 2 days before the device? Will ask on the next visit and show the Dr how much tge device pulls.
73 yr old, sex injury in May 2023, acute phase was very fluid for about a year then resulted in 70-90 degree curvature upward. Began Xiaflex treatments December 15, 2024 with Restorex treatments twice daily. Phoenix area U.S.

BentKnob

randyzon: Where did you get your Xiaflex treatment and how much did you pay?
35 years old
Married & open relationship
In 2023 injury caused by repeated micro trauma, first noticed in early 2024
20°-30° curvature to left
Finasteride 10 years
ESWT
SOMAcorrect, RestoreX
Tadalafil, Acetyl-L-Carnitine, CoQ10, Vitamin D3 & K2

randyzon

I received treatment from Dr Blick in Phoenix. I did an initial interview with his PA where she took my information, did an exam, and set up a ultrasound appointment.  The schedule was backed up 3 months. An ultrasound was performed after a trimix injection for erection. Fortunately, there was plaque but no calcification. After reading some forum material I found that CoQ10 seemed to help in that manner and fortunately, I have been taking 300mg every morning for the past couple of years.

My injury was in May 2023. The damage was very fluid and by that I mean there were a lot of changes over 12 months until I finally got a 60 degree curvature that ended intercourse and drove me to find a urologist that was capable.

I had already been thru 5 urologists in our area. One interviewed me a couple of times, ordered tests, ordered trimix for me to pick up and bring back for an ultrasound. I dropped that one because she never did an actual exam. I do have a problem with a urethra stone if you wonder about the scope discussions. I visited another that jammed a cystoscopy scope down my urethra and I hurt for two weeks. He did not use any lidocaine. Just a dab of lube on the scope. Another one didn't use lidocaine either because "studies" show it was not necessary. I visited a urologist I had seen in the past in Seattle that was very gentle with the scope and I tell you it does make a difference with lidocaine lube.

The last one before Blick had a severe office management problem. They would not call back and didn't follow the Drs prescription for testosterone and wasted a lot of my time. He also wanted $400 for the first evaluation for Peyronies and $200 for each office visit after that as they said insurance would not pay for it. Little did they know.

So, back to Xiaflex. Blick has a service that would set up the prescription and even help with programs that save you money. I am a federal employee that has Blue Cross Blue Shield in the U.S. They have a specialty pharmacy and pre-authorization requirements. Once setup with the pharmacy I can order Xiaflex delivered next day and the fill is for a 21 day time period by the Dr. The co-pay to me for each refill is $65. Blick joked after the 2nd part of the 1st injection that I had just received $4000 worth of medicine. I feel extremely fortunate.

Let me say I feel confident in the Dr as he specializes in implants and penile surgery. The PA is knowledgeable and fantastic.  If I had to do it over again, yes.

The first injection caused enough hematoma that I had a lot of anxiety about the blood pool. No wrapping the 1st time. The 2nd part they wrapped and said to remove in a few hours. After 5 hours I did and slept overnite. It had quite a bit of pooling on the shaft and I called. It just takes time for everything to settle down. I have the restorex. It caused some pain with the hematoma but I kept with it. I can see improvement already.

By the way, I am 73 with a lot of life to live.

Trost has some great videos.

73 yr old, sex injury in May 2023, acute phase was very fluid for about a year then resulted in 70-90 degree curvature upward. Began Xiaflex treatments December 15, 2024 with Restorex treatments twice daily. Phoenix area U.S.

richestorags

Quote from: Lookin Up on September 29, 2024, 01:22:31 PMI'm one week removed from my 2nd Xiaflex treatment at MFPC with Dr Trost and his crew. I want to share my experience because I feel some of the posts above set unreasonable expectations, especially about pain and bruising.

Our penises bend because there is scar tissue inside. Xiaflex dissolves part of that tissue chemically. The practitioner stretches and bends the penis to rip apart as much of that scar tissue as possible. Then it's our job to continue to do so at home, especially in the early days when the tissue is still malleable (which is exactly when you least want to do it).

Make no mistake. Xiaflex is a serious, aggressive treatment that is expected to be painful and lead to significant bruising and swelling (with the exception of a few lucky folks). The doc __really__ insists that the wrap does not come off the first 48 hours because the thin penile tissue does not take to swelling well; the sensitive skin bloats, stretches, and throbs not in a fun way, then guys panic and unnecessarily escalate medical procedures. Keep that dog in the casing.

Think of it this way. It's like we have a piece of tape stuck inside our penile balloon, so the balloon cannot inflate properly. We inject enzymes that eat away at the tape, plus undoubtedly some healthy tissue Then, we yank on the balloon to break the tape apart in the hope the balloon will inflate as new. Go ahead, try to remove tape from a balloon, and see what it takes.

In my two treatments, my penis is a black and blue swollen painful mess from glans to scrotum for 7-10 days. Modeling by hand or with the RestoreX in the early days is more painful than the most intense gym burn. It sends me back to my forgotten mindfulness practice. Night-time erections wake me up for the first few days. And even though I feel fully "recharged" after a few days of abstinence, woody is way too sensitive to entertain the thought of masturbation, let alone sex, for about two weeks. In my first course, I had an inflated girth for up to four weeks after the treatment, long after the bruising and major pain went away.

In any case, that's my experience which matches the expectation set by the 3 MFPC practitioners I have seen, including Dr Trost.

Dr. Trost was quite blunt with me that his program is quasi-military and that the best results are obtained by patients who follow his protocol. This did not seem nor was taken as arrogant, rather, he has a method to get the best results but it is not easy. I had Xiaflex injections 03/16/2023 and 03/17/2023 and then cranked the RestoreX to the max just hours after the injections on 03/17/2023 and for several days afterwards. Xiaflex has a limited duration during which it is active/effective and making the most of that duration was critical (at least in my case) to obtaining optimal results. The wrapping protocol prescribed by Dr. Trost helped me get through the first several days until I had passed what was thought to be the "safe zone". Nope. 03/22/023 I stopped wrapping and had a "pleasant" dream. My unit swelled up and looked like a squashed toad. It hurt like hell and took several days before I could resume RestoreX use. In the end, did it matter? I don't know. It was just astonishing to be in a hotel 1/4 mile from his office, cranking the RestoreX a few hours after the injections and getting to length and counterbending milestones that were unthinkable pre-Xiaflex. I don't want to sound like a shill for RestoreX, however, the current Xiaflex protocol of hand stretching and counterbending seems inadequate in light of what the RestoreX did (at least for me). It was a shock to see the dang thing extend like Stretch Armstrong and it didn't hurt.

Hindsight being 20/20 I would have done it again with the only exception being wrapping for ten days post-injection instead of five. Dr. Trost told me that the only risks of extended wrapping were chafing and infection due to prolonged wet bandages. I used Neosporin and changed the bandages several times a day to prevent the foregoing. There are horror stories of guys who got Xiaflex injections with no wrapping, no RestoreX and no benefit. Dr. Trost is able to negate those issues.

There is an old saying, "The proof is in the pudding". Well, red-faced, yesterday me and the Mrs. went on a a weekend getaway. We can both say, "Thanks Dr. Trost".
-Peyronies Disease onset 11/2021
-Xiaflex inections by Dr. Trost 03/16/2023 & /03/17/2023 + aggressive RestoreX use
-Pre treatment curve 70 degrees, post-treatment curve estimated at +-20 degrees by Dr Trost 04/11/2023
-Daily Restorex use to prevent recurrence