Grafting surgery for a hinge effect / destabilizing hourglass

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Beaker

I have read several articles on this site for the information but have not really been involved in the treads.  I was diagnosed with peyronie's about a year ago and am at the tail end of the acute phase.  I have been through all 4 cycles of xiaflex, but following the last cycle I had my second penile fracture.   My doctor and I do not believe it was a result of the xiaflex, but I had begun developing a hinge and didn't realize it.  After I healed from the surgery to repair the fracture the hinge was much more noticeable.   I now have a hinge and 2 indentations.  One indention on left with another on the right directly above it.  So I kinda have a slight S curve.  Suprising enough I have regained some of my length I lost earlier, but the hinge has become the serious problem.  I still get strong erections but collapse at the hinge if any real force is applied.  My current urologist is setting me up with a surgeon in the next couple of months.  I am hoping to be given the option for grafting surgery.  I am hoping to know if anyone else has had grafting surgery to resolve a hinge effect and what the outcome was.

TDix

I had grafting surgery, not for hinging though.  Any questions you have I am here to help
47 yrs old, 3 yrs diagnosed
Xiaflex w/original uro resulted in a fracture
Excision/grafting by Dr Faysal Yafi 3/26/19
Implanted by Dr Yafi 8/11/20, Titan 20cm + 1cm RTE

Beaker

@TDix, was the surgery for curvature or deformities?
I have read that the deformities like hourglass and indentations are harder to correct and most times require surgery to repair.  I'm less worried about the post surgery pain and complications.  I have already had one degloving procedure to fix the second fracture,  so I know what to expect there.  And as for complications I believe I would still be a candidate for the implant if grafting didn't work for me.  I'm trying very hard to avoid the implant as my first option, but not knowing if grafting has the possibility of giving me my life back.

TDix

I had a growing hourglass issue and a pretty large indentation.  Those developed closer to my surgery.  At this point, close to 4 weeks post surgery, they are gone.  I am still somewhat swollen from the procedure but it gets better every day.  I am straight and my main goal now is modeling on a daily basis to get the length going, as surgery kind of compacts everything.
47 yrs old, 3 yrs diagnosed
Xiaflex w/original uro resulted in a fracture
Excision/grafting by Dr Faysal Yafi 3/26/19
Implanted by Dr Yafi 8/11/20, Titan 20cm + 1cm RTE

TDix

I started with just a few bead like plaques that grew into large plates along the top.  I started Xiaflex, but due to probably calcification and how thin the plaque was I either had a vein rupture or mini fracture.  Finally went to a specialist, an andrologist that suggested surgery.  As I went through all the steps to get insurance to cover, I saw that I was developing indentations and hourglassing in addition to my 50 degree curve.  Surgery was my only option and, at this point anyways, I am happy I did what I did.  I am just now trying to get the elasticity back as the surgery was a long one, and caused a lot of swelling
47 yrs old, 3 yrs diagnosed
Xiaflex w/original uro resulted in a fracture
Excision/grafting by Dr Faysal Yafi 3/26/19
Implanted by Dr Yafi 8/11/20, Titan 20cm + 1cm RTE

Beaker

@TDix, thanks for your insight.  I wish you a speedy recovery and no complications in the future.  Did the doctor graft just one area or did he have to graft more than one place?  My urologist believes I had a severe fracture the first time and my plaque is in a couple of different spots.

TDix

I had a graft placed in the area of most concern.  He told me he would not excise all of the plaque as it was a lot, and would only excise and graft enough of it to make me straight, fix the indentation, hourglassing issue, and minimize length loss.  I did have to have one stitch of Plication to make me fully straight, but was told it wouldn't hinder length
47 yrs old, 3 yrs diagnosed
Xiaflex w/original uro resulted in a fracture
Excision/grafting by Dr Faysal Yafi 3/26/19
Implanted by Dr Yafi 8/11/20, Titan 20cm + 1cm RTE

Beaker

I feel as if our situations are quite similar.  I started with a curve but the xiaflex had one good round that actually diminished my curve to almost nothing.  But about 6 months into the acute phase I started to hourglass.  Then I started slowly forming a hinge.  The hinge wasn't bad until after my second break.  It had time to get worse while I was dealing with healing from my surgery.   I was dealing with a lot pain for about 3 or 4 months after surgery thinking the pain was complications from surgery, but I now believe it was from plaque growth.  When the pain finally stopped I ended up with a bad hinge and 2 indentations that I didn't have before.  Surprisingly enough I can still function, but sex is out of the question.  I don't want to have a 3rd fracture and the hinge would make it more than likely to happen.

TDix

I don't want to make your decision for you but after dealing with this for almost two years I wanted it fixed.  In my case excision and grafting, at least a month post surgery, seems to have at least given me hope and I am able to see progress.  Anything you need from me I am here for you bud.  I wouldn't wish this on my worst enemy
47 yrs old, 3 yrs diagnosed
Xiaflex w/original uro resulted in a fracture
Excision/grafting by Dr Faysal Yafi 3/26/19
Implanted by Dr Yafi 8/11/20, Titan 20cm + 1cm RTE

TDix

Find a good doctor, no matter how the odds are stacked against you.  I went round and round with insurance, hopelessly searching, and found someone experienced that even though I thought wasn't fully covered actually was!  It's a journey, and if I could do it I guarantee you can too
47 yrs old, 3 yrs diagnosed
Xiaflex w/original uro resulted in a fracture
Excision/grafting by Dr Faysal Yafi 3/26/19
Implanted by Dr Yafi 8/11/20, Titan 20cm + 1cm RTE

Beaker

Thanks, I have said that same line, I wouldn't wish this on my worst enemy, multiple times over the course of this as well.  If I don't get the response I'm hoping for from the surgeon in my hometown,  I will probably go to Cleveland clinic since they have the highest rated urology department.   I won't mention names, but I won't go the top hospital in my state, due to the fact one of their doctors is the reason I have peyronie's to begin with.  But I have went to the hospital I will going to for a consultation before.  They did a decent job with my 2nd fracture.  Neither me or the doctor thought it was a fracture but he still ordered an ultrasound just to be sure.  So I have some confidence in them.

TDix

Don't stop until you fix yourself.  Sometimes it seems hopeless, and searching the internet endlessly doesn't produce much new information for us, just the same websites over and over.  I will say this place is the only one I've found that provides valuable insight, support, and suggestions for you.  Keep us updated
47 yrs old, 3 yrs diagnosed
Xiaflex w/original uro resulted in a fracture
Excision/grafting by Dr Faysal Yafi 3/26/19
Implanted by Dr Yafi 8/11/20, Titan 20cm + 1cm RTE


Juice

Ok fellas, I'm scheduled for tomorrow morning 9:30 for my excision and grafting surgery. I am going with Dr. David Peters, I'm not even slightly joking when I say I'm scared s?!$less. But two years have passed with all the BS promises of needles (Xiiaflex, interferon and prp) and not to mention the magical GW enhancement program failing miserably.. I finally gave in to the surgery I swore off. But honestly like I'm sure most of you know what this does to your mind and heart.  I was told this is risky long term because of new data just released, in my heart and soul I know this can be fixed. Please cross  your fingers.
55 yrs old. Diagnosed Peyronies Disease Dec 2017 battling with it a bit longer.  Failed xiaflex, Gainswave, PRP..   underwent Excision and grafting May 10th 2019 with Dr David Peters. StonyBrook NY..

TDix

I wish you great success!  I was just cleared for sex today, 6 weeks post op.  There is hope
47 yrs old, 3 yrs diagnosed
Xiaflex w/original uro resulted in a fracture
Excision/grafting by Dr Faysal Yafi 3/26/19
Implanted by Dr Yafi 8/11/20, Titan 20cm + 1cm RTE

Juice

Ok, surgery was yesterday. Almost 6hrs long. The plaque was underneath the urethra so they had to lift and remove then patch. Also performed a plication to the top plaque. Honestly the procedure (for me) wasn't bad however the one thing that I wasn't prepared for was peeing!!!! I knew going in that would be an issue but goddamn!  He said everything went great and now time will tell but he is very confident I will be back to myself in no time flat. Honestly being me is what I miss the most so fingers and everything else crossed!  Dr David Peters of Stonybrook NY is amazing.  I will keep everyone updated in the next few weeks how things go. We all must stick together with passing along this information because the worst part of this entire experience has been the feeling of being completely and utterly alone!  We are not, this is bigger and just as widespread as any other issue. It's just pride mixed with embarrassment that is keeping this quiet. Anybody needs any type of support please feel free like most of us with BS curse I've done so much research I'm sure I can alleviate some fears, worries or some crazy thoughts...  
55 yrs old. Diagnosed Peyronies Disease Dec 2017 battling with it a bit longer.  Failed xiaflex, Gainswave, PRP..   underwent Excision and grafting May 10th 2019 with Dr David Peters. StonyBrook NY..

Juice

Well fellas, it's officially one week post op. Everything seems to be healing accordingly. Couple of notes I'd like to share. After surgery honestly you feel nothing, however, when it comes time to leave they want a sample of pee, this unfortunately (and for the next several days) will be the biggest obstacle! When I say you pee like an old time sprinkler and the pain that accompanied this is like something that's almost indescribable! When they tell you you'll feel a little burning sensation, what they neglect to say it a burning feeling from a blow torch!  Good news after the third day it's almost all gone. The best description of what you will look like is the way I read in a post on this site, "your dick will look like it's been run over by a truck". It's true!  Now I don't want to scare anybody, instead just the opposite, if you were anything like me, this curse has simply destroyed you as a man both mentally and physically. And no matter what I can go through to fix it well "F it" .  So desperate to be me again!  Anyway, sorry I digress, here it is one week  and one day later, the last three days I've been woken up at least three times each night with nocturnal erections. And even though they were insanely painful it was a beautiful welcome home nonetheless!  Now yes they aren't as hard as I would like however I am positive just like any surgery on any muscle rehab will be needed so painful but "F yeah" encouraging!  I am so excited to start being me again!  And if the Dr was telling the truth because of the graphing I will be an full inch longer!  Now I was perfectly happy where I was (always the proudest part of me) but I won't look a gift horse-well you know what I mean.. I am very encouraged about the future. I have read that some surgeries fail after the first few months but I did find one story that was a beautiful and encouraging story calling himself Peyronies Free!  I will deal with anything that is ahead of me and will do it with a smile because I now know I've done everything that is available to fight this horrible affliction!  I want to keep lines open with everyone and anyone that has gone or is going through this, This disease must have more attention to it, I believe it is much bigger than they say simply because of how I kept it to myself because of what it does to your mind. I actually woke up everyday wishing I had cancer instead (I know,but before you judge) I figured that if I had cancer or some other dreadful disease I could wrap my head around it more easily, I could rationalize it with some type of logic, I smoked, I was unhealthy, I did this or that and that's why this happened but to simply wake up one day and be ashamed, embarrassed of the way you look as a man for no reason (that you can remember)  or that you start to hate the way you lived your life because of the time you wasted not banging everything in sight. To stay up night after night thinking you'll never get a chance to again.  Now I know how selfish and somewhat stupid this may sound but if you are reading this post and you're on this page you most likely will understand. I am by in no means comparing the other dreadful things that can happen but to be perfectly healthy and lose the ability to be a man (sexually) is the most painful nightmare come true for me.  I can't explain the amount of fantasies I have had during my manhood and like the lottery it was just that fantasies. But the lottery fantasies you'll always have because you can always play.  I'm not saying that I could've or would've acted on those fantasies but to take that away from a healthy young man.   Anyway again sorry, I digress once again.    I will keep you posted as to the progression of this recovery.
Thanks for listening
Juice
55 yrs old. Diagnosed Peyronies Disease Dec 2017 battling with it a bit longer.  Failed xiaflex, Gainswave, PRP..   underwent Excision and grafting May 10th 2019 with Dr David Peters. StonyBrook NY..

Stepone

Hi Juice,

Just checking in to see how things are going?
When I had my modified nesbit to fix a hinge and L shaped rod, it took a good while for the swelling to go down.
How are you doing?

Stepone
Nesbit surgery 2015, 66 years young, Titan Implant 4/25/19, 22cm, Dr. Lentz, Duke University NC

Juice

Well fellas, ive past the 6 week mark and have an appointment with Dr Peters on Thursday. Let me start by saying I read so much on this I drive myself mad, so if you avoid the insane investigation desire that comes along with this please do. I literally drive myself insane.  Anyway.. all seems to be good from where I was. I still have a ventral curve however it looks more like a banana that the freakish bend I had, the indentations are gone but I can see a slight hourglassing, I phoned my dr several times (which is when he told me to stop surfing the web) but he said  in time it will be straight as long as I keep up the traction therapy (I'm using the restorex mid-evil device). Now the hourglassing I see may be nothing  but I will learn more Thursday.  Guys I feel like I'm seeing the light for the first time in what seems like forever.
I will check back Thursday and let you know.
Oh for what it's worth the new Frankenstein circumcision scar just under the head is something that will keep you worried but also told it will go away.
55 yrs old. Diagnosed Peyronies Disease Dec 2017 battling with it a bit longer.  Failed xiaflex, Gainswave, PRP..   underwent Excision and grafting May 10th 2019 with Dr David Peters. StonyBrook NY..

Stepone

Juice,

Glad you are improving.
....and join everyone else on here by saying "all of us guys are very impatient when it comes to our penis", LOL
It seems we all worry needlessly (sometimes) when all we have to do is wait patiently for our penis to heal.

But I am so glad they got rid of the big bend and hinge.
Hooray for you.

Did you take any pics prior to and after?

I took some preop, but haven't posted finals yet, I need to get the courage.

Stepone
Nesbit surgery 2015, 66 years young, Titan Implant 4/25/19, 22cm, Dr. Lentz, Duke University NC