Mum of son with chordee - need to make decision on plication surgery - help!

[cmmm]

My son was diagnosed with chordee and hooded foreskin at birth and was advised he would need surgery to straighten it.  He likely has very mild hypopasdias but only in that opening is slightly more on underside but no mention of that has been made again. He was our first child, wasn't really told much about it and I live in Uk so it's all a case of automatic referrals on the nhs so you just kind of go with the flow I guess assuming that they know best!

Son had surgery at 2.5yrs where they degloved him and circumcised him hoping any tethered skin on the underside would release the chordee.  They noted he has a 'torque' to the left that cannot be fixed.

Post surgery he's doing fine but still has a bend so he is now 4.5 and they want to do more surgery with plication. I've read so many things but honestly don't know what to do for the best and would really appreciate any advice from someone who's had/ has it (either chordee or surgery) do wish it had been corrected in childhood, do you think it would make a difference?  How adversely affected has it been in adulthood in relationships, if at all? without surgery?

My fear is getting it done and he just needs more and more ops making it worse and ruining his childhood and making him self conscious so early on in life when he is not remotely at all.

At this moment in time he can pee standing up but has it ensure he has it at the right angle to account for the bend and pull to the left so he just quite often sits as it's quicker and easier.  I do notice sometimes he can go to the toilet often, maybe like he cannot fully empty his bladder in one visit - maybe due to Urethra and where opening is? Thought other than the inconvenience if we're out and about it doesn't bother him. .... but obviously our concern is later in life - will it get worse or once puberty hits will it stretch out further?

So sorry for rambling but it's a massive decision to make on behalf of our son and want to ensure it's the right one! So honestly any advice at all would be hugely helpful!

[Stabler]

Hello Cmmm

We are very glad you have found the forum and hope we can help. I'd like to ask first how old your son is? Next was the curve severe enough that surgery was something he had to have done could he have not had the surgery. I'm asking because you mention concern for when he hits puberty which makes me think he is very young to have undergone surgery.

There are members here that will be able to answer questions a loot surgery, please keep in mind this is a forum for Peyronie's disease so we may have a lot of questions for you so that we can help where we can.

Stabler

[cmmm]

Thank you for your reply. I know I realise it's for peyronies but honestly spent months reading things and this is the only remotely relatable forum I can find.

He is now 4 and half years old. He was routine assessed in the hospital before being discharged when I had him and his penis was quite curled and to the left so we were referred to a paediatric urologist from when he was 3 days old.  He was seen when he was about a year and then again six months later after I was given steroid cream to apply to him to allow the foreskin to be pulled back at our next visit to determine hypospadias, which is mild and diesnt need correcting.

Urologist was instantly Suggesting surgery, saying the foreskin was very tethered on the underside and she hoped releasing it would straighten it out as apparently is the case for most people.  However the surgery has been done when 2 and half hrs  and they had to completely remove the foreskin but he still has a bend downwards and he is to the left which doesn't really matter I guess.

When he was still in nappies and after I would change him from a sleep he would sometimes be erect so I could see that there is a curve when erect too, however now he's older and more self sufficient I don't really see like that anymore and rare occasions I have I don't want to make an issue of it by trying to inspect it! But again can still see it's curved.  

The urologist now suggested a second op involving plication so shortening the top side to match the  length of the underside. She can't even properly assess the degree of bend until on operating table and he's degloved with saline solution added.

In the uk it is the common course of practice to correct chordee with the operation as we don't really do private healthcare etc. It is like a standard service that has been medically approved so whilst we can of course refuse the operation (at the moment we've request to come back to the clinic in a year and reassess then) you normally just trust with what the health professionals are telling you as they're not getting any additional money for it or anything it's just part of their job.... I would say and they're signed to and audited by medical professional board etc.

But having read some bad stories - a lot relating to hypopsadias to be honest, as it's hard to find something just on chordee - I'm just so worried he will end up needing more ops and be so annoyed and upset with us later in life for doing this to him.

Urologist says we can continue to keep waiting as op can be done anytime obviously just the older he gets the more aware of it he will be and remember it more if we do it when he's 10 or something after deciding it's getting worse, as I guess we kind of hope that he's grows more it will just straight more and be maybe mild bend at the end which might not bother him too much at all??  But obviously as a lot of people have had the op in later life seems this might not be he case in which is why I wonder if some people would've wanted it done as a child?

Concerned also that scar tissue from op he has already had will contribute to the curve

[jan.schaller1958]

Hi, I think that your question hasn't anything to do with Peyroines and needs to be addressed by a pediatric urologist. There are some online sites where you can pay a small fee for a question like this with a board certified pediatrician/urologist. Trying looking for those for your best answers.

Good luck and best wishes to you and your son.

[Verhaegen]

Hello cmmm,

Isn't it possible that traction would help with fixing his curvature? It certainly is helping fixing mine, which comes from Peyronie's.
If I were in the same situation as your son, I would rather not have any further surgery done. When he becomes a teenager, he can try other treatments like traction. At his age, there is really no reason to hurry. Better be careful instead of opting right away for a drastic solution he hasn't opted for and might have to deal with its negative consequences later.
Welcome to the forum!

[chetalg]

Hello cmmm

You need to carefully research Paediatric Urologists who are specialised in this area and if necessary seek a number of opinions.
Ask your GP to write a letter of referral to the consultant of your choice. Quite often it is easier to approach the consultant directly and pay a private fee. You can always contact the Urologist's secretary/hospital to find out their exact procedure for a patient wishing to book an appointment.
Like any other profession or trade, different doctors have varying levels of ability and areas of expertise. Some are just simply better than others. Experience is a factor too.

Best regards