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Xiaflex for hourglassing/dents/hinge (Septal plaque)

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Dorian

My current situation is that after 15 months of treatment, per my sig, I've had some minor improvements and have not gotten worse. I've never really had a curve but my main issues are hourglassing, dents, and a rather deep groove across the dorsal side that can hinge/fold a bit.  These have improved marginally with the kitchen sink I've thrown at it. I suspect mostly from traction/ved.

My doc said to give it 3 more months and then I can decide if I want to try Xiaflex. He said the data is around curves but the theory would be the same on plaque in general. His analogy was that plaque is a brick wall and Xiaflex destroys the mortar holding the bricks together. Again in theory, if this happens then it would allow for some release in my case. He further explained for hourglassing/dents that the plaque is in the septum. He said mine is rather small but he can feel it, which gives him a target.

This is a large hospital system in a major metropolis and he said they are doing a study on Xiaflex for atypical (non-curve) Peyronies. He gave me two polar opposite examples he's seen recently, one where the person had improvement and another where after several rounds there was zero improvement. He said it's just something to try and see, if I want, since he knows I'm doing everything I can. He said there were no negatives other that discomfort, swelling, and bruising. He was part of the original Xiaflex trials and in the near decade since he's only had one penile fracture.

Anyway, wanted to get some thoughts or experiences from anyone here in this regard.

Thanks,
Dorian
47
Noticed less morning, and less strong, erections 2020
Noticed dents/groove/hourglassing/hinge near base 2021.
Urologist had me start Pentox, Vit E, Cialis, RestoreX.
I also started VED and all supplements in the guide.

Mikel7

Your Dr has informed you well  as Xiaflex is used as he has stated.  There are mixed outcomes as some men respond well to it and others don't. I believe it all depends on the location of the plaque and the surgeon performing the procedure.. One final note is the cost $$$.
Lump April 2020, age 61 , Dr Levine 6-26-20,
Dorsal Curve 11-1-20 , Peyronies
Vit E400mg, COQ10, ALCAR, Heat Therapy, Penimaster, Pentox, Cialis, Restorex
had SNHL 7-31-20 - Stopped all Meds because ototoxicity  Heat/traction/VED are working.

FrankPD

Hello,

That's my issue, plaque and hourglassing, no curve.  My second opinion uro said that Xiaflex would be perfect for my case but my insurance wouldn't cover it because there's no curve.  Xiafelx is about plaque, no?  It should be covered because it does cause discomfort.  That would be awesome to allow it to be used.  The hourglassing has gotten worse since my original diagnosis in January.  It's been pretty stable now, knock on wood.  No pun intended.

Be well guys.
Age 46
No injury
Diagnosis January 2022  
Have plaque
Hourglassing when flaccid and semi-erect
Still have my congenital curve, no severe curving
Massaging with vitamin E cream twice a day 
5mg Tadalafil
Low carb diet
Discomfort/aching sometimes

Kobegianna

"No negatives" bro c'mon man. There are so many more negatives then just swelling and bruising. if the plaque is in the septum I would even be less inclined to even try xiaflex. If the plaque is big enough and easily injectable the xiaflex may help since it would only be injected into the plaque only. The problem arises when the xiaflex is injected into other tissues besides the plaque, like the spongy tissue/erectile tissue. This will most likely cause irreversible Erectile Dysfunction. I wouldn't risk trying to get injected with xiaflex in the septum. Too many other structures you have to avoid to get to the plaque. You are just a Guinea pig for them at this point.
34 yrs Old, Healthy very active
Possibly injured penis or took too much Cialis
Symptoms starting January-February 2021
First dent seen April 4, 2021, painful erections

Bud luck

Xiaflex can also destroy your healthy tissue, plenty of men got worse with Xiaflex injections, is a risky drug.
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 Erectile Dysfunction is getting worse
Had a PRP shot Aug 2021
I have a girlfriend
Age 46

Dorian

Hi all,

Checking back on this to see if anyone has any additional thoughts or personal experience with Xiaflex for hourglassing/dents/hinging as the primary issue, rather than a curve.

I'm approaching the appt where I will be asked to make a decision on whether to give it a go or not.

Thanks,
Dorian
47
Noticed less morning, and less strong, erections 2020
Noticed dents/groove/hourglassing/hinge near base 2021.
Urologist had me start Pentox, Vit E, Cialis, RestoreX.
I also started VED and all supplements in the guide.

Shane43

I had hourglassing and significant hinging to the point sex was nearly impossible - and frightening. Large dorsal plaque at base of penis. I had only a 30 degree curve, but my urologist exaggerated to 70 degree and I got insurance to cover Xiaflex. I went through 3 rounds, six injections. The pain of the injection is real, but only lasts a few minutes (I had no anesthetic) so I think that is trivial. With each series of injections, the swelling, bruising and scrotal pain got worse. After the third series it took 3-4 weeks for all swelling and pain to go away. I decided to skip the 4th series and see what happens. Within a month or so, the indentation size and hinging were reduced significantly and I could finally have sex - carefully. There was still instability, but much better than the floppy penis I had before. Note, I can get good erections otherwise. This was all 2 years ago. So I was pretty happy with the results, even if I was still not that close to where I was before all this started (3 years ago). Then after another 6 months, my penis began to curve and shorten. But no additional hourglassing, no worsening instability. I went to see Dr. Levine in Chicago and he recommended traction for 6-12 months and then possibly surgery (partial excision and grafting). I have held steady the past year, possibly getting a little worse. But I can have sex in a few positions, albeit, I went from 7 inches to 5.5, I am thinner overall, and I have a 45 degree curve and small indentations half way down the penis. Overall, I would do the Xiaflex again because I do associate the decreased indentations and hinging to the Xiaflex and I went from no sex to pretty good sex. What I do about the new curve and shortening is what I am pondering now. I wish you good luck!
62YO, hourglass indent/hinging at base 30deg bend up 3cmx2cm hard plaque at dorsal base. No Erectile Dysfunction. 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.

Dorian

I saw my doc today. The plan was to induce an erection, take measurements, and decide on Xiaflex.

I first showed him some current photos. My biggest problem at this point is a groove/dent across my entire dorsal size about an inch or two from my body that presents a definite weak spot/hinge if I'm not careful. This kink has become smoother after the 1.5 years of kitchen sink approach, but is still my primary problem along with some corresponding hourglassing in the area. I could live with my current state, I suppose. However, I can't help think that if Xiaflex afforded even the most mild of improvements, I'd be in that much better shape and would be near normal.

Doc said I have a small plaque on the dorsal side that goes down a bit between the two corpus cavernosum. About the size of a small pea in total. He said it's a definite target to work with.

As mentioned previously, he was part of the original Xiaflex trials and has been administering it ever since with high frequency. He has seen none, mild, and good improvements in cases similar to mine, but obviously cannot say with any certainty what I will experience. What he is seemingly more confident of is that I will not get worse as a result of Xiaflex and there should not be any negatives outside of discomfort and bruising. He said there are no guarantees but the horror stories I mentioned are just not something he sees in general let alone what he would expect with my specific case/size/location/etc.

Seeing if my insurance approves.

That's the latest.

Dorian

47
Noticed less morning, and less strong, erections 2020
Noticed dents/groove/hourglassing/hinge near base 2021.
Urologist had me start Pentox, Vit E, Cialis, RestoreX.
I also started VED and all supplements in the guide.

Stepone

Ok, so this is my take on this.
I too had a hinge, narrowing, and small amount of plaque, along with a complete L bend to my penis which made sex impossible. I also had leakage in my penis, which meant I could get an erection, but I would lose it.
The doctor told me about ZiaFlex but didn't recommend because of hinge. He said he could do a modified Nesbit which fixed the hinge, but it shortened my penis and did nothing to fix the leakage or narrowing. I should have never had this surgery, because I had yet learned of implants.
Needless to say, after seeing two more urologists, that never mentioned an implant, injections into my penis to get an erection, and the damage that caused, I finally met a urologist who suggested an implant.
I wish I had gotten the implant on 2015 and it would have saved the one inch length loss, all the damage the Nesbit did to my penis, etc.
We are all different and all have various penis issues. But to me, since you already have erection issues and a hinge, I would definitely go with an implant from a quality high volume physician.
StepOne
Nesbit surgery 2015, 66 years young, Titan Implant 4/25/19, 22cm, Dr. Lentz, Duke University NC

Dorian

I understand your personal experience and your overall point, but I'm definitely not near implant stage or surgery at all yet. I don't have many of the issues you did. I'm still functional and while I have some mild hourglassing and denting/groove that could hinge, this would primarily prevent me from a position like girl on top. If I had to guess I'm 80% of goal. Goal being 100% as unrealistic as that may be. So what I'm pondering is, if Xiaflex were able to give me any improvement at all, I would be that much closer to being "normal". I think a small improvement could be semi-substantial for me given my current state. I'm obviously just not looking to get into a worse situation from trying it.

Dorian
47
Noticed less morning, and less strong, erections 2020
Noticed dents/groove/hourglassing/hinge near base 2021.
Urologist had me start Pentox, Vit E, Cialis, RestoreX.
I also started VED and all supplements in the guide.

Stepone

Excellent, I understand thoroughly.
I thought you were doing much worse, my mistake.
Keep on progressing and I hope you reach your goals.
StepOne
Nesbit surgery 2015, 66 years young, Titan Implant 4/25/19, 22cm, Dr. Lentz, Duke University NC

IwillbeatPD

This is a great post, mostly because it's exactly what I'm dealing with. Dorian- we seem to be in the exact same boat. My 10 degree curve that I've had my entire life is not the issue, only the hourglass mid shaft that causes instability. I firmly believe two people (or a forum) is better than one to try to find a resolution to our problem. That being said I will share my thoughts after millions of hours of research. I've concluded for now that I am not considering an implant. For one, I'm 4 months in so I'd have to wait anyway. And two, I'm 36 and have strong erections so definitely going to try to work with what I have. Like you, I feel like if I just had even a LITTLE more stability, and could do something like extra tunical grafting to improve the appearance, I'd be happy with that outcome. Even if my days of rough sex or having a girl on top are over, I honestly think I could live with that if everything else was fine. I did also read extra tunical grafting is primarily for cosmetic purposes, but I do think it provides some stability as well, and they say your own tissue grows in under the graft with time.

I'm meeting with Dr. Christine soon who specializes in ETG, so I'll be very interested in the outcome of that. I've read about Benjamin's story who had ETG and plication with Dr. Christine and apparently the surgery was a huge success for him. Also read tons of other positive reviews about Dr. Christine.

All of that to say, the only two options I've found are ETG or an implant. Of course, I have read that VED and traction has helped people some- along with pentox, Cialis, etc. I am doing everything I can naturally first. If at 12 months it's not good enough then I'll certainly pursue other options.

I'd love to hear any wisdom you can share on your situation, I'm sure you've done tons of research as well.

You mentioned that your hourglass or dents "smoothed" out some over time. I've heard that before from someone else. Was it strictly cosmetic change or have you noticed more stability at the same time?

Step- I didn't realize you had a Nesbit surgery for the hinge. I also didn't realize it was even possible to cure a hinge with the Nesbit surgery. That's similar to plication right? Shoot, I'd sacrifice and inch without hesitation if it promised me stability going forward and no hinge. Anything else you can share on this would be appreciated. Basically, is this something you think I should consider? Any reasons to not pursue plication/Nesbit other than shortening?

On a side note, I've read a post from Dr Trost addressing this exact topic, and he said ETG or an implant would be the only options really. Of course he's only one doctor, but ETG does sound to be very positive with minimal risk.
36/Male/No underlying conditions: Symptoms began Sep 2022. Indentation mid-shaft right next to plaque. Mediocre erections with hinge effect. Taking Pentox 400mg 3x/day, Tadalafil 5mg daily, L-arginine, using heat, manual traction and VED.

Dorian

Hi,

I've been at this for almost 2 years and I think I've maxed out for the most part though I sometimes do think I'm still getting very small incremental improvement. I feel most of this has been from traction and VED. Traction in the beginning and VED more so for recent improvements. I started out following the protocol here but my doctor suggested pumping to full (comfortable) erection and holding it for 10 minutes as the goal is to stretch the plaque, at least in my case. I saw a study where there was pumping to full erection but repeated 3 minutes holds. So while it takes me a good 5 minutes to even get to a full size erection while I cycle pump/holds.... for that 2nd 5 minutes of my 10 minute session I do pump to full erection and hold for a few minutes and repeat. So somewhere in between the protocol here and what my doc said. I believe this has helped the hourglassing slightly as well as the dent/hinge.

I'm at the point of trying Xiaflex as per what I was originally pondering in the original post of this thread. I see it was delivered to my doctor's office so I'm just waiting for the call to schedule. My doctor has a lot of experience with this and feels it's either going to help or it's not... but that I should not have any negatives short of bruising and swelling. He said it's like the scarring is a brick wall and the Xiaflex weakens the mortar holding the bricks together. AS mentioned above, I feel if I can get even the slightest release in the plaque/scarring, given my current state, that my hinge/hourglass could see a big improvement. (It's a little counterintuitive to me that VED is contraindicated while being treated with Xiaflex as I feel that lateral stretch is what I would need more than the recommended traction type... but that's another story.)

I am not at the point of considering surgeries yet. I do like that surgeons are honing the ETG procedure. That seems promising for cases like ours though it would be nice if there was a stabilizing aspect.

That's the latest.

Best,
Dorian
47
Noticed less morning, and less strong, erections 2020
Noticed dents/groove/hourglassing/hinge near base 2021.
Urologist had me start Pentox, Vit E, Cialis, RestoreX.
I also started VED and all supplements in the guide.

IwillbeatPD

Super interested in how the Xiaflex goes for you. I was very hopeful about the same until my consultation with Dr Trost ended with him saying typically even if the plaque goes away, the hourglass usually isn't fixed. However, this is just one doctor, and this whole condition isn't studied or researched heavily. To me, it would make logical sense that if the plaque goes away, that tissue can now stretch out again. Even if not immediately, what about a year down the road of repeated traction, massage and VED? I'm all for the natural approach. Like you said, even if it's 10% better because of Xiaflex, I'd prob try it. Definitely keep us posted once you have a date set and let us know how it goes.

Also on the VED use, I agree with you. I know there is a protocol here in the forum, but we all have different situations too. Someone using VED for curve I think should be different than someone using it for hourglass. In any case, those of us with hourglass are trying to stretch the tissue as much as possible, so full elections make a lot more sense to me.

On traction, how are you doing that? I've only been doing manual traction as I don't know how I feel about using a device, and for periods that long. I've heard alot of people talk about how it made their situation worse. Hand traction for 10-15 min a day I can see being helpful with low risk. I do that and almost consider it like massage at the same time. I start at the base and use one hand after the other to pull straight out at a downward angle. At a minimum, this promotes blood flow, while also massaging the tissue and gently stretching the penis.

Just my two cents.
36/Male/No underlying conditions: Symptoms began Sep 2022. Indentation mid-shaft right next to plaque. Mediocre erections with hinge effect. Taking Pentox 400mg 3x/day, Tadalafil 5mg daily, L-arginine, using heat, manual traction and VED.

Dorian

I will most certainly report back with my Xiaflex experience.

As far as VED and pumping to full erection and having longer holds, I've been doing this for much of this year. I feel a stretch (but never pain) in my problem area so I do believe it is stretching where I need. I've not noticed any negatives by doing this and seemingly the inverse, albeit minor improvements thus far.

I'm using RestoreX and would highly recommend it. I vary how I do it after having seen multiple doctors and a vid consult with Dr. Trost.

I had originally just did it straight for 30 minutes because that's what my original doctor said to do since I didn't really have a curve to address. However, the 2nd doctor I saw said to do 15 straight and 15 angled down. Though my hinge is well below the fulcrum of the device, he said it would still give some added stretch. And it does, I can feel it. Taking that a step further, after speaking with Dr Trost he said for hourglassing he will bend in all directions except in that of the curve. So, I will mix in variations where I do straight, down, both sides, and occasionally I'll do 4 and 8 o'clock. I just never do up because that is the direction of my hinge.
47
Noticed less morning, and less strong, erections 2020
Noticed dents/groove/hourglassing/hinge near base 2021.
Urologist had me start Pentox, Vit E, Cialis, RestoreX.
I also started VED and all supplements in the guide.

IwillbeatPD

Interesting. That's also what I read in Trosts post here. Maybe I'll give that a shot!
36/Male/No underlying conditions: Symptoms began Sep 2022. Indentation mid-shaft right next to plaque. Mediocre erections with hinge effect. Taking Pentox 400mg 3x/day, Tadalafil 5mg daily, L-arginine, using heat, manual traction and VED.