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Author Topic: Congenital Curvature - The Whole Story  (Read 1773 times)

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dancingaileron

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Congenital Curvature - The Whole Story
« on: November 12, 2019, 08:15:02 PM »

Hi everyone,

I'm going to update this thread with my experience fixing my apparent birth defect. I'm 36 years old and have lived with this long enough that I have to take action. My curvature is not severe, but it is worse than some other people who've posted on this site. Functionally, I am right at the threshold of being okay. Cosmetically, my penis is warped and twisted. I am circumcised. Conservatively, I have measured my deformations to be between 20° and 30° leftwards, and between 15° and 20° downwards (ventral). There is also torsion, and an abrupt "hinge-effect" mid-penis. This, according to Dr. Tom Lue, of UCSF, is not Peyronies, but congenital.

I want this to be fixed, and surgery is my only option.

As of today, I've had two consultations at UCSF. Dr. Tom Lue conducted an ultrasound and determined that there was no plaque and that this was a congenital defect. He recommended permanent suture plication (plication only) and let me know that he no longer performs surgery, but his colleague Dr. James Smith does.

I returned to the Urology Clinic at UCSF the next week to meet the surgeon. He inspected me and again recommended permanent sutures on the right side (the longer side) of my penis, and (along with dissection of the neurovascular bundle) the top to correct the downward (ventral) bend.

I spoke with both Dr. Lue and Dr. Smith about my concerns of permanent sutures. They told me that some people do find them bothersome, and that nodules of tissue can form around them causing "bumps" at their placement sites. Steroid injection for painful nodules was their recommendation. In a worst case scenario, the sutures could be removed, which would revert the penis back to its naturally crooked position.

On Friday, I will fly an hour to Orange County to meet with Dr. Joel Gelman, who has a different surgical technique and philosophy regarding my situation. In contrast with Dr. Lue's and Dr. Smith's method of suture plication, Dr. Gelman performs excision and plication (Nesbit) with dissolvable/absorable sutures. From what I've read regarding studies, complications are similar in both methods, but excision and plication (Nesbit) is more invasive and much more complex and time-consuming.

Dr. Lue and Dr. Smith would be "bunching" parts of my tunica albuginea with knots in order to straighten the penis - dorsally and laterally. Whereas Dr. Gelman would removing tissue in elliptical excisions (both layers of the tunica albuginea and down to the corpum cavernosum) and then closing the ellipses with absorbable sutures. The idea is that the excisional re-shaping would heal to be a permanent fix (i.e. straighten the penis without sutures forcing it into the correct position).

I haven't met Dr. Gelman yet, but I sent a message to his office through his website on Friday night of last week. To my extreme surprise, Dr. Gelman called me about 30 minutes after I sent the message and spent 30 minutes on the phone with me explaining his philosophy. This is not normal for most physicians. Because of his extraordinary interaction with a stranger-patient who wrote in to his website, I'm paying $500 to fly down to L.A. for the day to see him in person, bringing along photographs of my erection so he can judge.

So far, between the two methods, here's my takeaway:
A) Dr. Lue / Dr. Smith - plication only: permanent palpable sutures, quick and easy in the OR,
B) Dr. Gelman - excision and plication: more complex, longer surgery, no permanent sutures that force the penis straight

This is the beginning of my journey. I'm not sure what I will do next, if I will get surgery, and if so, with whom, but I will keep posting my updates here.
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36 years old; USA; Congenital penile curvature (leftward 30 degrees, downward 20 degrees); diagnosed by Tom Lue; Surgery is scheduled with Joel Gelman in July 2021

this_day

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Re: Congenital Curvature - The Whole Story
« Reply #1 on: November 12, 2019, 10:26:10 PM »

It’s great that you’re taking action and doing research on the issue.

I had plication surgery done in my 20s, and 6weeks after felt a pop within my penis.
This was a suture that popped - it was one of the most terrifying feelings I’ve had, esp. after dealing with this issue for half of my life.  I had a 2nd plication surgery done with the same dr 6 months later and it too failed.

Years after this experience, I decided that it was time to do it right.  I went with a different doctor who specialized in Nesbit surgery.  We went ahead with surgery and I have been happy with the results ever since.

I feel that the sutures in the plication technique are prone to failure.  Just my experience, keep researching and you’ll find what is best for you.
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mst1622

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Re: Congenital Curvature - The Whole Story
« Reply #2 on: November 13, 2019, 06:48:23 AM »

This day,

You had pernament sutures?

Absorbable sutures does not pop
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Jack1909

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Re: Congenital Curvature - The Whole Story
« Reply #3 on: November 16, 2019, 04:57:06 PM »

 I can’t believe you have been offered a surgery for a 30 degrees curvature..are you really thinking to go for it?

Straightening surgeries make more problems than they solve. The only reason they still survive is the fact people are not prone to step out and say out loud what this surgery does. Intimacy and shame have been the best friend of Nesbit, plication and all the names they have been given..with the same result.

This_day you have been extremely lucky to get out of your third surgery ok and without Erectile Dysfunction. For many it takes just 1, but it’s all written in literature. patients experiencing Erectile Dysfunction after a straightening surgery are 1/3.

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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

dancingaileron

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Re: Congenital Curvature - The Whole Story
« Reply #4 on: November 16, 2019, 06:54:08 PM »

Both Dr. Lue / Dr. Smith and Dr. Gelman recommended surgery -- the difference being permanent suture plication (no excision) vs. Nesbit.

I haven't decided if I'm going to do it yet because of course I'm scared, but I am leaning heavily towards Dr. Gelman.

I met him yesterday and spent probably 40 minutes with him in person at UC Irvine Urology. He didn't tell me anything new since we had already spoken on the phone for 30 minutes but he did examine me and had a residency physician in attendance.

He seemed to think that while my curvature is on the minor end of the "problem scale", it would be beneficial for me to have a straighter erection. Again, it's the combination of both leftward and downward that causes me problems - sexually and psychologically.

I am concerned about complications but I think my surgery would be relatively straightforward and much less invasive than a severe case of Peyronie's. I probably need three excisions/plications to have a normal penis.

Dr. Gelman made an interesting comment that as someone who was born with this condition, I don't know what it's like to even have a normal / straight penis. He explained that men with with Peyronies Disease have something to compare, I've only ever known a bent/crooked/curved penis and I've done my best to get by with it.

He also tempered my expectations by explaining that depending on what he sees after degloving, it's possible that I will still have curvature as his job is to fix the problem - not cosmetic surgery.

I had a pre-surgical examination with the UCI Urology team and they are going to call me sometime next week to discuss scheduling surgery.

I'm still undecided, but honestly at this point I might just do it. I've been dealing with this since I became sexually active - actually even before that, some friends in elementary school noticed that it was crooked - and now I'm 36. I feel like it's time...
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36 years old; USA; Congenital penile curvature (leftward 30 degrees, downward 20 degrees); diagnosed by Tom Lue; Surgery is scheduled with Joel Gelman in July 2021

dancingaileron

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Re: Congenital Curvature - The Whole Story
« Reply #5 on: November 16, 2019, 06:56:15 PM »

@this_day -

Who did your plication?

How would you compare the experience of having a) permanent plication (that eventually failed) and b) having nesbit excision plication (I'm assuming here).
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36 years old; USA; Congenital penile curvature (leftward 30 degrees, downward 20 degrees); diagnosed by Tom Lue; Surgery is scheduled with Joel Gelman in July 2021

mst1622

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Re: Congenital Curvature - The Whole Story
« Reply #6 on: November 16, 2019, 11:33:08 PM »

I can’t believe you have been offered a surgery for a 30 degrees curvature..are you really thinking to go for it?

Straightening surgeries make more problems than they solve. The only reason they still survive is the fact people are not prone to step out and say out loud what this surgery does. Intimacy and shame have been the best friend of Nesbit, plication and all the names they have been given..with the same result.

This_day you have been extremely lucky to get out of your third surgery ok and without Erectile Dysfunction. For many it takes just 1, but it’s all written in literature. patients experiencing Erectile Dysfunction after a straightening surgery are 1/3.

This is of course not the true. I had failed surgery in Poland and then I had redo surgery with dr Gelman. I dont know why, but erectile function after second surgery is the best one in my life.

The main problem is: get the surgery with the well recognized and experienced surgeon! In the other case, you risk your life.
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Jack1909

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Re: Congenital Curvature - The Whole Story
« Reply #7 on: November 17, 2019, 01:28:15 AM »

That’s the true, literature itself says it clear. The proportion of people getting trouble from straightening surgeries is exceptionally high.
I’m glad you had a good outcome but that doesn’t mean anything. I’ll post European guide lines on it once and for all.

Just for the record, the surgery got me almost total impotent was performed by an high volume surgeon the name of has been done a lot on this forum.
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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

kusher

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Re: Congenital Curvature - The Whole Story
« Reply #8 on: November 17, 2019, 05:00:50 AM »

I finally have a straight penis after 3 surgeries for congenital curvature. However my journey to attain the straightness was not smooth at all. just to get a functional straight penis, I got chronic complications from all these surgeries including but limited to loss of length and girth, loss of skin and sensation, <--------- all these complications are soft to swallow. with that being said, the worst complication I got so far is from the unknown the so called stage surgery. this operation caused significant distal flaccidity and permanent suture. all in all, I have a straight penis with 70-90% functionality and hence the instability and medicore sex
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Jack1909

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Re: Congenital Curvature - The Whole Story
« Reply #9 on: November 17, 2019, 08:53:43 AM »

It looks like people struggle to understand that 99,9% of people undergoing this surgery don’t even get close to this forum. Let’s put Gealman is a genius, he still operates an irrelevant amount of people in need to be treated. 

And this forum is not the holy grail itself. Got in touch with Kuehhas trough it and the rest is history. Will post some pictures in the coming days in order to prove I’m not a clown as many think.
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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

TonySa

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Re: Congenital Curvature - The Whole Story
« Reply #10 on: November 17, 2019, 01:56:36 PM »

If I had to have surgery for a cogenital curve, I would trust Dr Edward Karpman in Mountain View.  That said, there can always be side effects so I would always encourage someone with a healthy curved dick to reconsider it.  Dicks, as people come in all shapes and sizes...healthy and workable being the important factor.
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PxD 2 yrs 9/16.  Failed all treatment. 9/11/18: excision, grafting & implant Dr Karpman MtnView Ca, AMS CX 18cm + 3-1cm RTEs.
Pump failed.  2/11/20 Dr Karpman installed Titan 22cm +1cm RTE.

Jack1909

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Re: Congenital Curvature - The Whole Story
« Reply #11 on: November 17, 2019, 04:23:05 PM »

That’s the spirit. Most of the surgeries are done on guys with curvature feasible for sex.
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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

djordj

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Re: Congenital Curvature - The Whole Story
« Reply #12 on: November 18, 2019, 08:04:29 AM »

I finally have a straight penis after 3 surgeries for congenital curvature. However my journey to attain the straightness was not smooth at all. just to get a functional straight penis, I got chronic complications from all these surgeries including but limited to loss of length and girth, loss of skin and sensation, <--------- all these complications are soft to swallow. with that being said, the worst complication I got so far is from the unknown the so called stage surgery. this operation caused significant distal flaccidity and permanent suture. all in all, I have a straight penis with 70-90% functionality and hence the instability and medicore sex

stage surgery has permanent sutures?
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FlavioSousa

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Re: Congenital Curvature - The Whole Story
« Reply #13 on: February 26, 2020, 04:49:41 PM »

Doctor Tom F. Lue is one of my heroes, I've never met him in person but I know his work and I'm sure you're in great hands.

One question: if there's no plaque, what causes congenital curvature?
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thecrookedone

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Re: Congenital Curvature - The Whole Story
« Reply #14 on: December 31, 2020, 01:27:37 AM »

dancingaileron : Have you gone ahead with the surgery ? please share your experience. Im considering Dr Gelman too because he doesnt use permanent sutures

mst1622 : I have sent you a pm
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Age : 35
Congenital Penile Curvature. Ventral. 60-70 degrees.
Erectile Dysfunction
Low Libido

Anton36

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Re: Congenital Curvature - The Whole Story
« Reply #15 on: December 31, 2020, 05:17:30 AM »

it is too funny. You do not have an erection problem. Your curvature is good for sex. But you want to operation. I am sorry for you
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age 25
first symptoms: Flaccid Pain
official diagnosis 2017 after ultrasound
treatments tried All oral drugs

dancingaileron

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Re: Congenital Curvature - The Whole Story
« Reply #16 on: June 05, 2021, 06:39:29 PM »

Hi everyone,

Sorry for being MIA for 2020 (Covid really messed up my whole year).

I am scheduled for curvature correction next month with Joel Gelman.

I'll post more updates after the pre-op visit in a couple weeks.
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36 years old; USA; Congenital penile curvature (leftward 30 degrees, downward 20 degrees); diagnosed by Tom Lue; Surgery is scheduled with Joel Gelman in July 2021

Alex83

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Re: Congenital Curvature - The Whole Story
« Reply #17 on: June 05, 2021, 09:21:09 PM »

Your testimony will be really precious to us! I hope that everything will go well, but I think that everything will go well
I plan to see Gelman but at the end of the year, have you scheduled your surgery?
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24 yo

2020: Nesbit surgery for a 55 degrees downward curvature with DrFaix
Result: Residual curvature of 30 degrees and an inflammatory scar

2021: I am considering a new surgery

I lost 2 cm during my Nesbit, I have regained 2 cm with traction

dancingaileron

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Re: Congenital Curvature - The Whole Story
« Reply #18 on: June 10, 2021, 07:54:53 PM »

Your testimony will be really precious to us! I hope that everything will go well, but I think that everything will go well
I plan to see Gelman but at the end of the year, have you scheduled your surgery?

Alex - surgery is scheduled for the beginning of July. I'll post a ton about how everything goes and how I heal, how the results go. Just nervous now.
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36 years old; USA; Congenital penile curvature (leftward 30 degrees, downward 20 degrees); diagnosed by Tom Lue; Surgery is scheduled with Joel Gelman in July 2021

Alex83

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Re: Congenital Curvature - The Whole Story
« Reply #19 on: June 11, 2021, 09:31:09 AM »

Alex - surgery is scheduled for the beginning of July. I'll post a ton about how everything goes and how I heal, how the results go. Just nervous now.

Thanks again for your answer!
I think that everything will be fine, I already had my first surgery a year and a half ago, the pain was much less than I imagined at the beginning. The mental pain caused by this curvature is much more unbearable.....

In any case you have my full support!!
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24 yo

2020: Nesbit surgery for a 55 degrees downward curvature with DrFaix
Result: Residual curvature of 30 degrees and an inflammatory scar

2021: I am considering a new surgery

I lost 2 cm during my Nesbit, I have regained 2 cm with traction
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