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Welcome to Dr. Landon Trost - Directly answering member questions in the "Medical Professionals" section below the Treatment boards. https://www.peyroniesforum.net/index.php/topic,16512.0.html

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Author Topic: Congenital Curvature: A pre/post surgery journal  (Read 4589 times)

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Lostatsea

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Congenital Curvature: A pre/post surgery journal
« on: June 29, 2012, 08:18:26 PM »

Hi,

I first posted a thread here several months ago (it's a long story which I shall explain as briefly as I can below) and I have since been diagnosed with Congenital Curvature, with a surgical appointment to correct the curve pencilled in for next week.

I intend to use this thread to document my thoughts, feelings, anxieties(!) and experiences pre and post surgery. Hopefully, this will help others in similar situations to understand what they can expect and the options available to them. Information is so scarce and this site is a precious resource; this is my way of saying thanks!

So, first things first...

About Me
19
UK
Congenital Curvature, dorsal (upwards) of around 55 degrees when erect.

Background
I've always been aware of the abnormality for as long as I can remember. My coping mechanism was to live in total secrecy and denial, avoiding contact with girls, etc. etc. Last summer, as an 18 year old approaching 19, I realised I had to do something about it, if only to clarify what exactly I was up against. I made an appointment at my local GUM clinic who referred me to the Urology department.

Unfortunately, my experience with my first urologist mirrors that of many others on here. I went there seeking advice, reassurance and a plan of action and ended up leaving distraught and more anxious than ever as a result of his inexperience and general lack of interest to find others who could help where he so obviously could not. The crux of his opinion (without ever confirming the nature/seriousness of my condition) was "wait and see, get out there and give it a go".

Unsatisfied, I made an appointment with my GP, whose manner was a lot more consolatory. After viewing a photograph, he agreed the curve was indeed something to be concerned about and suggested seeking a second opinion. In the interim, I had carried out far more extensive research and read up about Congenital Curvature, which seemed to fit my symptoms better than Peyronie's - I'd had it for as long as I can remember, the curve is gradual rather than starting at a point and the lack of scar tissue. I also found a thread here that suggested the best urology departments throughout the world. In the UK, Mr Ralph's team at UCLH seemed highly recommended.

I made the decision to arrange my next appointment at UCLH and travelled down to London in March. There I met with Mr Amr Mohammed who gave the impression of someone who has seen cases such as mine a hundred times before. After an examination (and confirmation of the diagnosis of Congenital Curvature), he suggested correction of the curve via the Nesbit procedure.

I believe surgery is the only option available to correct Congenital Curvature and obviously it is not a decision to be taken lightly. There are risks, as with any surgery, and it's irreversible. However, I felt as though I had reached the point where I understood the nature of my condition, that I was confident without surgery I would be unable to lead a "normal" sexually active life and, crucially, I have faith in the opinion and ability of the team of UCLH.

My surgery is scheduled for Wednesday next week.

As of 30/6/12
I had my pre-assessment tests (which thankfully went ok) this week and I have also started a course of Cyproterone Acetate, as prescribed by UCLH. Just working on kicking the remnants of a vicious cold I've had since Monday. Typically bad timing!

And that's where I am as of now. Please don't hesitate to respond with any questions or comments and I'll try to update as regularly as possible. :D
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james1947

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Re: Congenital Curvature: A pre/post surgery journal
« Reply #1 on: June 30, 2012, 01:17:02 AM »

Lostatsea

I can just say that I am appreciating your decision of taking your future in your hands, even that you are just 19 year old.

Wish you successful surgery and fast recovery.

Appreciate also your willingness to share your experience with the forum.

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

Lostatsea

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Re: Congenital Curvature: A pre/post surgery journal
« Reply #2 on: July 06, 2012, 03:59:01 AM »

Update #1 - 06/07/12

A quick note to say that I'm out of hospital after surgery. Obviously, things ain't pretty (but improving) and I'm drugged up on painkillers, so I will report back with a fuller update in a week oir so.

Pleased this part is over at least.
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Luciano

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Re: Congenital Curvature: A pre/post surgery journal
« Reply #3 on: July 06, 2012, 06:01:15 AM »

Thumbs up.. wish you all the best!
Luc
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midnightninja

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Re: Congenital Curvature: A pre/post surgery journal
« Reply #4 on: February 10, 2016, 09:29:18 AM »

Update #1 - 06/07/12

A quick note to say that I'm out of hospital after surgery. Obviously, things ain't pretty (but improving) and I'm drugged up on painkillers, so I will report back with a fuller update in a week oir so.

Pleased this part is over at least.

How did it all go?
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Jack1909

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Re: Congenital Curvature: A pre/post surgery journal
« Reply #5 on: February 10, 2016, 10:02:30 AM »

30/6/12..just a couple of day earlier the nesbit that destroyed my life. Never recovered or improved enough after that, hope you ended up better than me.
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31 yrs old
Severe congenital curvature. 3 straightening surgeries
Big lump/stitch w/ left deviation after 2012 surgery
Severe Erectile Dysfunction after last one in 2014. Still crooked
Slightly improved w/ shockwave therapy
Looks like only one side of my penis works

james1947

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Re: Congenital Curvature: A pre/post surgery journal
« Reply #6 on: February 10, 2016, 03:06:04 PM »

midnightninja

Lostatsea was last active at July 31, 2013
I don't thin you will get some answer from him :)

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