Experiences and Outcomes for PEG Surgery - 27yo Support and Insights

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JZChemist90

Hello All,

This is my first post, but long time follower.  I want to introduce myself and see if any of you are willing to share your experiences, both progress and results post-op.  

I am a 27 yo that went through a physical corporal rupture back in 2015, know your stroke - I get it 😑, any who, I didn't experience any of the normal signs other than painful erections for a few weeks.  Fast forward, about 9 months later I went to a urologist who started me on verapamil since I only had a left lateral curvature of roughly 30/35 degrees.  This unfortunately didn't help, so my urologist recommended a colleague of his to start on Xiaflex.  I began my treatment at the latter end of 2016.  First shot, great, second shot, hematoma, not great.  Went to the ER since it developed spontaneously at midnight - that ER surgeons face was priceless.  I did get in to see a urologist that morning (not my primary since he was away) and the response was, "it's typical for this type of shot, that's why you don't stick needles down there."   My primary Uro did not see the hematoma so, we went forward with the second set of shots.  Of course, it happened again at night.  This time I wasn't going to be a hypocondriac, so I waited it out until the morning and went in to my uro to have him check it out for himself.  Well, this go around I was that very small percent with a major side effect -long story short - he released the hematoma (size of a grape) and went straight into emergency surgery due to, you guessed it, a second corporal rupture.  Since at this point I was leary on my uro, I just wanted it sutured, obviously discontinue Xiaflex, and let it heal.  This all took place December 2016.  Healed great, but created an upward bend at about 30, leftward lateral curve at 35 still, with hourglass and hinge mid shaft; all defects occurring mid shaft.  That said, I took to the boards to do some research, and lucky for me I live in the Chicago area, so Levine was my guy. I know this is bad practice, but during my surgery healing I switched over immediatly to Dr. Levine.  All we could do was start some traction therapy and go from there (Feb. 2017).  Started on the recommended penimaster pro, but since much of the disease occurred midshaft to the glans, this was definitely a hard and painful task.  The disease settled, did not worsen or better itself over time.  Later in the year, I went through another ultrasound with Dr. Levine and discussed options.  EQ is great, blood flow amazing, no calcifications but the hinge effect really freaked me out during sex.  The ease of my member slipping out was there, and that put fears in my head just like anyone whose experience this scenario.  Taking all this into consideration, Dr. Levine and I chose to move forward with partial excision and grafting surgery for Feb 2018.  My expectations to the doctor were very clear, try to fix the hinge affect as best as possible and please please please let my 27yo member still function properly; at this point in my life after so much trauma, the thought of being perfectly straight or completely filled out was my leaset concern.  I found out post-op at Rush, upon excising the plaque and damaged tissue from the Xiaflex shot, the original graft (cadaver pericardium) was too small for the amount of tissue removed.  They had to specially size a larger graft (same material) to fit the entire area that was excised.  At the point of coming to, doc said it was a success but a very difficult 3 1/2 hours of work.  I was ecstatic and relieved.  The only extra procedure they performed was an additional dissolvable plication on the right side to help counteract the hinge affect.  I've recently completed my 3 month follow-up and all seems to be healing well (on their end).  That is the end of my story, so here are my questions.

Once I removed banadges back in February, I still had hourglassing, complete narrowing of the entire shaft, except at the base and the circusicion area, and 25-35 degree curvature laterally left.  This is still true to this day.  Doc has great bedside manners, but as a person that can take blunt criticisms, I'm not sure if the 9-12 month outcome period remark he gave me was to keep optimism alive or if this is the honest truth.  It sounds to me those that have posted on here have seen their main results immediately following surgery.  Now granted, I know everyone heals differently and not everyone posts their own experiences, so I do understand this; hence why I am reaching out to the community.  What are the consensus on this?

Also, my EQ is great at the base, that's about it.  It still becomes a erect, but rigidity is not there.  Doc made This sound quite the opposite post-op.  I am still taking 5mg Cialis daily, switched from Zoloft(I think this was definitely not heping) to Viibryd.  But as a 27yo, whose fortunate enough to have great insurance benefits, is damned when it comes to Cialis - especially after Eli Lilly's salty response to the patent expiration in which no more savings cards (saddens me as a chemist) - There is no way any insurance company would be persuaded that a 27yo medically needs a one-a-day Cialis and I do not want to go through online pharmacies - my health is important to me and I'll bite the bullet knowing exactly what and where my pills come from.  That all being said, is there hope that my EQ is not heading toward an ED scenario and/or will it ever improve? I know you guys don't have a magical crystal ball, but just looking for insight on your own experiences.

Last remark, I have every name brand traction/PE devices except for the Restorex, best in my opinion (do not take this as a sales comment, it's a recommendation since it is the comfiest one I have exerienced) is the Phallosan Forte.  I wear it Mon - Fri for 12 hours with breaks in between to use the washroom.  I have also modified my penimaster backplate to fit the Phallosan bell and place that on my sizegenetics rod system for directional PE - it's basically a penimaster pro but you honestly would be surprised how much more comfortable this is - and wear that for another 2 hours once I am home.  I take Sat and Sun off for rest and rehabilitation.  I definitely get my stretching and directional healing in.  I was advised not to pump/water pump since doc says there is no significant data that suggests this will help heal and correct any of the defects as well as it may lead to a hematoma under the graft.  I know many of you would disagree with some of this, but I need to follow docs orders.  Any  personal input on this would be beneficial and appreciated.

I think that sums up my extremely long and boring post, but I really do appreciate any and all your time reading this and sharing your personal experiences or input on what I can improve on.  I do believe I, and everyone else who has this dreaded disease, can beat this.  Thank you so much everyone for being such an amazing and supportive community and look forward to your responses!

John

james1947

JZChemist90

The reason you are not getting answers to your post is in my opinion that it is too detailed.
Because of too many trees can't see the forest :)

First, sorry to read about your ordeal.
I think you are in good hands with Dr. Levine that is much appreciated around here.
This is the reason that in my opinion you made the right thing by changing horse in the middle of the river (usually a bad idea :) )
But no body is perfect, and the time line of 9 - 12 months is too long in my opinion, results are seen much earlier in my opinion.
I am sure Dr. Levine will know what to do after the 12 months if the problems are not solved out.

Have many forum members that had a surgery like yours, maybe someone will chime in.
Proposing you to post (on this topic) a more short post with the essentials of your ordeal

James
Age 71, Peyronies from Jan 2009 following penis fracture during sex. Severe ED.
Lost 2" length and a lot of girth. Late start, still VED, Cialis & Pentox helped. Prostate surgery 2014.
Got amazing support on the forum

pey ron

Quote from: JZChemist90 on May 23, 2018, 10:46:17 AM
Last remark, I have every name brand traction/PE devices except for the Restorex, best in my opinion (do not take this as a sales comment, it's a recommendation since it is the comfiest one I have exerienced) is the Phallosan Forte.

I just got the lingam extender. They claim they're an improvement on the phallosan forte, but I have never tried the PF because it's much more expensive
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