Can anyone help me find a skilled surgeon for Congenital Curvature? (East Coast)

[James Bond]

Hello. I'm new here, this is my first post and I was actually surprised to find a forum for my exact problem so I'm hoping someone on here can finally help me. To get straight to the point, I'm looking for a skilled surgeon in the East Coast area who will perform surgery on my congenital curvature, I currently live in Connecticut but I'm willing to drive out of state to see a surgeon who has experience with this condition. I've looked all over the web and can't find any urology clinics in my area who even seem fully aware of peyronies or congenital curvature which I find odd. Also I've found zero reviews or anything suggesting a specialty for this condition, even outstate, it seems almost impossible to find a skilled surgeon (I'd rather not just wing it and go to any random urologist who hasn't had much experience with this type of surgery). How did you guys find a good Dr. without knowing anyone? Does anyone know of any good Dr's on the east coast new england area? Btw any help is much appreciated

Some background:

I'm 22. I was born with Congenital Curvature that seemed to slowly get worse as I matured. It curves left pretty bad from the way its attached to my body preventing it from bending to the right. If I let it go it somehow sits basically 90 degrees left (hard to explain but u get the picture). It's definitely not peyronie's because I have no plaque or ED and It hasn't gotten any worse in the past 3-4 years or much since I was born. This is causing severe psychological problems in my life at this point, I consider myself a pretty good looking guy but this has slowly ruined me. I used to be very social, many gf's when I was younger but I haven't had an actual gf in 3 1/2 years now because of my curvature. All my previous gf's that I've had serious relationships with eventually left me and told all of my friends about my "messed up penis" haha its great...I said before I don't have ED biologically but mentally it is a problem now. Many of the girls I've been with in the past 3 years of my college never stuck around and many even asked me, "whats wrong with your penis?"..just a little embarrassing/awkward? (I get they are shallow but unfortunately thats how american society works). So my college years have basically sucked because of this, no matter how optimistic I tried to be, its now causing depression, loss of confidence, anxiety, and even acne now related to the other side effects..which is not what I need.

[Skjaldborg]

>I get they are shallow but unfortunately thats how american society works

Not in my social circle in doesn't; I'm afraid you were dating awful, awful people. Normal people do not disparage their significant other's genitalia. I recommend you start dating more intelligent and thoughtful women. Doing so would probably help you more than surgery.

As for corrective surgery, I know about a very good surgeon on the west coast, Dr. Tom Lue, who perform surgeries for congenital curvature. Most surgeries for curvature correction involve putting stitches in the opposite side of the curvature direction to straighten the penis. This will result in shortening of the penis to some extent. Be ready for that. I am sorry you are dealing with this problem and hope you achieve a positive result.

Best,

Skjald

[jackp]

James

There is no reason to live your life that way. There is hope and help but you will have to travel to get it. Worth the time and trouble, a million times yes. There are no skilled surgeons I know of in your area.  

The closest would be Dr. Douglas Milam at Vanderbilt in Nashville TN.  He does all kinds of corrective penile surgery.  His web site is www.milamurology.com  It would be worth your time and travel to make an appointment for a consultation. If you want send me an email and I will put you in contact with his PA, Todd Doran.  

Read the story "Mending Broken Hearts" on the surgery board or on my blog. It will give you an idea of what he can do.

Good Luck, you will find the right girl and be just fine.  

Jackp
http://jackp-penileimplant.blogspot.com
jwp104@att.net (email)  

[lordfkiller]

Tom Lue at UCSF is a world renowned expert in congenital penile curvature and Peyronie's disease. He uses his own technique, 16-dot plication, which has also been adopted by many urologists around the world. Where shortening of the penis is not affordable (this is possible with all plication procedures), he uses another technique called Lue's procedure, which is again invented by him. But that's only for Peyronie's as far as I know.

There is also good news for you.
First of all, most patients with a congenital curvature have penis lengths that are above average, so they are usually treated with plication procedures (shortening the longer side). That is good because procedures that add to the shorter side of the penis are much riskier.
Second, unlike the majority of congenital curvatures that are ventral (down), you have a lateral (left/right) curvature. That means the surgeon will not have to deal with the neurovascular bundles that are on top. Damage to those nerves as a result of elevating them to operate on the dorsal (top) aspect of the penis is the biggest risk that most people have to take when undergoing similar surgeries. So in that sense, you should consider yourself very lucky.

Now as someone who has gone through this, my suggestion is that you do your best to have this done by an expert like Tom Lue or Laurence Levine (there's a handful of them in the US, none in many other countries - again you're lucky to be in the US). If you decide to go with Lue, I suggest that you contact him. If, after he gives you a quotation, you find that you can't afford to go to San Francisco and have it done by him, see if he recommends someone closer to you. You can also try emailing him perhaps with some photos attached. I'm not sure if that would be appropriate, but he is a very nice person.

Tom Lue, MD | UCSF Department of Urology
Tom Lue | UCSF Medical Center

Good luck

[notanymore]

dont bother looking for someone in your "area". if you are going to spend the money on the surgery and even if your insurance covers it, he extra $1000 for a hotel and flight is worth the expense to go to someone who specializes in these procedures. id recommend a younger doctor who has seen some of the more recent techniques. these guys on the forum here really know there stuff.  

[lordfkiller]

I agree with notanymore in that you shouldn't just do it with anyone to avoid spending more. To my knowledge, the average urologist gets to see almost no such procedure being done by an expert during their residency. That's because professionals in this area are so scarce. If you go through the posts on these forums, you can find lots of people who have gotten into real trouble because of undergoing this kind of surgery with an ordinary urologist. Complications include complete or partial recurrence, post-operative erectile dysfunction, temporary loss of sense or even permanent numbness of the glans due to damage to the nerves. These can of course happen with any surgeon, but are much more likely with someone who does not have sufficient experience in this area.

As for the age, I think anything between 50 - 60 is good. I would be cautious about a surgeon who is in his/her early 40s or late 60s.

[James Bond]

Hi all. Sorry for the late response, I just finished a busy semester. Thank you for your posts, they were all very reassuring and helpful . And I do realize my particular situation could me much worse than it is, I am thankful I have possible solutions available to me. I will definitely check out Dr. Tom Lou and Dr. Douglas outstate..although this is something slightly awkward to contact someone about (at least I've never contacted another person about my private condition).. How and what should I say when I contact them?? I'd also like to add that I measured my penile CC angle properly measuring at 30 degrees left. Its worse than I thought! Also if anyone on here knows, how much does a Congenital curvature straightening surgery usually cost? Would it be covered by aetna insurance or is it cosmetic? Hypothetically, if I contact and plan to visit dr. Tom Lou in California from Connecticut, how and what will I tell my father that i'm leaving to Cali to get my penis surgically corrected? (My father is an eye surgeon himself, but he knows nothing of the penis or that these conditions even exist and I haven't spoken to him once about my condition because I feel its too personal and embarrassing to confront..I also don't know how he'd react. It would simply be VERY awkward.) I understand these issues may sound slightly immature for a 22 year old, although, unfortunately I have no experience in confronting issues like this...Thank you all again

[james1947]

James Bond

California is really far from Connecticut.
Check out some other options much closer to you, like doctor Levine, not less an expert.
Check out also:
https://www.peyroniesforum.net/index.php/topic,4063.0.html

James

[LWillisjr]

I'm guessing your dad might already suspect this. I assume he changed your diaper a time or two and often infants have or get an erection when the diaper comes off. As you say this is congenital then you've had this since birth.

[TheTreee]

Hey, I fell ya, bro. I'm 43, and have a congenital curve to the left of approximately 35 degrees. It can be a real nightmare psychologically.

As far as surgery, I'm actually seriously considering the PSP Penoscrotal Plication procedure that Dr. Morey does at UT Southwestern in Dallas. Norm recently underwent this procedure where they use plication sutures, but don't deglove the penis and don't mobilize the neurovascular bundle for surgery. They basically make a 2cm cut at the base of your penis, then add the sutures through that cut. It's less invasive and traumatic than normal plication or a Nesbit procedure.

Someone commented that your dad must know if your curve, but I disagree with that. Neither of my parents has ever said anything about my having one, and I'm convinced they have no idea. It can be a real burden to bear alone.

As far as insurance, in a lot of cases if you get a referral from your primary care physician to a specialist, and your curve makes intercourse difficult (tell them it does), insurance should cover it. If yours doesn't, change insurance providers.

Also, like everyone said, if you're seriously considering doing this, do it right. Go to one of the top doctors in the country. Your penis is too valuable to go to someone who isn't very experienced in these procedures.

If you feel comfortable enough, talk to your family out dad about it. But if they blow you off and tell you it's not that bad or you don't need to do this, and you feel like you do need to do it, do it. They don't know what it's like. It can be a nightmare at times. You have to do what's best for you, and if you're going to do it, do it sooner rather than later. I wish I'd had the knowledge to get my curve fixed 30 years ago.

That being said, meeting the right girl can help a lot. I've been married 15 years and have 2 kids. My wife doesn't mind my curve at all.

(The only reason I'm considering surgery now is that I think I may have found a procedure that is relatively safer than traditional methods. Despite the fact that my wife doesn't mind my curve, after all these years, I still do.)