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Interested in hearing from parents that have been through a hypospadias surgery

post #1 of 23
Thread Starter 

I dont know if this is the right place to post this, but I would love to hear from parents that have been through a hypospadias surgery with their little guy and how it went, good or bad. I know we are hearing the good stuff from the urologist, but it would be nice to hear "It was horrible, healing was so slow" or "it went great and healing was easy.", etc. Either way, I just want a perspective that I dont have right now. I would appreciate no speculation on whether it is necessary or not, it is something we have concluded that is necessary and I have dealt a great deal with depression surrounding the cause and prevention and dont need to further beat myself up I have been doing it for 11 months already. bawling.gif Surgery is scheduled for the end of March. Thanks in advance!

post #2 of 23

I knew a woman whose son had surgery to repair hypospadias, but we weren't really close and she was pretty reserved in talking about it.  The part (for her I guess) that was the hardest about the healing time after was that her son was quite a wild child toddler and he was feeling perfectly fine very soon after the surgery- and she had to try to really monitor his activities so that he didn't jump/bump/smash do something to the delicate surgical work that was healing.  She mentioned something about a small plastic tube (for forming the urethra) that had to remain in place while healing- and I think she said that the tube stuck out about 1/2 inch past the end of his penis- so it was that thing she was most worried about catching.

post #3 of 23

I found this thread on another board...

 

http://www.thewholenetwork.org/discussion-boards.html

post #4 of 23

i was a live-in nanny for a boy who had hypospadias surgery.

the hospital recovery was the hardest for him, but this was in switzerland, and things are rather old fashioned there. they kept him restrained to the bed for 2-3 days after the surgery.

after he came home, he was just fine. we had to be careful for about a week around his genital area, but he didn't seem to have any pain, and there weren't any complications.

he seemed to like the effect of the surgery, being able to pee out like his brother instead of down out the bottom of his penis.

cosmetically, it looked like an average circumcised penis after the surgery. no noticeable scarring.

 

hypospadias is a condition that can vary significantly child to child, and the surgery changes along with that.

 

C had hooded foreskin, and the urethral meatus (where pee comes out) was on the bottom side of the glans (head) of the penis. this is concidered to be moderate.

mild is usually not operated on, and severe is usually a bigger ordeal.

hope your son goes well through the surgery, and it is as problem-free as C's was

post #5 of 23

I've never known a family member with hypospadias.

 

I would just strongly urge you to ONLY do something irreversible if the boy is in immediate jeopardized health.  It can't be an emergency if it has waited this long and is yet scheduled far in the future. 

 

The longer the normalization is postponed the better the result will be, due to advancements in medicine including stem cell and regenerative therapies, and also due to the ability to reflect the boy's rational informed wishes about what would constitute an improvement. 

 

The guiding principle should be "which course of action closes the fewest future doors" for the patient who is not yet competent to make a rational informed choice. 

 

I say cancel the surgery. 

post #6 of 23

DS(4) had hypospadias(his urethra was to the bottom and right to where it should have been) pretty bad, along, with chordee(he was very curved), and dorsal hood(malformation of the foreskin, he only had foreskin on the top). We had the surgery done at 6mo, mainly because we were getting out of the military and wanted the same Ped. Urologist we had been seeing to perform the surgery, but also because we were told it's less traumatic when it's done at a younger age(for the child that is, not the mom!). In our DS case the Ped. Urologist absolutely wanted it done BEFORE he went to school, she knew DS didn't have a chance of going pee standing up without getting his pants soaked and wanted us to spare him the humiliation. The surgery itself wasn't all that bad, except for the worrying on my part, and the fact that DS couldn't eat for a few hours before and had some minor complications and had to stay longer in the hospital and thus couldn't eat for longer. We were only at the hospital for the day, DS was uncomfortable when he got home but got over it quickly, he decided to start army crawling the next day which made me nervous as all heck!! No problems at all during recovery, and has been fine since. 

post #7 of 23

 


My son was born with bladder exstrophy. As well as his bladder being inside out on his abdomen, he also had pelvic surgery and penile surgery. It was called something like an esospadiea. I know I have the name wrong, but we went through a decision process that wasn't exactly easy. We concluded that his body wasn't constructed after the healthy, whole male human blueprint that so many take for granted and we needed to fix that.

I regret so much letting the pediatric urologist do the surgery. His surgery was at 2 weeks.
I didn't research it, study it, or even sleep on it. I was pretty caught up in post partum at the time. But it could have waited. It could have waited until I found someone more knowledgable. I don't think the surgeon even knew that the foreskin had a skin side and a mucus membrane side. I kept asking her questions about it and she kept telling me that I was missing the mark with it, that we'd had a disconnect over it. (my son is 11 months old too btw)

The recovery from the first surgery was ok. He was tiny and in traction so I can't comment on recovery with a one year old.

However, if you don't mind a reccommendation, find a surgeon who is foreskin knowledgable as well as one who sees the value in it. If you do that you can be confident that he is doing the surgery with a whole understanding of male anatomy and it's value.

I never had that piece of mind. So I fired her and am now looking for a new surgeon that I know has ethics and integrity. Though that phone call sucked.

It is hard because we say to let him make his own decision about cosmetic surgical procedures and then medical choices about non-emergent surgical procedures.

Sometimes Dr.'s don't always give the whole view. Just theirs. I like the idea about waiting for better medical procedures and technology for my family. Not to mention, when their genitals are bigger it is easier to do the work on them. Plus, down the road more mainstream medicine will be aware of the value of the foreskin.
post #8 of 23
Its also worth saying, there is a type of hypospadias repair that spares and repairs the foreskin, rather than using it in the repair and circumcising the boy. It is not very common in the USA, but maybe more so overseas? You might ask about that or look for a surgeon who can do it.
post #9 of 23
Quote:
Originally Posted by Oubliette8 View Post

Its also worth saying, there is a type of hypospadias repair that spares and repairs the foreskin, rather than using it in the repair and circumcising the boy. It is not very common in the USA, but maybe more so overseas? You might ask about that or look for a surgeon who can do it.


Our Ped. Urologist mentioned this, but she wasn't confident about doing it and said it could cause more complications, and the last thing we wanted was future surgery for DS so we declined. I regret not finding him a doctor that was confident in doing the foreskin restoration.

post #10 of 23
Thread Starter 

Thank you for all your responses. We have been told that because of degree (moderate to beyond) that they will use the foreskin to patch the underside of his penis shaft. His foreskin is also only on the top, it is not complete. I would almost be more concerned to repair the hypospadias and repair the foreskin as well? I dont know, you all have given me more to research. Thanks again

 

Quote:
 We concluded that his body wasn't constructed after the healthy, whole male human blueprint that so many take for granted and we needed to fix that.
 

Although AnnieNimltys story is a great deal more extreme than ours, this is the sentence that resonates with us and our situation. We have an amazing ped urologist and have heard many reccommendations for him from many peds in our area. I am confident with his abilities and he has listened to us and our concerns as well with what seems to be compassion and open ears. Still doesnt make the nearing surgery any less daunting.

post #11 of 23

Quote:

Originally Posted by Mittsy View Post

the Ped. Urologist absolutely wanted it done BEFORE he went to school, she knew DS didn't have a chance of going pee standing up without getting his pants soaked and wanted us to spare him the humiliation.


This I feel is the absolute last thing we should be worrying about. 

 

I'm a healthy normal (foreskin-free) adult male and I pee sitting down.  It's cleaner. 

 

There are flushable paper funnels women can use to pee standing up.  Use those on the exceedingly rare occasion when sitting is not a workable option. 

 

Seriously, go to an online forum like BodiesLikeOurs and ask how many adults are glad their normalization was done before they could weigh in.  Something close to zero point zero I assure you.   

post #12 of 23


 

Quote:
Originally Posted by Ron_Low View Post

Quote:

Originally Posted by Mittsy View Post

the Ped. Urologist absolutely wanted it done BEFORE he went to school, she knew DS didn't have a chance of going pee standing up without getting his pants soaked and wanted us to spare him the humiliation.


This I feel is the absolute last thing we should be worrying about. 

 

I'm a healthy normal (foreskin-free) adult male and I pee sitting down.  It's cleaner. 

 

There are flushable paper funnels women can use to pee standing up.  Use those on the exceedingly rare occasion when sitting is not a workable option. 

 

Seriously, go to an online forum like BodiesLikeOurs and ask how many adults are glad their normalization was done before they could weigh in.  Something close to zero point zero I assure you.   


Thanks for adding to the guilt, really needed that(please take note of sarcasm)!  We made what we felt was the best decision we could for our son at the time, yes we should probably have waited, but at the time we fully trusted the Ped. Urologist, and we did not want the experience to be a traumatic one for DS. Seriously, you try having a son with hypospadias, being told minutes after you have him that something is wrong with him, have doctors and nurses treat him like a medical anomaly and scare the shit out of you with possibilities, then be told your child will at some point have to go through corrective surgery BEFORE you judge our decision making skills. We were scared out of our  minds, I felt incredibly guilty for possibly doing something that would make my child have this problem, I probably had PPD(I was asked by many people, but was in severe denial), and we made what we thought was the best decision for our baby.

post #13 of 23
Quote:
Originally Posted by Mittsy View Post

 


Thanks for adding to the guilt, really needed that(please take note of sarcasm)!  We made what we felt was the best decision we could for our son at the time, yes we should probably have waited, but at the time we fully trusted the Ped. Urologist, and we did not want the experience to be a traumatic one for DS. Seriously, you try having a son with hypospadias, being told minutes after you have him that something is wrong with him, have doctors and nurses treat him like a medical anomaly and scare the shit out of you with possibilities, then be told your child will at some point have to go through corrective surgery BEFORE you judge our decision making skills. We were scared out of our  minds, I felt incredibly guilty for possibly doing something that would make my child have this problem, I probably had PPD(I was asked by many people, but was in severe denial), and we made what we thought was the best decision for our baby.



hug2.gif I have no advice, but this sounds like a difficult situation.  Don't feel guilty, you did the best you could in a scary situation.

post #14 of 23
Quote:
Originally Posted by Mittsy View Post


 


Thanks for adding to the guilt, really needed that(please take note of sarcasm)!  We made what we felt was the best decision we could for our son at the time, yes we should probably have waited, but at the time we fully trusted the Ped. Urologist, and we did not want the experience to be a traumatic one for DS. Seriously, you try having a son with hypospadias, being told minutes after you have him that something is wrong with him, have doctors and nurses treat him like a medical anomaly and scare the shit out of you with possibilities, then be told your child will at some point have to go through corrective surgery BEFORE you judge our decision making skills. We were scared out of our  minds, I felt incredibly guilty for possibly doing something that would make my child have this problem, I probably had PPD(I was asked by many people, but was in severe denial), and we made what we thought was the best decision for our baby.



 




Oh, I probably shouldn't say it, but I know exactly how you feel. I have had so many of those same feelings. They are there even if you intellectually know different.

You have this sucked under and overwhelming feeling right after birth and, I can see now more than ever how much people rely on the expertise of someone who knows more. And that is all you are thinking. That they are telling you the best way, and the whole story... Even when you know intellectually not to trust a first opinion or just one Dr.

Just because they are a Dr. doesn't mean they are honest, or virtuous, honorable or ethical. But they are confident and speak so knowingly that it is a relief to be around someone who knows better.

We have a long road ahead of us as a society on this matter.
post #15 of 23

Hi,

^^ we fully trusted the Ped. Urologist ^^

 

I'd never cast judgement.  I'm sorry my present advise looked like an attack on your past actions.  I was trying to focus on the apparent insistence of the doctor, and the apparent paucity of other options considered by the doctor.   

 

Let's just be aware that doctors like to fix things.  It's not strictly greed; imagine if you'd had all that training and a case presents itself where it might be applied. 

 

But fixing things now is not always the best option.  If there's destructiveness / irreversibility involved the ideal would be for the patient to decide, because only the patient knows the real value of the parts to be destroyed or irreversibly changed. 

post #16 of 23

OP.  My nephew went through surgery to repair his.  He is now 17 but had the repair done abut 2 1/2.  When he was born the ped told my sister that it was cosmetic and he may need it fixed in the future so they left it alone.  He had foreskin on the top 1/3 ish of his penis.  As he got older  ( and my sister went to nursing school) she noticed he had more issues.  He had chordee which when he got an erection pulled the glands downward like to a 45degree angle.  She took him to a ped uriologist at Hershey Medical center and they elected to have it repaired at that time.  He was going to need it fixed sometime before he hit puberty the doctor cautioned them that w/ the hypospadis and the chordee it could start to become painful when he got an erection.    He was already potty trained at the time and it was very emotionally traumatic for him more so painfully.  He had a stint in which cause him to dribble pee and he as very up set he had to go back to pull ups and he was made they put zippers on his penis.  I think it was only a few days at naps and  nights they used prescription  pain killers then went to ibuprophen.   They did use the foreskin to graft the opening but his was not complete from birth.  He does not remember the surgery or he says he vaguely remembers something.  From her going through it with her son she recommends if the child need it repaired to do it before they are potty trained.  It was several months he was fretfully worried about dribbling pee.

Hope your son does well with what ever you decide

post #17 of 23
Quote:
Originally Posted by Ron_Low View Post

Let's just be aware that doctors like to fix things.  It's not strictly greed; imagine if you'd had all that training and a case presents itself where it might be applied. 

 

But fixing things now is not always the best option.  If there's destructiveness / irreversibility involved the ideal would be for the patient to decide, because only the patient knows the real value of the parts to be destroyed or irreversibly changed. 

 

http://www.bbc.co.uk/news/health-12666171 

 

This article explains that Dr. Atala has succeed at treating injured Mexican youths by culturing their own cells to grow a transplantable urethral tube.  No anti-rejection
drugs are needed. 

 

This concept makes the case for leaving hypospadias cases intact until they can both weigh in on the their own treatment and also benefit from these evolving therapies. 

 

Cheers,
-Ron


Edited by Ron_Low - 3/10/11 at 12:18pm
post #18 of 23
No advice but some big hugs - I'm so sorry that you are feeling attacked here. It is obvious that you have carefully weighed your options regarding your son's condition and are doing what is best for him. I hope that he has a quick recovery.
post #19 of 23

i'm in 2nd week with my almost 11 month old son.i wish we had done more research before surgery. i did research on the doc and medical center and the surgery itself but not the complications and long term problems.my son is still in a lot of pain they said surgery went well tube came out on day 3 but we r still doing 3 baths a day his eating sleeping routine  is all messed up. i just called doctor because he has been screaming all day and last bath it look as though the head was coming off it was bright red and bleeding they said this was normal but it does not look normal i'm getting 2nd opion tomorrow. i would love to know how yours turned out because i can not find much info thanks kim     

post #20 of 23

My cousin, who is 31 years old, has a hypospadias, and so does my almost 5 y/o son.  My son was premature, spend time in the NICU, and had to see a slew of specialists.  We met with the pediatric urologist.  My son has a mild hypospadias with the meatus just a few millimeters below the tip, and a hooded, non-complete foreskin.  The Ped. urologist still said he needed a repair.  I asked about foreskin reconstruction, and he said that all the parents he had done that for, had come back and had their sons circumcised.  I read a lot of horror stories about the surgery, and being a nurse and seeing all of the complications from other "minor" surgeries, I was terrified.

 

I found a hypospadias support group on Yahoo! Groups, and many of the men who dealt with hypospadias recommended waiting until the child could decide.  I spoke with my cousin, and he recommended waiting.  His parents waited, and let him decide, and he is very happy with his penis.  He has never experienced any ridicule. 

 

My son is now almost 5.  He still sits down to pee, but can stand (he's just more comfortable sitting).  He pees straight etc.  It's a hard choice, but there are support groups out there. 

 

Tellie

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