hyperspadia penis "looks" circumsised" - Mothering Forums

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#1 of 30 Old 09-15-2006, 12:32 PM - Thread Starter
 
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I just had a baby with Hyperspadia ( I think thats what it is called) two weeks ago. I know nothing about it. its looks circumsised but I know its not!. We are going to see a urologist and I need to go in prepared incase they say I must circumsise him. I have been told he will need surgery within the year to lengthen the urithra. (sorry about all the spelling errors. brain hasn;t returned from labour yet) Has anyone gone through this with thier son? Does anyone have any good links on where to begin researching this? is circum. usually reccomeded? so many questions and little free time for research. Thanks in advance from anyone that takes the time to share with me.
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#2 of 30 Old 09-15-2006, 02:06 PM
 
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Hi Carla,

Congratulations on your little man!

My son has hypospadias. In his case, the meatus (urethra opening) is at the base of his penis, where it meets the scrotum. He also has the hooded foreskin (dorsal hood) that it sounds like your son has. Does his foreskin look like it's all "bunched up" on the top of his penis, with none underneath and the glans showing? If so, that's the dorsal hood.

My son's hypo is quite severe (third degree) and he also has chordee (abnormal curvature). As a result, he needs two surgeries to correct it. He had the first surgery in May of this year, when he was 13 months old, to correct the chordee. The second surgery will be in November and will repair the hypo. They will be using the foreskin to rebuild the urethra, and as a result he will look circumcised, although I will NEVER consider him circ'ed. As well, there is a chance he might need skin grafts (bucchol graft -- taken from inside the cheek) if there isn't enough foreskin. I'm not trying to scare you -- like I said, my son's hypo is quite severe and your son likely won't require the grafts.

Depending on the severity of your son's hypo, there may be options. If it's a mild hypo surgery may not be necessary (ie. if the opening is on the glans, just not centred). If the opening is underneath the head or on the shaft, then chances are it will require surgery to repair it. I also know of one mom who left the hypo as it was (it was mild) but the urologist corrected the dorsal hood so that the foreskin went all the way around, instead of being bunched up on top.

For 1st degree hypo, there is a procedure called GRAP which preserves the foreskin. It may be worth mentioning to your urologist. Unfortunately this procedure isn't possible with more severe hypospadias. Here's a link about GRAP:

http://www.cirp.org/library/restoration/gray1/

It's got some pretty technical language, but at least it gives you the name of the technique to write down, lol. You could also do a search and see if you find other sites that discuss it. Because it wasn't an option for my son I didn't look into it very much.

One thing I would suggest is getting a second opinion, if you have that option. The first urologist we saw told us our son's hypo repair was simply cosmetic and it was up to us whether to have it done. We decided to go ahead with it, but wanted a referral to a Children's Hospital. Imagine our shock when the paediatric urologist told us how severe our son's hypo was, after what the first quack -- I mean urologist -- had said. I still shudder to think what might have happened had we let him get his hands on our son.

A few links that I have found helpful and informative:

http://www.cornellurology.com/uro/co...ospadias.shtml

http://www.keepkidshealthy.com/welco...pospadias.html

http://www.hypospadiashelp.fsnet.co....0contents.html

http://groups.yahoo.com/group/hypospadias/

http://www.heainfo.org/forum/viewfor...de3698aeedd34c

As you go through the links you'll see that I've provided a couple that give information on hypospadias, as well as links to a couple of different hypo support groups. You'll find lots of people who have gone through this and who are more than willing to answer any questions you have. Feel free to PM me as well -- I'd be happy to answer any questions you have.

When do you see the urologist? I noticed that you are in Ontario (I'm in Alberta) -- what hospital will you be dealing with? Are you seeing a Paediatric Urologist? If you aren't, I would really recommend getting a referral to a PU. Ironically the first urologist we saw has his paediatric designation but sees mostly geriatric patients -- I just think if it's a paeds case you are better dealing with a paed doc, kwim? That's JMO, and I'm certainly not trying to tell you what to do, but based on my own experience I truly believe a PU is the way to go.

When you see the uro, make sure and ask what degree of hypo your son has. That will let you know what the next step(s) will be. Ask about chordee as well, I know it's often seen with hypo, although not always. You can also have chordee w/o hypo, but they do go hand in hand.

Please let me know what the doc says -- I'll be thinking of you. Hang in there, I know it's tough and scary right now, but it will be okay.

Darcey
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#3 of 30 Old 09-15-2006, 05:13 PM
 
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We most commonly, on this forum, discuss hyspospadias but there is a condition called hyperspadias where the urethral opening is on the dorsum of the penis rather than on the tip. It's also called epispadias. Is your son's "hypo" (pees toward the floor if standing) or "hyper" pees toward the ceiling if standing?

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#4 of 30 Old 09-15-2006, 06:18 PM
 
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just wanted to jump in here and sat thanks!!! I have a son 7 mos who is hypo, very mild and i have been avoiding going to the urologist, this is very very helpful!

Wife to Bear - Mom to DS 7, gifted with SPD and DD 2, a Joybunny!
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#5 of 30 Old 09-16-2006, 12:23 AM
 
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I started this thread http://www.mothering.com/discussions...d.php?t=518940 a few days ago, The main link is hypo repair without circ.

 
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#6 of 30 Old 09-17-2006, 10:24 AM - Thread Starter
 
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Thanks for all the info monnyswenn. I guess my son has the doral hood. I had never even heard of any of this till today. Theopening is on the head of the penis. I wouldn't even notice it was any different if it wasn't for the doral hood. Family doc looked at it and told me it was a very mild case. I did ask for a P.U. referral. I hear there is quite the wait. I am rather anxious to see him just to see what his or her plan would be. I am hoping they are forskin friendly. I wonder if he also has chordee? His penis at first looked like it had a slight bend down but over the past two weeks it doesn't look as bent. But maybe I just got used to it. Baybee as for peeing up or down I don't know. When I change his diaper and he pees it is straight up at me. He has got me a few times I am not yet used to having a boy. The midwife told me hyper but I don't know. I checked out all the links last night. I appreciate the help.
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#7 of 30 Old 10-18-2007, 08:57 AM
 
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Hi Carla 72, i just wondered how your son got on with any surgery he may have had? My son is 6 months old and has very mild hypo and will be having surgery soon to correct it but i am also keen to not get him circumcised. I am also wondering what future effects having this condition may have . . . will he look like any other boy/man in future? I look forward to hearing how you got on. I hope all went well x:
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#8 of 30 Old 10-18-2007, 12:54 PM
 
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Mild hypo dosnt need to be fixed. If when he gets older he wishes it fixed fine. But to do it to him now just dosnt make sense. Unless it is affecting how he urinates I would leave it be sea lion.
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#9 of 30 Old 10-18-2007, 09:23 PM
 
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my middle son was born with a hypospadias and they repaired it when he was 1 yr old. some dr.'s like to do it at 9 mo., but our pediatric urologist recommended we wait until 1 yr for a variety of reasons that were in our son's best interest. 9 mo. was just to young for both parties. the hardest part of the procedure,for me, was handing my babe to the anasthesiologist. i wanted to run and not let them perform surgery on him! he was a bit groggy after, but i nursed him and that helped. the nurses tried giving him a bottle, but he wouldn't take it and they told me that is when they knew he was breastfeed! he was able to muster a smile for a blond nurse when he was in trying to piddle after the surgery...that was heartwrenching for us to watch him in pain. his manhood was very swollen and bruised after, but it did not stop him from grabbing it and playing with it. i handled all the diaper changing for the first few weeks as dad couldn't stomach it. he looks semi-circed and we will never fully circ him as he could "spring a leak" at some point and need the extra foreskin for repair. he is now 3 and it has healed and he greatly enjoys it..all the time! what is up with boys? seriously! it was scary at the time of surgery, but in the whole scope of things minor. it was hard telling people why we were having surgery...my son has a deformed penis...i made jokes so i wasn't soooo embarrassed! our pediatric urologist thought the deformity was from pesticides in the ground water and was in the process of writing a paper about his hypothesis. if you have any questions or would like some more info on what it was like for us pm me and i would be happy to email or chat on the phone about it.
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#10 of 30 Old 10-18-2007, 09:25 PM
 
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oh as for not looking the same...we have three boys and a papa and not one looks the same! our eldest is circed....dad's decision not mine...i was against it! middle's is semi-circed and little one's is non-circumsised in all it's glory.
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#11 of 30 Old 10-22-2007, 11:59 PM
 
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Hey I was born with one in 1975,
I was also circumsized at age 3, 2 years after the surgery.
I just wanted to let you ladies know that your sons will be ok.
I am married now with 2 beautiful daughters and a son.
I never realized until a recent visit to a Urologist that I am considered semi Circumsized.

Just get the surgery for your boys and they will be fine.

This is from some one that only found out about his condition, after he was married.
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#12 of 30 Old 10-23-2007, 12:28 AM
 
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My nephew just had his surgery for this at 15 mos. It was pretty rough for him at first but with in a few weeks he was a ok.
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#13 of 30 Old 10-23-2007, 01:07 AM
 
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I am glad you did fine with it noproblems and you have the benifit of having most of your foreskin that is great.

I still maintain that if it is for cosmetic reasons only it should be up to the boy to decide when he is old enough if he wants it fixed or not.

 
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#14 of 30 Old 10-25-2007, 02:21 PM
 
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My Nehphew's surgery was medically necessary. His Urethra was too short and was not straight and his penis was becoming very crooked. If they had not done the surgery then he would continue to get UTI's and would not have been able to father children. But I agree if it is just for cosmetic purposes then no I would not due it as for Mckaid it was a very painful surgery.
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#15 of 30 Old 10-26-2007, 02:55 AM
 
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Hmm... I think an ex of mine had this. I don't recall the technical term (or if he ever said it), but the opening wasn't centered on the penis... it was just a tiny bit "down" from there.

The interesting thing about it was, that was why he *wasn't* circumcised. The doctors said it was a bad idea in that case. No dorsal hood or other issues that I could tell; everything seemed very normal (though his was the first foreskin I ever saw up close ;-).
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#16 of 30 Old 03-15-2008, 09:42 PM
 
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Originally Posted by carla72 View Post
I just had a baby with Hyperspadia ( I think thats what it is called) two weeks ago. I know nothing about it. its looks circumsised but I know its not!. We are going to see a urologist and I need to go in prepared incase they say I must circumsise him. I have been told he will need surgery within the year to lengthen the urithra. (sorry about all the spelling errors. brain hasn;t returned from labour yet) Has anyone gone through this with thier son? Does anyone have any good links on where to begin researching this? is circum. usually reccomeded? so many questions and little free time for research. Thanks in advance from anyone that takes the time to share with me.
hi carla my boy had his op in november dont mean 2 worry anyone but we just started experiencing probs with him (lack of urine in nappies ie) plus really bad temper tantrums !! anybody else who can understand this would be a hugh help!! thanks
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#17 of 30 Old 03-15-2008, 09:52 PM - Thread Starter
 
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wow thats an old thread lol my soin is 18 months now and has had his surgery. He actually had foreskin reconstruction so we saved the little foreskin he had and now he looks like any other intact boy and is funtioning "normal" only been a few months though
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#18 of 30 Old 03-16-2008, 01:02 AM
 
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Hey I was born with one in 1975,
I was also circumsized at age 3, 2 years after the surgery.
I just wanted to let you ladies know that your sons will be ok.
I am married now with 2 beautiful daughters and a son.
I never realized until a recent visit to a Urologist that I am considered semi Circumsized.

Just get the surgery for your boys and they will be fine.

This is from some one that only found out about his condition, after he was married.
I disagree. Everyone will have different experiences when it comes to surgery. Their condition will be different, their body will react differently, and the care they get will be different. Thats why its important not to take personal experiences as a full on endorsement for any kind of surgery.

I had the surgery when I was born, and have mixed feelings about it. And even if I could go back, I am not sure what I would do. But I was always aware that their was something different about me, and by 9th grade I was finally able to put a name to that feeling. I have talked to other guys who have had this done when they were little, and they all described that same feeling. I think the biggest mistake parents make with this, is assuming that they can make it magically go away. If surgery is done, (or if its not) its important that your sons are aware of what happened. Its also extra important to nurture a strong positive body image in these boys. Otherwise they could spend a lot of time being very confused and even ashamed about their body.

But the best thing to do, is if you dont HAVE TO do surgery, dont. If you can wait, do that, and let him decide. But if its very severe, the best thing to do is make sure they do as little as possible for what needs to be done to return it to a normal penis, and that DOES include a foreskin reconstruction if possible. (because we all know, that is part of what a natural, normal penis is)
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#19 of 30 Old 03-16-2008, 01:29 AM
 
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Thank you for the update Carla it is great knowing he was able to keep his foreskin I am curious though if the opening of his urethra was on the head of the penis why did you choose to go ahead with the surgery? More details might be helpful to others going through this as well.

 
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#20 of 30 Old 03-16-2008, 09:08 AM
 
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I disagree. Everyone will have different experiences when it comes to surgery. Their condition will be different, their body will react differently, and the care they get will be different. Thats why its important not to take personal experiences as a full on endorsement for any kind of surgery.
I couldn't agree more! Any type of surgery can result in nerve damage that affects sensitivity and I can think of few areas of the body where nerve function is more important. I agree that you have to look carefully at each individual case and make a determination in that case alone.


Quote:
I had the surgery when I was born, and have mixed feelings about it. And even if I could go back, I am not sure what I would do. But I was always aware that their was something different about me, and by 9th grade I was finally able to put a name to that feeling. I have talked to other guys who have had this done when they were little, and they all described that same feeling.
I once lurked for a few weeks at a hypospadias/epispadias discussion forum for parents and men who had hypospadias/epispadias. While it is true that the men who had surgical correction as infants were generally happy with the results, the men who had not had correction of minor cases were equally happy and had no intent to have it corrected.


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But the best thing to do, is if you dont HAVE TO do surgery, dont. If you can wait, do that, and let him decide.
I think you should establish parameters as to whether it should be done or not. Surgeons are all too happy to surgically correct what is not a functional issue and thus does not need correction. The essential questions are (1) "will the child/man be able to stand and urinate as other men do?" and (2) "will he be able to reproduce efficiently?"

Clearly in the case of Mommyswenm's son with the urethral opening at the base of the penis, standing to urinate would be impossible and during intercourse, his semen would spill outside the vagina making reproduction at the least difficult and at worst, impossible. But in cases where the urethral meatus is just not at the tip or is elongated, the condition will not affect the ability to stand to urinate or will not result in the semen spilling outside the vagina. These days, there seems to be an emphasis on cosmetics over function. The penis is not a particularly visually appealing organ to begin with and it is carefully hidden from view for the vast majority of a man's life. I just can't see that visual appeal is such an important issue that function should be risked for slight cosmetic benefit.

Quote:
But if its very severe, the best thing to do is make sure they do as little as possible for what needs to be done to return it to a normal penis, and that DOES include a foreskin reconstruction if possible. (because we all know, that is part of what a natural, normal penis is)
It is heartening to see that American doctors are now offering foreskin repair instead of just cutting it off and tossing it into the trash. One of the main objects of not circumcising our sons is to preserve their sexual sensitivity and function. I think it is equally important to carefully evaluate whether surgical correction of hypospadias/epispadias is really necessary for function or if it will just be a cosmetic correction at the risk of diminished function.


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#21 of 30 Old 03-16-2008, 12:03 PM
 
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OT - Frank - So glad to see you back! We have sorely missed your expertise!

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OT - Frank - So glad to see you back! We have sorely missed your expertise!
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#23 of 30 Old 03-17-2008, 08:53 AM
 
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Thank you ladies!


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#24 of 30 Old 03-18-2008, 05:23 PM
 
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Frank! So good to see you again!

Thought I would throw a quick update about my son in here as well. He will be 3 at the end of the month, and it has now been over a year since his last surgery. Unfortunately his second surgery (which was to correct his hypospadias -- first surgery addressed the chordee only) was unsuccessful, and he did require a third surgery. That one was successful, and so far, so good! There are of course complications that could arise down the road, but we will take it as it comes, and not dwell on it in the meantime.

Ds does look circ'ed, unfortunately foreskin restoration wasn't an option in his case. Our urologist did suggest removing the excess skin (it is kind of bulky on the underside), however we told him that we felt that would be a cosmetic decision best left up to ds, when he is old enough to decide for himself. Our uro completely supported that decision, and I have to admit it was nice to be able to leave something for ds to decide for himself.

In retrospect, knowing what I know now -- we originally though ds's hypo repair was cosmetic only, but dh and I had decided to go ahead with it. However, if I had to make the decision again, if ds's hypo repair was actually cosmetic, no way would I do it. Carla, that's not directed at you -- I just wanted to throw that in there.
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#25 of 30 Old 05-03-2008, 11:00 PM
 
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In retrospect, knowing what I know now -- we originally though ds's hypo repair was cosmetic only, but dh and I had decided to go ahead with it. However, if I had to make the decision again, if ds's hypo repair was actually cosmetic, no way would I do it. Carla, that's not directed at you -- I just wanted to throw that in there.
I'm confused. Would you do it or not, with the case as it is? Was it really cosmetic? This is something I will have to face eventually. My latest son has rather severe hypospadias, down at the base of his penis. In fact, it was announced at birth that he was a girl, since he was premature, and girls are sometimes quite enlarged at that age. But he's definitely a boy. So I'm gathering all the info I can.
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#26 of 30 Old 05-04-2008, 03:57 AM
 
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quarteralien I think she ment that they did it knowing it was cosmetic but now she wouldnt do it for that reason.

Since your ds's is at the base of the penis that is more than cosmetic it will effect how he uses the bathroom and later on will make it next to impossible for him to father children naturaly since the sperm will mostly fall outside the vagina.

There are ways to preserve as much of the foreskin as possible so be sure and work with a Dr on that to save as much as you can.

Here are some links on hypo that have a lot of information one of them you have to join to see but it is free and has some good information:
Hypospadious: http://www.cirp.org/library/restoration/gray1/

Hypospadious: http://images.google.com/imgres?imgu...l%3Den%26lr%3D

Hypospadious: http://www.emedicine.com/PED/topic1136.htm

Hypospadious: http://www.medscape.com/content/2004...89956.fig4.jpg

Hypospadious: http://www.medscape.com/viewarticle/489956_8

Hypospadious graph: http://www.hypospadias-emotions.com/images2/hyposp6.jpg

 
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#27 of 30 Old 05-04-2008, 12:08 PM - Thread Starter
 
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thisis an old thread I started it when my son was only weeks old. HE is now 20 months. We did the hypo rpair and the foreskin reconstrution. He only had half of a foreskin called a dorsal hood. The hypo repai was not as much of an issue as the dorsal hood. After talking to teenage boys and grown men with "untouched" dorsal hood they all wish they had had it fixed...many were celebet because of it. My son now has an intact funtioning foreskin that he would not have had before. He has had his follow up and as too date we have had no issues. I know that this is not the case for all and I also know it is early yet. UI found the yahoo group moms with boys with hypospadias extemely helpful. More than not are for circs but if you can get past that they have a wealth of knowledge. Also lots of moms that are for reconstructing....mod is pro "keep the foreskin" and very helpfull
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#28 of 30 Old 05-04-2008, 12:23 PM
 
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Originally Posted by carla72 View Post
thisis an old thread I started it when my son was only weeks old. HE is now 20 months. We did the hypo rpair and the foreskin reconstrution. He only had half of a foreskin called a dorsal hood. The hypo repai was not as much of an issue as the dorsal hood. After talking to teenage boys and grown men with "untouched" dorsal hood they all wish they had had it fixed...many were celebet because of it. My son now has an intact funtioning foreskin that he would not have had before. He has had his follow up and as too date we have had no issues. I know that this is not the case for all and I also know it is early yet. UI found the yahoo group moms with boys with hypospadias extemely helpful. More than not are for circs but if you can get past that they have a wealth of knowledge. Also lots of moms that are for reconstructing....mod is pro "keep the foreskin" and very helpfull
thats great! deciding on what to do with a boy born with hypo is a rocky journey, and it often takes parents and children in directions they are not always sure of. Its a hard process to go through, and its nice to see things have turned out well, and on top of that, no complications either!
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#29 of 30 Old 08-26-2013, 01:45 PM
 
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My son suffer from severe hyperspadia and i realised that is penis is not growing could you be kind enough and tell me after your son did the surgery how soon after his penis start to grow.  I am worried and concern he is almost 4 years old and cannot stand to urinate

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#30 of 30 Old 08-26-2013, 07:03 PM
 
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Originally Posted by Nordiabent View Post

My son suffer from severe hyperspadia and i realised that is penis is not growing could you be kind enough and tell me after your son did the surgery how soon after his penis start to grow.  I am worried and concern he is almost 4 years old and cannot stand to urinate

Welcome to MDC!

 

You said your son's penis isn't growing.  Do you think that only because he can't pee standing up?  There are some men that just don't pee standing up.  Do you have an intact friendly doctor, either a primary care doctor or a specialist?  I'm sensing that you may not be in the US?

 

If you could/would give more info, we may have ideas for you.  

 

Best wishes,

Sus


Baby the babies while they're babies so they don't need babying for a lifetime.
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