MY graft surgery and treatment from beginning to end

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Peypt

MY STORY: This is important to read. Has pearls that will help you along the way towards treatment.

My first symptom was I  noticed shortening during intercourse, less penetration. I thought it was my imagination then I started having pain. I realized what was  going on. I am a physician but not a urologist. This was May. I had a regular appointment with my urologist at UPMC Chautauqua the following Januray. ( I am 57 at this time). He could not see me so they put me in with the female CNP. When the LPN took me back, she asked me if I had contracture. I told her no and she said "well, then you don't have peyronies disease". The NP came in to the exam room and asked me the same thing and again told me I don't have peyronies disease. She had me drop my pants and began examining me. I have never had my genitals examined before and I was quite mortified. She examined my testicles first for what seemed like forever. She then grabbed the head of my penis with one hand and ran her fingers along the shaft feeling for scar tissue (plaque) with the other hand. She suddenly jumped back like she had been burned. I reached down and pulled my pants up. This is when I realized I was just starting to become erect. I wasn't aroused. I didn't even know. It was horribly embarrassing. She told me she didn't feel any plaque. ( I could feel it). She said even if I had peyronies disease "there is nothing that can be done about it except Xiaflex injections and it's really painful". "My advice to you is to just forget about it". I left the office wishing I could forget about it. BY October I had significant dorsal contracture making sex  impossible. I went back to the urologist again and they stuck me with the same NP. She came in the exam room and said "I'm not going to examine you because I already told you there is nothing that can be done!" She told me just to keep the January appointment with the urologist. I asked about using traction devices or other things to slow down the progression. She told me they don't do anything. I told her that I was really concerned about the shortening. She told me, "Peyronies disease does not cause shortening! IF you have any shortening it's because you're" (and she the spread her arms real  wide and made a fat face). Yes, she did. Maybe she was mad about what happened the first visit? Maybe she is offended by overweight people? Personally, I think she is just a perfect example of rule number 2! I'm 6'4" and about 280 lbs. I'm built like a football player. You wouldn't look at me and think "fat." This leads me to my advice on CNP's. A urologist usually gets 10 years of post graduate training and school. A NP gets 2, usually with no specialist training at all. If you make an appointment with any "ologist" you should see the Dr for your initial appointment. If you can't, go somewhere else.  I saw the urologist in January. He asked me to show him how bad the contracture is with my bent finger. He suggested starting Xiaflex injections. I was not keen on this. (read about Xiafles under treatments). I made an appointment with the Dr at the Cleveland clinic that is supposed to be the expert on peyronies, Dr Angermeier. On my visit a resident came in and asked me questions and had me show him (bent finger again) how bad the contracture is. The DR  came in and examined me. He stretched my flaccid penis out and said "Look, that's how long it will be after plication surgery." OK.... So six inches may be groovy to him but a loss of 2" not so much to me. He said we would do Xiaflex and then do plication surgery. I had to be fine with that. He is supposed to be the expert. I tried to schedule the injections and they told me they would do it in about 4 months. ( see rule #2). I contacted the first urologist and he was able to start it in about 3 weeks so I set it up. In the meantime, Cleveland sent me  a link to a live webinar on peyronies. I watched the webinar and a young Urologist talked about his experience with graft surgery and how it has a better result with maintaining penis length than plication and how "95%" have satisfactory erections after surgery. I made an appointment to see him in about 4 months. (rule #2 again) In the meantime I began Xiaflex injections. There was no anesthesia or anything just 4 shots into the scar tissue in your penis. I knew it would hurt but I was surprised how much. I did two series of Xiaflex. My penis swelled up so much each time I had to pull the swelling back to pee. I think if anything, it deformed me more. I didn't do anymore. Eventually I had my appointment in Cleveland with Dr Petar Bajic. He told me he wouldn't do anything without examining my erection and doing an ultra sound. This is the most important thing you should remember. This is a disease of the erection. If your Dr doesn't examine your erection than he can not treat it appropriately. Go elsewhere. On that appointment, he injected my penis to make it erect (didn't hurt) and left the room for a few minutes. He came back and examined the firmness of the erection, measured the curvature and then did the ultrasound. Afterwards he injected something to deflate it (it was painful and made feel like I had to pee badly) and squeezed it pretty hard with both hands to deflate it. He told me The curvature was too severe for plication and that I had calcifications and was not a candidate for Xiaflex. This is something that would have been discovered 8 months earlier if either of the first two Doc's had examined the erection. I was scheduled for the surgery. You should read about the surgery in the treatment section if you're going to do it. Forty-five minutes after I left the ultrasound, the erection re-inflated. It was painful and lasted about 90 minutes. I think the pain was from it being squeezed so hard.  Pain was not an issue after the surgery. I got an erection about 4 days after the surgery and pulled some sutures loose. It took a long time for that to heal. Dr Bajic said that getting an erection in the first month  after surgery was uncommon.  After two weeks they had me begin using the restorex traction device an hour every day and begin Cialis 5 mg daily. ( Quit taking the Cialis 3 days before your urology check-up if you want to avoid embarrassment. ) I have a section about Cialis etc. in "treatments". After 4 months, and with the Dr's permission, I began using a vacuum pump once a week. I think it helped with restoring girth and uniformity. Traction once a week after 10 months and then once a month after a year.

Results: It is about an inch shorter when erect.( see the discussion under treatments) The erection is satisfactory. I had no loss of feeling after the surgery.  Something to keep in mind is that most urologists have no actual idea how many people have satisfactory erections after surgery because they only go on anecdotal evidence. He never actually examined my erection after surgery. Keep this in mind when a Dr tells you he has great results with Xiaflex. Ask them: How many of those did you examine erect before and after treatment. Why haven't you examined me erect? How do you know my curvature is not too severe for Xiaflex or if I have calcifications? Read the treatments section. Much more important info.
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PhillipG

Did it hurt to use the restorex over the incisions made from the surgery after only 2 weeks?  I feel like the way the RestoreX has to clamp down on you while tension is being applied would be painful since it's directly over the circumcision/bottom of the glands area.  
Were there any special instructions he gave you while using the RestoreX? Would you do the entire hour continuous or 30 minute intervals?
Which model vacuum did you buy?
And do you know which type of graft material he used? SiS or Pericardial?

I think you're smart for waiting and getting a second opinion - I chose to do the same because I felt that Xiaflex wasn't appropriate to even start if not out of the acute phase, so for me that was at least 18 months from initial onset. I also saw Dr Bajic and he was the only one that gave me an ultrasound while he used Trimix injections to induce an erection. However, Dr Angermeier did have an MRI done for additional imaging and sent the excised scar/plaque from surgery to be tested and it was benign thankfully.  Dr Angermeier said to wait on using restorex until my 2 month post op appointment so that will be at the end of September/Early October.

Thank you for taking the time to write all of this out, I think it will help a lot of people if they take a minute to read it.  Hope your recovery is going well!
29
Married
First noticed symptoms 11/2022, diagnosed 03/28/2023
Lateral curve to right 65 degrees
RestoreX 3-4 months; PEG w/SIS graft & Plication 08/09/2024
Dr. Kenneth Angermeier Cleveland Clinic Main Campus