Diagnosis: Hypospadias Chordee - Mothering Forums
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#1 of 21 Old 04-22-2004, 01:56 PM - Thread Starter
 
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Hey all,

I'm hoping someone here will have suggestions/information.

My son has been diagnosed as being hypospadia chordee - in other words, his little peehole (meatus) is on the bottom side of his glans, instead of the end and his penis will eventually curve downwards during erections because he has too little skin on the underside of his penis. The pediatrician said surgery and circumcision are the solutions.

I'm going to another ped for a second opinion next month, but there's no denying his peehole is on the bottom side of his penis right at the corona at the bottom of the head. If his penis was sticking straight out, he'd pee straight down instead of straight ahead. I don't know how bad that is, but I imagine it could cause problems peeing standing up I really don't want to resort to surgery if there is another solution. I did NOT circ him because I believe the skin there has value and it's frustrating to think I may have to do it anyway. My son is nearly 11 months old.

The websites I've read say they circumcise to use the foreskin as skin grafts. Is that true or is that the typical ignorant "circ him and it'll solve all problems" mentality?

Any suggestions, help, support, ideas????

madison
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#2 of 21 Old 04-22-2004, 02:42 PM
 
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Hmmm...sounds like circumcision would make no sense (IMO). What does foreskin have to do with it?!?! I have heard of this but as for peeing, many men pee sitting so no biggie there (DH does it alot!)

The erection thing...well some say curved is cool! A long as there is no pain I am sure it won't affect his sexuallife when he is an adult...KWIM? BTW, this is all opinion, I've done no research on this problem...
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#3 of 21 Old 04-22-2004, 03:04 PM
 
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Some good news! (among the bad) Your son does not have a severe case of this and there is little to worry about. Severe cases are the ones where the urinary opening is at the base of the penis or even further down in the scrotum. Since your son's opening is on the glans, he has what is considered a mild case.

More good news! You may not need to do anything. I would recommend waiting until your child is around 3 or 4 years old before making the final decision. At that age, you'll know whether it is going to impact him. It's just too early now to know. The benefit of waiting is that his penis will be much larger and the results of surgery should be much better. There is also the consideration that older children tolerate anesthesia much better than infants or young toddlers. That is a very important consideration.

More good news! In the past, the foreskin has been used as donor material to fashion the urethra that is normally too short in these cases. There is a fairly new procedure that has been used in Scotland that is much less invasive, has a significantly shorter recovery time, a higher success rate and does not use the foreskin as donor material! I don't have time right now but I will get you a link to the information very soon.




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#4 of 21 Old 04-22-2004, 03:24 PM
 
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Hi, my 2 1/2 year old son has a mild epispadias. He had surgery scheduled to repair and inguinal hernia and the urologist was going to repair the epispadias at the same time. I did my research and decided against having the epispadias repaired. I'm very glad I did. I do notice that when he pees the urine does go up a little instead of straight out but this is always something that can be fixed later in life, with his consent. I found a yahoo group for men and parents of children with this and they provided invaluable advice. Please consider joining, I'm sure they can help you too:

http://groups.yahoo.com/group/hyposp...adiasassnforum
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#5 of 21 Old 04-22-2004, 05:14 PM
 
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good to see you here! i knew frank had some valuable info but wasn't able to recall what it was. hope it will help!

suse
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#6 of 21 Old 04-23-2004, 12:05 AM - Thread Starter
 
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Thank you very much, Frank!!! I would love that info when you have time. I'm getting a second opinion next month, so there's no huge rush.

Trish, thanks for the link to that site! I will look into it further, when my little one isn't ready for bed and milk, lol!

Whew. I've tried so hard to keep him intact against the wishes of my family and friends and it's difficult to think that he may have complications to consider! Ya know?

Hey Suse

madison

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#7 of 21 Old 04-23-2004, 12:32 AM
 
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Here is the report:

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

There is some very interesting information in the report and information that should comfort you. Among the points are that this procedure has been in use more than 10 years, has had extensive follow up with outstanding reports of the boys having a high percentage of feeling their penis is normal and that 89% of these procedures being done on an outpatient basis.

I can tell you from talking with other mothers of sons with hypospadius that doctors are reluctant to try anything new and tend to give this information short shrift. Don't let them do that! If they seem to be passing it off, demand a detailed explanation of exactly why they would not use the procedure and if they can't do that, go find another doctor. From what you have said, your son's case is very mild and he should be a prime candidate for this procedure. He deserves every consideration to have the least invasive and least debilitating procedure possible. Accept no less! Do not tolerate a surgeon that insists on being two decades behind in his knowledge and surgical practice.

Good luck and let us know how things go.




Frank
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#8 of 21 Old 04-23-2004, 03:12 PM
 
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Do not tolerate a surgeon that insists on being two decades behind in his knowledge and surgical practice.
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#9 of 21 Old 04-23-2004, 09:16 PM
 
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i wouldnt worry about getting the second opinion because it doesnt affect your ds now, and you will be better able to tell how much affect it will have on him when he is a bit older. drs are very keen to cut what they dont understand, so they may sway you into thinking it is necessary.

and your baby is a long way from sexual problems at the moment. why not have him seen when he is older...there may be some new 'miracle' fix for the condition in 10 years!
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#10 of 21 Old 05-04-2004, 05:25 AM
 
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Hi Madison
My son also has hypospadias. He is 13 months old. He does not seem to have chordee, as yet, though it's hard to say. The ped we took him to wants to operate on him, but after long discussions, and thinking of all the pros and cons, my DH and I have decided that we don't want him to have surgery. We would like to wait until he is older and maybe reconsider if it is proving to be a big deal, or if our son wants the operation.
It was a difficult decision to make- we just want to do the best thing for our little boy. The ped listed the reasons for surgery, and one of the biggies was cosmetics. He then said that our son would look liek a circumsized boy. To me this makes no sense, we live in new Zealand where circumsizion is very rare. By circumsizing him he would look much more different from other boys than if we leave him be. Aside from that, there is the peeing issue. The ped said he may have to pee sitting down, but as he only has mild hypospadias I think this is unlikely. It's hard to know how much of a big deal this will be, so we'll have to wait and see. As for the chordee, well, if our son develops this when he's grown up and sexually active, it'll be something for him to decide about. At this stage his penis does not look bent when erect, and the ped said this is a good sign.
Anyway, wanted to let you know you're not alone, and I'd be interested to hear what you decide. Best of luck!
-Sophie
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#11 of 21 Old 05-04-2004, 09:37 AM
 
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I don't think looking like others should ever be a factor, either way. I personally wouldn't allow them to circ my son if he had this condition.

Peeing sitting down...not a problem, and less messy too! I have one son that sits to pee and the other prefers to stand, but I'm always trying to get him to sit. I'm tired of cleaning up after him when he misses.
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#12 of 21 Old 05-05-2004, 05:19 PM
 
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I have two sons who both have hypospadias, ages 3.5 and 7 months. The diagnosis was missed at birth and we just learned about it three months ago for both of them. (I believe this is because American doctors don't know enough about intact penises to recognize anomalies.)

We just returned from the Hypospadias and Epispadias Association (HEA) annual conference last weekend in Toronto, which was very informative. We have not made final decision about surgery for our boys, but we are leaning against doing anything until they are old enough to participate in the decision. We learned at the conference that surgery after puberty increases the chances of complications, but that any time before puberty the results are likely to be good. There is a window of time between about age 7 and puberty (11 or so) when a boy can be an informed, involved participant in this decision.

There are valuable resources on the internet. The HEA has a website (www.hypospadias.net) and a yahoo group: http://health.groups.yahoo.com/group...diasassnforum/

There are also a couple of other listserves that have been very helpful to us:
http://health.groups.yahoo.com/group/hypospadias/
http://health.groups.yahoo.com/group...pospadiaskids/

The last one is an active group and is specifically for parents.

Make sure you do get a second opinion. The first doctor we saw said that my baby had significant enough chordee to make surgery necessary. A doctor at the Toronto conference examined our boys and saw no noticeable chordee in either one. We are going for another opinion later this month.

As someone else mentioned, there are surgical options that do not involve circumcision. The doctor in Toronto said that these have higher complication rates and that the procedure that has the best chance for success uses the foreskin in the repair. But this is his opinion. I also talked to adults with mild hypospadias at the conference who never had surgery and are happy with their sexual function. One even said that his partial hooded foreskin gives him the best of both worlds.

My best advice is to do your homework and trust your instincts. Good luck!

-Andrea
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#13 of 21 Old 05-05-2004, 08:28 PM
 
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Andrea:

It's great to see you take such a calm and measured approach. With the way you are going about it, I'm sure you will make a well informed decision. Isn't it amazing how two doctors can come to such differing conclusions!

There are many men who have hypospadius and epispadius who have not had repair surgery and are completely happy with their status. It is definitely the correct thing to do to involve your sons in the decision as much as possible. After all, they are the ones who are going to have to live with the results, good or bad. They definitely have a right to be involved. Luckily, it sounds as if their cases are very mild and their penis looks normal except when their foreskin is retracted. This nullifies all of the worries about "locker room" comments. That's great and any lover worth her salt won't care.




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#14 of 21 Old 05-12-2004, 03:04 PM
 
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Madison, I met you for coffee in Portland with Kelts like a good 3 years ago. First off, congrats on your baby boy, I was so happy to hear that you are now a mama.
I don't get much time with 3 kids to post or even read much anymore but every once in awhile I find something I need to reply to.
My oldest son was born with hypospadias in 1996. His opening is still near the tip of his penis, just slightly on the underside. We were not going to have him circumsized anyway but the hospital wanted us to just leave it alone and have it checked out as he grew. All was well, no problems, but as he got older I started to notice that his penis didn't come to a tip or point like the other intact boys I had seen. He actually looked more like he was circumsized, kinda blunt on the tip. As he grew his foreskin retracted and just kinda hung there. Come to find out later that he had a hooded foreskin, which is fairly common in boys born with hypospadias. The foreskin was not covering the entire circumfrence of his penis. Think of it this way, if you are looking strait at the head of the penis his foreskin was in a C shape with the opening being on the underside were the hole had formed. I guess that is the bodies way of making sure he could urinate freely, etc. Since his foreskin didn't go in a complete circle he didn't have the ring of muscle at the tip that kinda holds it all together. So as it retracted it just sorta hung off the penis. When he was 13 mo. old the uroligist decided that he wouldn't need any reconstructive surgery but that we could have him circumsized if we wanted too.
We went back and forth about whether to have him circed and finally decided to have it done because his foreskin was incomplete and not really functional anyways, or so we told ourselves.
We had him put under and circed when he was 13 mo. old. And we regreted it the minute he woke up. He screamed and screamed and everytime he peed he would scream and run around in circles. And then it got infected, probably from feces. He is fine now, and he knows that his hole is "a little off" and he blames that everytime he misses the toliet!
I don't know if I really have any advice for you, but I wanted to share our story. You have to make the decision that you are comfortable with. I personally wish we would have waited and let him make the decision for himself.
As far as the peeing while sitting down I do think that can be a huge deal for some boys. Not as far as the teasing but some boys may feel like less of a "boy" if they have to sit. I know, just one more thing to consider in this already complacated issue.
Let me know if there's anything I can do.
J&G's mom
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#15 of 21 Old 05-16-2004, 03:59 PM - Thread Starter
 
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Thank you so much for more responses and more information! I really do appreciate it soooo much.

J & G's Mom! Hello!!! Good to hear from you. Congratulations on your third child, you just had G & J when I was up there supposedly camping Thank you so much for your comments and suggestions, I really am thankful. And thanks for congratulating me on Ian, it's about time I had a kid, huh??? He is the light of my life and I am loving every moment (well, nearly) of motherhood. He turns one in 2 weeks and I can hardly believe our first year has gone by so fast already. Just amazing! Do you keep in touch with Kelts? We lost touch and I'd love to reconnect if you know her whereabouts. My email is childrenaremylife at hotmail.com. I'm in Phoenix now, moved from LA 5 months ago, in with friends, so I could stay mostly at home with Ian It's working out well, but it's HOT here, ugh! anyway, thanks again and I hope all is well with you and yours in Portland!
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#16 of 21 Old 05-16-2004, 04:14 PM
 
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I dated a man for a few years who had been born with a hypospadia of the penis. The subject only came up because it wasn't quite obvious to me whether he was circumcised, or not. (I had never seen an uncircumcised adult penis at that point, but I could see that his had more skin than I was used to seeing, so I asked questions.) He explained that he was not circumcised at birth because he had been born with this problem and his parents had been advised that the extra skin would be needed for corrective surgery when he was older. He had the surgery when he was about 2, IIRC, but it seemed like they just used enough skin to do the repair and didn't remove any extra to "fully" circumcise him. This would have been in the 60s, btw. I would have thought repairs for this would have come a long way by now. It looks like you've been given some good sources for information. I would second everyone in saying there's no reason to rush into doing anything now, and definitely get a second, third, fourth, opinion.
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#17 of 21 Old 06-03-2004, 01:02 AM
 
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My son was born with mild hypospadias as well and after a year and half of researching all i could i finally committed to having the surgery. His opening was on the underside of his penis and he had chordee and only a foreskin on the top of his glans. I truly agonized over this as i am strongly against circumcision. I talked to many men on the hypospadias support group and other parents and read all the research i could. There is so much differing of opinions on what is the right choice. You really need to be sure of your decision. For me, in my eyes of course he was perfect and i wouldnt change him but i was worried about how he would feel as a young man and i didnt want him to be insecure about himself for being 'different' than average. I also considered that i rather it heal while he is young than to be 18 and have a red angry circumcision scar. We went to see a urologist that specialized in children with this type of anomolies in another city and he recommended the surgery be done at 18 months. Before he was out of diapers and would see a change in his penis and before toilet training. I wont lie I bawled my guts out through the whole surgery, people in the waiting area must of thought someone died because i was sobbing like a maniac. He was asleep for the surgery . The doctor came out and said that the surgery went well but because his hooded foreskin was not retracted at all he had to peel it back.. ooo that sounded horrible, and i had requested that they save his foreskin and try and stretch it around but they needed it to patch the underside of his penis and he didnt feel that there was enough tissue.
After the surgery he woke up and he was insanely hungry ( he had not nursed or eaten since after midnight and it was now lunchtime ) so he was screaming for me and they wouldnt let me see him at first untill i demanded to nurse him to comfort him and i didnt care if he threw up on me. Then he was ok for awhile.. his penis was very red and very swollen, we stayed at the hospital for about an hour and half so they could monitor him, then we had an hour and half drive home, plus we had to pick up codeine for him. By the time we got home and took him out of the car he was in SOOO much pain! He peed in his diaper and screeched and stood on his toes it was horrible to see him in soo much severe pain. THe codeine helped the pain but left him dopey and unable to walk. I lay in bed with him for 2 days and nursed him and kept his diaper filled with calendula ointment so it would heal faster. His whole penis looked red for a long time. I cant imagine how people can circumcise a newborn with no anesthetic and no pain releif, it must be so incredibly painful.
Looking back I am still not sure i made the right decison because it is so against MY feelings but I really tried to make my decision on what was best for him, and I cant honestly say i know if it did that. Now his penis is healed and he can pee great standing up, but he has alot of scar tissue from the circumcision and i have no idea if this is normal for a circumcised boy because i have nothing to compare it to. I m sorry i couldnt give any advice just my experience, please feel free to ask questions.
The other thing to consider is that 10-20 years from now when your child would have a choice in whether or not they wanted surgery is that techniques or laser surgery would be much more advanced and give better results. Also once surgery is done its done and theres no choice after that.. so read as much as you can. And make sure your doctor specializes in this area of urology with children.
Tanja
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#18 of 21 Old 06-03-2004, 01:48 AM
 
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Tanja- Thanks so much for sharing your experience with hypospadias here. There are so many moms who come looking for some support- but so few who have first hand knowledge of the surgery. I try to send people here and there to research, but your story is really truly so helpful... you don't tell people what to do one way or the other... and you sure did agonize over the decision- your answer was so carefully thought out- as was obviously your decision. I think that other moms will have a lot more to go on because of your generous sharing of that story.

Love Sarah
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#19 of 21 Old 06-03-2004, 02:22 AM
 
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Tanja:

Considering everything, I think you did make the right decision.

His hooded foreskin was non-functional as a foreskin and i doube any amount of stretching would have ever made it functional. With the skin even all around, if he does want to stretch it into a foreskin as an adult, he can do it and get good cosmetic results plus the sensitivity will return to some degree. With the hooded foreskin, his sensitivity would have been about that of a circumcised man any way.

With the distal urethral opening on the underside, it would have probably have been difficult for him to stand to urinate and hopefully that is resolved. Also, with the opening on the underside, he didn't have a functioning frenulum so there is no loss there.

Yes, there was pain. That's unfortunate but it also gives us a window of understanding of what neonates go through. However, I'm surprised the codene didn't offer better pain control. I've used it before and found it extremely effective. Maybe the dosage wasn't strong enough. Hopefully, this is a closed chapter for you and your son.





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#20 of 21 Old 06-03-2004, 06:29 AM
 
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Thanks for sharing your story Tanja, it was very real and an honest account and it was very interesting. How long ago did your son have the surgery? My baby is 14 months now and we have pretty much made up our minds that he won't be having the surgery, not yet anyway. I know what you mean about just wanting to do the best thing for our sons- it is so difficult because you want to be able to see into the future and you can't, so have to try and make the best decision.
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#21 of 21 Old 06-03-2004, 10:26 AM
 
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Thankyou everyone for your kind words and support
My son is now 4 and half so the surgery was three years ago. He has had no complications and his penis is well healed and he can pee standing up no problem.
After surgery i gave him arnica for swelling and bruising and i used calendula ointment and then after vitamin e so his scar would heal.
I had another son after him and he was not born with hypospadias so he is not circumcised, although my husband is. Interestingly enough when i was pregnant with my first son, my dh was talking about circumcision and and i was adamantly against it and after seeing what our son had to go through he could never imagine inflicting this pain for no reason on a baby.
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