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Author Topic: Congenital Curvature - The Whole Story  (Read 3075 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 completed 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 completed 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 completed 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 : 36

Congenital Penile Curvature. Ventral. 60-70 degrees.
Low Testosterone
Erectile Dysfunction
Low Libido

Medical History :
DVT and PE - Mar 2020
Primary Anti-phospholipid Syndrome - Aug 2020

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 completed 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 completed 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

thecrookedone

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Re: Congenital Curvature - The Whole Story
« Reply #20 on: July 01, 2021, 11:51:41 AM »

dancingaileron : that is great. I suppose it's this week then. Wish you the best. Please share your progress, it will be very useful for me and other members considering Gelman
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Age : 36

Congenital Penile Curvature. Ventral. 60-70 degrees.
Low Testosterone
Erectile Dysfunction
Low Libido

Medical History :
DVT and PE - Mar 2020
Primary Anti-phospholipid Syndrome - Aug 2020

GaussRifle

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Re: Congenital Curvature - The Whole Story
« Reply #21 on: July 01, 2021, 12:45:50 PM »

The crookedone, are you considering plication with your 60 to 70 ventral curve along with Erectile Dysfunction ?
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26 year old
45-50 degree downward curve with an indentation on one side when erect.
Using RestoreX and Xiaflex injections
Taking coq10 with daily Cialis 5mg.

dancingaileron

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Re: Congenital Curvature - The Whole Story
« Reply #22 on: July 04, 2021, 11:55:16 AM »

UPDATE - I did the surgery

Currently “recovering” in my hotel right by the hospital. The last few days are foggy because of the general anesthesia (apparently it affects me a lot) but I will go though my experience as best I can!

In short, I feel fine right now with zero pain and I’m not taking any medications. I’m 3 days out since the surgery with Dr. Gelman.

I flew down to Irvine on Tuesday because I had to get a COVID PCR test before the surgery. It was negative. If it had been positive, they would have rescheduled the surgery.

On Thursday, I checked into the hospital at 6:30 AM and did the final paperwork. I also paid a portion which my insurance required (deductible).

Around 7:00 AM I went up to pre-surgery area and got into my gown etc. They asked a bunch of confirmation questions, took vitals, inserted my IV, and prepped me for surgery.

Dr. Gelman and his residents came and saw me to give me a summary of what to expect. I was nervous but happy this was finally happening.

They gave me a very strong benzodiazepine immediately before rolling me into the surgical theater and I remember getting on the table. The last thing I remember is inhaling an anesthesia vapor.

I woke up around 1:00 PM, meaning the surgery was probably a total of about 2.5 to 3 hours. Dr. Gelman briefly came and told me everything went fine and then they took me to the observation area. This is all very blurry since I was still affected by the drugs.

I had to stay overnight which sucked (I didn’t sleep at all) but I was not in any pain. The only discomfort I had was from the drain that was removed the next day by one of the residents. I asked the residents how the surgery went and they also said “it went well” and “looked good”. So at this point, it’s a waiting game to see the final correction. Dr. Gelman also checked on me immediately before I was discharged (around 10 AM on Friday).

I will see Dr. Gelman again on Tuesday to check the incision, but I just removed the clear dressing that had been on since surgery and everything looks fine - albeit swollen. This was expected. There is NO bruising! Which is very surprising to me.

In summary, no pain, no bruising, clean incision (perfectly restitched), moderate penile swelling. The worst part was laying in the observation room unable to sleep and listening to other patients around me cough / talk on the phone.

I will update again soon!
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36 years old; USA; Congenital penile curvature (leftward 30 degrees, downward 20 degrees); diagnosed by Tom Lue; Surgery completed with Joel Gelman in July 2021

Alex83

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Re: Congenital Curvature - The Whole Story
« Reply #23 on: July 04, 2021, 01:49:59 PM »

It's great that you don't have any bruises!
You got through the worst of it! Good recovery!

Would you be willing to provide pictures? A before and after
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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 #24 on: July 06, 2021, 11:34:21 AM »

Thanks Alex83 - YES! I will post before an afters in the appropriate forum here but it will be at least 6 weeks before I can take new photos (instructions are no sexual activity for 4 weeks but I'm gonna hold out for 6).

Also as of today, swelling is down significantly (but more on the side where the plications were) and the incision is healing well.

As soon as the stitches dissolve, I plan on applying a silicone scar sheet to reduce scarring as much as possible.
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36 years old; USA; Congenital penile curvature (leftward 30 degrees, downward 20 degrees); diagnosed by Tom Lue; Surgery completed with Joel Gelman in July 2021

Alex83

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Re: Congenital Curvature - The Whole Story
« Reply #25 on: July 07, 2021, 03:46:07 AM »

Thanks to you!

You're absolutely right, the silicone sheets will give you a beautiful scar! Are you circumcised? If not, it might be difficult to make the sheets stick.

I would also advise you not to keep the sutures more than 3-4 weeks if they don't fall out by themselves.
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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 #26 on: July 07, 2021, 01:37:20 PM »

I am circumcised so the silicone shouldn't be a problem. If you're uncircumcised I think the scar will be hidden by your foreskin anyway and it would basically act to protect the incision negating the need for silicone (not sure).

If the stitches are not out in a couple weeks, I will take them out to prevent any weirdness. I know the stitches have to be out before I start doing the silicone.

Also, update as of today (6 days post surgery):
  • swelling continuing to resolve
  • incision looks almost completely healed on the front of the penis
  • underside still has some incision swelling, red marks
  • left side of incision is "puffy"
  • no pain, I have not used any medication since leaving the hospital
  • I'm using red light (660nm) over the incision daily to promote healing
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36 years old; USA; Congenital penile curvature (leftward 30 degrees, downward 20 degrees); diagnosed by Tom Lue; Surgery completed with Joel Gelman in July 2021

dancingaileron

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Re: Congenital Curvature - The Whole Story
« Reply #27 on: July 10, 2021, 10:41:49 PM »

Hi everyone - I'm healing well and penile swelling is gone. The incision is still "puffy" around half the penis (the left side and underside). No pain or discomfort at this point. I've refrained from getting a full erection (that I'm aware of) but partial erections are straight. I'm posting an edited (for privacy) copy of Dr. Gelman's surgical notes that are in my file which I think all of you might find useful / interesting:

Quote
DESCRIPTION OF PROCEDURE: The patient was taken to the operating suite where he underwent general anesthesia and then he was prepped and draped in the supine position with appropriate padding and pulsatile stockings.

Once he was prepped and draped, I created an artificial erection by infusing saline through a 19-gauge butterfly needle that entered the tip of the corpora via the glans with simultaneous compression at the level of perineum. As the erection was developing, there was downward curvature at the mid shaft, but once the penis was fully erect, then it became more apparent that the main curvature was leftward but with moderate downward orientation mostly along the midshaft of the penis which is consistent with the findings of the pictures that the patient presented with.

He underwent a circumcising incision and this was carried down to Buck's fascia with a 15 blade scalpel, and the penis was degloved to the base along an avascular plane. It became apparent that with curvature to the left, the right neurovascular bundle would be elevated and this was just lateral to the corpus spongiosum where we created an exposure of the tunica albuginea after which we were able to reflect the neurovascular bundles along the right side towards the dorsal aspect of the penis under optical magnification without the use of a tourniquet. At no point did we enter any vessel or other adverse structure.

We obtained nice exposure of the tunica albuginea, and placed a temporary plicating suture along the mid shaft along the lateral aspect of the corpora with a slight dorsal orientation that would likely correct the downward curvature. We repeated the artificial erection, and this provided good but not totally complete straightening. We placed a second plicating suture more proximally and this corrected the curvature. We then converted one of the temporary plicating sutures to a permanent wedge excision with 2-layer closure. The wedge was less than 1 cm in width and the closure was with several interrupted 4-0 PDS sutures, followed by running locked PDS suture.

We repeated the artificial erection and confirmed the correction. Therefore, we repeated a permanent plication of the other area with wedge excision and then subsequently confirmed that the penis was straightened. We then placed the neurovascular bundles along the normal anatomic position where the tissue adjacent to the corpus spongiosum was re-sutured in place with interrupted 5-0 Vicryl suture. The wound was irrigated and hemostasis was excellent. A TLS drain was placed superficial to the neurovascular bundles and this exited the suprapubic area and was secured with a 3-0 chromic suture.

 wound was closed with interrupted 5-0 Vicryl suture. A Bioclusive dressing was placed, and this was carried distal to the coronal margin, and a 2-inch Kling dressing was placed for temporary gentle compression. The patient was catheterized, emptied the bladder, and the catheter was then removed. The patient tolerated the procedure well and was taken to recovery room in stable condition.
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36 years old; USA; Congenital penile curvature (leftward 30 degrees, downward 20 degrees); diagnosed by Tom Lue; Surgery completed with Joel Gelman in July 2021

thecrookedone

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Re: Congenital Curvature - The Whole Story
« Reply #28 on: July 12, 2021, 03:12:25 AM »

GaussRifle : not at the moment. my issue with Erectile Dysfunction also seems to be psychological, the doc said he can fix my curve but cannot fix my psychological issues. i want to work on my other issues before deciding on plication, like low T for example. there is no point going for plication if my psychological issues are not addressed.

dancingaileron : thanks for your updates , wish you a speedy recovery. do share your pictures of your progress
                        how much did it cost you for the surgery ? insurance , out of pockets expenses etc ?

thanks
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Age : 36

Congenital Penile Curvature. Ventral. 60-70 degrees.
Low Testosterone
Erectile Dysfunction
Low Libido

Medical History :
DVT and PE - Mar 2020
Primary Anti-phospholipid Syndrome - Aug 2020

GaussRifle

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Re: Congenital Curvature - The Whole Story
« Reply #29 on: July 12, 2021, 09:47:51 AM »

What is you T levels, last time I checked mine were 370 to 450.
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26 year old
45-50 degree downward curve with an indentation on one side when erect.
Using RestoreX and Xiaflex injections
Taking coq10 with daily Cialis 5mg.

thecrookedone

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Re: Congenital Curvature - The Whole Story
« Reply #30 on: July 12, 2021, 07:31:56 PM »

GaussRifle: kindly clear some space in your inbox. Will pm u
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Age : 36

Congenital Penile Curvature. Ventral. 60-70 degrees.
Low Testosterone
Erectile Dysfunction
Low Libido

Medical History :
DVT and PE - Mar 2020
Primary Anti-phospholipid Syndrome - Aug 2020

GaussRifle

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Re: Congenital Curvature - The Whole Story
« Reply #31 on: July 12, 2021, 08:56:33 PM »

Cleared
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26 year old
45-50 degree downward curve with an indentation on one side when erect.
Using RestoreX and Xiaflex injections
Taking coq10 with daily Cialis 5mg.

Mikel7

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Re: Congenital Curvature - The Whole Story
« Reply #32 on: July 13, 2021, 06:40:38 AM »

What is you T levels, last time I checked mine were 370 to 450.
Close to borderline low depending on the lab drawn on. You would feel better if it were in the 600-800 range. Sorry to jump in on this.
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Lump April 2020, age 60 , Dr Levine 6-26-20,
Dorsal Curve 11-1-20 , Peyronies
Vit E400mg, COQ10, ALCAR, Heat Therapy, Penimaster, Pentox, Cialis
had SNHL 7-31-20 - Stopped all Meds because ototoxicity  Heat/traction/VED are working.

mst1622

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Re: Congenital Curvature - The Whole Story
« Reply #33 on: July 21, 2021, 04:56:30 PM »

Hello dancingaileron,

Any update?
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dancingaileron

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Re: Congenital Curvature - The Whole Story
« Reply #34 on: July 23, 2021, 10:31:58 PM »

Hi guys - (Hey MST) - no major updates. The stitches are about 75% dissolved and the incision is healing nicely (i.e. it's less visible every day). I still haven't seen the "final result" but it looks very good from the partial erections I've experienced. As soon as the stitches are gone, I'm going to start applying silicone sheets.

There is no pain at all if I'm flaccid; there is some internal "aching" pain on the side where everything was corrected if I start getting erect - though this is also getting better day-by-day. I'm only 3 weeks out and my instructions are no sexual activity for 4 weeks (on paper) or 6 weeks (verbally).

I will update with any major changes. So far, I am happy I did this, and I think the main takeaway is that there are no negative side effects at this point (besides the expected healing aches). In other words, I'm still fully functional :D
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36 years old; USA; Congenital penile curvature (leftward 30 degrees, downward 20 degrees); diagnosed by Tom Lue; Surgery completed with Joel Gelman in July 2021

mst1622

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Re: Congenital Curvature - The Whole Story
« Reply #35 on: July 24, 2021, 07:24:06 AM »

That pain will be much less after 2-3 months. After 6 months you will probably forget about it.

Keep us updated  ;) :)
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lution3

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Re: Congenital Curvature - The Whole Story
« Reply #36 on: July 25, 2021, 04:27:18 AM »

Hi dancingaileron,

I am really glad that you share your story here and I wish you the best about your recovery. I also suffer from this...

- What is the cost of the operation and the extras (if there is)?
- How much penis will be shorten?
- Can you also share with us "What to expect" prior to surgery?
- Is your torsion & hinge effect corrected?
- When the scar at circumcision area healed, it would be possible to tell that you had an operation (will be extra scars?)
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Alex83

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Re: Congenital Curvature - The Whole Story
« Reply #37 on: August 25, 2021, 04:49:26 AM »

Hey dancingaileron, how's your recovery going?
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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 #38 on: September 25, 2021, 09:20:28 PM »

Sorry to keep everyone waiting for updates here. I'm 2.5 months out from the surgery and I'm basically totally healed. My erections are straight and the scar is becoming less visible every day. It was worth it and I'm glad I went to Dr. Gelman for this. For people asking me how much it cost, it was covered by my insurance so I didn't pay more than my maximum out-of-pocket per my PPO health insurance. I don't know how much it would be if you don't have health insurance or are coming from outside the USA.

I was a little concerned that the scar would be really obvious because it was red and "hard" and stood out from the surrounding area, but it is blending in more and more and even invisible on the right side. I'm using silicone gel on it most days and I think that is making it disappear pretty quickly.

Like I wrote before, Dr. Gelman put two sutures on the right side, one a little higher. The lateral curvature is 100% corrected, I still bend down a little bit but much less than before. I think he was conservative here since this wasn't a cosmetic procedure. The improvement, even with residual downward curvature (which was expected) is great.

For shortening, my penis is now totally straight side-to-side so my length was reduced to the same measurement of the shorter side. I think this is what every one should expect.
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36 years old; USA; Congenital penile curvature (leftward 30 degrees, downward 20 degrees); diagnosed by Tom Lue; Surgery completed with Joel Gelman in July 2021

mst1622

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Re: Congenital Curvature - The Whole Story
« Reply #39 on: September 26, 2021, 11:55:41 AM »

That downward curvature could dissapear with the time. You are still healing and your final result will be on 6 months. Also 5-10 degrees of residual curvature are completely normal and could be treat with traction.

I do not know why Gelman does not recommend traction devices. There are a lot of scientic articles proven significant benefits from traction but Gelman rehabilation program is none. Just wait and see.

I have asked Dr Landon Trost about it too and you can see his reply on this forum.

https://www.peyroniesforum.net/index.php/topic,16530.msg145363.html#msg145363

So Dr Levine, Dr Yafi (he works in UCI with Gelman) , their fellow from Germany Dr Georgios Hatzichristodoulou, Dr Trost all recommending traction rehabilitation n 3-6 weeks post op (both plication and grafting) but Gelman does not advice rehabilitation program post surgery.

The question is: why the Doctors who did many research on traction devices recommends it but the Doctor who does not write any (even one) scientic article about traction does not? For example Levine seems to be the most experienced in Peyronies and since 10+ years he recommends traction device for EVERY surgical patient.

Just read the interview with him on mypeyroniesinterview or something like that.

Quote
Dr Levine says "External penile traction therapy is initiated 3–4 weeks postoperatively averaging greater than or equal to 3 hours daily for 3 months. The use of external penile traction devices has been encouraged to reduce postoperative penile shortening and to guide straight healing of the penis "


I use PMP after Gelman surgery and it really helps. The skin looks much better, erections are stronger and penis looks very healthy.

Just Google Levine, Hatzichristodoulou or Yafi articles. They are recommending traction about 3-6 weeks post op. Are they wrong?

Stretching the scar tissue for prolonged period of time has a great sense for me. You do not want to contraction of the penis due to the surgical scars.

I also did not find any of article saying that traction is dangerous.

Gelman is just great surgeon. All he does is surgeries. No rehabilitation program except waiting and do nothing.
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mst1622

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Re: Congenital Curvature - The Whole Story
« Reply #40 on: September 26, 2021, 12:36:00 PM »

"Therefore, it does appear that traction postoperatively enhances penile healing in a “straight direction” and can prevent length loss, but more importantly, may also result in some recovery of lost length

The goal of TT after surgery is to not only encourage straight healing but to prevent further length loss and possibly recover lost length as compared with preoperative length. This study indicates that in men undergoing corrective surgery for Peyronies Disease with either TAP or PEG benefit from postoperative TT with respect to preservation of penile length and may even gain some length that was lost as a result of the scarring process associated with Peyronies Disease.

  Compliance and adherence to the traction protocol remains the most difficult factor, but it is necessary to achieve the desired results, as was suggested in the study by Moncada et al. [6].

TT has been shown to induce histologic changes within the collagen fibers where the disordered collagen fibers demonstrated realignment of the collagen parallel to the traction forces.   Other studies using the Dupuytren’s model with traction have demonstrated an increase in metalloproteinases, which are known to be involved in scar remodeling [26]. These cellular and extracellular changes appear to induce scar remodeling which likely results in change in penile length and deformity seen when traction is applied to the penis of men with Peyronies Disease.

   Lastly patients did not use the TT in a consistent fashion, with respect to daily application or duration of postoperative use, which may compromise outcomes.

  It appears that postoperative TT can, at a minimum, result in perceived and measured SPL preservation. The traction protocol was safe and well tolerated, as there were no local complications and no change in penile sensation. The protocol is tedious and requires compliance to be effective. Men who used TT (TT+) after corrective surgery for Peyronies Disease experienced statistically significant gain in measured SPL (P < 0.001); in addition, none of the men who used traction had a perceived penile length loss in both the TAP and PEG groups. In this population, there was a high level of satisfaction with correction of curvature after surgery (94%)

Postoperative management
The postoperative rehabilitation period is critical to reduce the risk of postoperative Erectile Dysfunction and length loss as well as optimize straight healing. Typically a patient is seen 2 weeks after surgery, at which point, massage and stretch therapy is initiated.72,73 The patient is instructed to grasp the penis by the glans and gently stretch it and then with his other hand massage the shaft of the penis for 5 min twice per day for 2–4 weeks. The massage and stretch can be performed by the patient’s  partner for the second 2 weeks if possible. This will reinitiate the sexual experience for the couple and hopefully diminish the fear of reinjuring the penis, for which the partner may feel responsible.

Finally, external penile traction devices have been encouraged and have been recently shown to reduce length loss postoperatively and can even enhance the likelihood of further length gain with both grafting and plication procedures.

Postoperative Rehabilitation
All TAP and PEG patients were encouraged to perform massage and stretch exercises starting 2 weeks postoperatively, to be continued for 4 weeks. These patients were also recommended to perform traction therapy, beginning 3–4 weeks postoperatively. They were instructed to wear the device 3 hours/day or longer, and no more than 2 hours/session, for a total of 3 months "
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john.doe.550

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Re: Congenital Curvature - The Whole Story
« Reply #41 on: October 08, 2021, 12:55:01 AM »

dancing, huge thank you for sharing details and notes about your surgery with Dr. Gelman.  The doctor's procedure summary is truly interesting to read. Oh, so very pleased for your positive results!
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Age: 62;  Peyronies Disease diagnoses: MAR 2019;  Onset: Immediate & severe;  Treatment: Xiaflex, APR 2019 to present, slow & steady improvement. Notable Xiaflex improvement through early 2021. Potentially good enough for late 2021 plication surgery.

dancingaileron

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Re: Congenital Curvature - The Whole Story
« Reply #42 on: Today at 05:04:02 PM »

No major updates / changes:

scar continues to blend in with the rest of the skin. Everything else is the same as my last post. No sexual side effects. Again, for anyone concerned about loss of length, my advice is to expect your final result to be the same length as your shorter side. If you have more complex multiple curvatures, then it might be more.

People are also asking that I post before/afters. I may do this when comfortable. I haven't decided yet. I'll post again in a few months or if anything arises.

tl;dr - surgery was successful and the results were what I expected / hoped for.
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36 years old; USA; Congenital penile curvature (leftward 30 degrees, downward 20 degrees); diagnosed by Tom Lue; Surgery completed with Joel Gelman in July 2021
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