Guest guest Posted March 17, 2003 Report Share Posted March 17, 2003 Pat, My son has had three hypospadius repairs. I am curious what Dr. H means by hypospadius with a twist....does he have a curved penis (chordee)? My son had hypospadius, undescended testicle and chordee and is all healed up! Jake had his first surgery done when he was 15 months old and weighed around 14 pounds (prior to a GT placement). His penis was given testosterone shots twice prior to his first surgery, to allow the foreskin to grow to be used during the surgery to create the uretha. I met with five different urologist before I made the decision on who would operate on Jake. One of the urologists worked with Dr. H, whom she wanted us to use, but was not covered under my plan, and is far from home (we live in Virginia). We choose a local doctor, who was absolutely fabulous. Jake had an extremely severe case of hypospadius so two operations were needed to correct the uretha, then there was a small leak and he had one last quick repair last May. I have heard some horror stories, so I would meet with several surgeons to compare. I would ask questions about how severe they think his hypospadius is, what technique will they use to repair, what is their success rate (ie. how many leaks do they get per 100 surgeries), and make sure they are comfortable with working with Dr. H's protocal (ie. checking in the night before surgery for an iv because B can't be fasted and not going home until everything is under control). Dr. H provided us with a fabulous letter which we still use. Also, ask questions about how they handle pain management. I am rambling on here. Let me know if you have further questions. Alison > Hello to All! > has his first urology appointment on Friday. He has, as Dr H put it, hypospadius with a twist. I saw that others were asking questions pertaining to first appointments, and thought i would post along those lines. Are there any questions that should be asked, or info that we should give the urologist at a " first " visit? What should we expect him to do? At what age is surgery for hypospadius usually done? is very small, even for an RSS child, and so is his " equipment " , will this cause problems, or should surgery be held off until either he or his " equipment " is larger? > Any info at all would be greatly appreciated! Thanks for any help you all can give! > Pat (g-ma to , RSS, 15 months, 12# 7oz, 26 " , GT) > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 17, 2003 Report Share Posted March 17, 2003 Hiya Pat, I can't believe I didn't know that B had hypospadias. Coby has a very sever case as well that will require 2 surgeries to repair. I believe there are 3 stages and Coby is a stage 3. His penis is bent and the urethra opening is at the base of his penis. Sorry I can't remember the medical words as well as Alison. However, his testicles have dropped and last week the endo said that his penis looked to be a good size. I didn't realize that Coby's hypospadias and sacral dimple both could be related to him being IUGR. Anyways, back to the subject. I met with Coby's urologist the first time while I was pregnant. They found the hypospadias while I was about 28 wks pregnant. We then saw him again when Coby was 2 months old and just so happened he did Coby's hernia surgery at that time as well. We go back to see him next month when Coby is 6 months old. We are going to schedule the surgery at that time. His doc wants to do the surgery before Coby is a year old. I don't know if he will change his mind when he finds out that Coby is still small or not. He knew the situation and still felt that before a year old was going to be a good time. > Hello to All! > has his first urology appointment on Friday. He has, as Dr H put it, hypospadius with a twist. I saw that others were asking questions pertaining to first appointments, and thought i would post along those lines. Are there any questions that should be asked, or info that we should give the urologist at a " first " visit? What should we expect him to do? At what age is surgery for hypospadius usually done? is very small, even for an RSS child, and so is his " equipment " , will this cause problems, or should surgery be held off until either he or his " equipment " is larger? > Any info at all would be greatly appreciated! Thanks for any help you all can give! > Pat (g-ma to , RSS, 15 months, 12# 7oz, 26 " , GT) > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 17, 2003 Report Share Posted March 17, 2003 --- Hi Pat, n had severe hypospadias with severe chordee (the bend in the penis) and undescended testicles. Since you're so good at researching, you've got a whole new subject to start working on now! mumswithhypospadiaskids is a good one. Go to more than one pediatric urologist, as many as you can, and find the perfect one. That is the most important thing because it's a very tricky surgery and you want one that knows exactly what he's doing. They usually like to do it in normal-sized kids between 9 - 12 months. n had his first surgery at 14 months and he weighed about almost 13 lbs. His next one was six months later. They like to do it early because of psychological reasons, but has been through so much already, poor guy, I know you're in no hurry for something else. If you have any more questions on the subject, feel free to ask. Cindy In RSS-Support , " pcpets " wrote: > Hello to All! > has his first urology appointment on Friday. He has, as Dr H put it, hypospadius with a twist. I saw that others were asking questions pertaining to first appointments, and thought i would post along those lines. Are there any questions that should be asked, or info that we should give the urologist at a " first " visit? What should we expect him to do? At what age is surgery for hypospadius usually done? is very small, even for an RSS child, and so is his " equipment " , will this cause problems, or should surgery be held off until either he or his " equipment " is larger? > Any info at all would be greatly appreciated! Thanks for any help you all can give! > Pat (g-ma to , RSS, 15 months, 12# 7oz, 26 " , GT) > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 18, 2003 Report Share Posted March 18, 2003 Pat Before I go into MY advice on the surgery, can you give me plain language?? Sorry this mom can't keep all the medical terms straight LOL Is this surgery for undescended testicles or something more? IF it's undescended testicles.....I'll give ya my encyclopedia of personal experience!! Let me tell you I learned many things from that surgery the hard way!!! Debby urologist > Hello to All! > has his first urology appointment on Friday. He has, as Dr H put it, hypospadius with a twist. I saw that others were asking questions pertaining to first appointments, and thought i would post along those lines. Are there any questions that should be asked, or info that we should give the urologist at a " first " visit? What should we expect him to do? At what age is surgery for hypospadius usually done? is very small, even for an RSS child, and so is his " equipment " , will this cause problems, or should surgery be held off until either he or his " equipment " is larger? > Any info at all would be greatly appreciated! Thanks for any help you all can give! > Pat (g-ma to , RSS, 15 months, 12# 7oz, 26 " , GT) > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 18, 2003 Report Share Posted March 18, 2003 ---Debby, n's other problems are solved, but he still has undescended testicles. Anything I should know about from your bad experience? Cindy In RSS-Support , " Deb B. " wrote: > Pat > Before I go into MY advice on the surgery, can you give me plain language?? > Sorry this mom can't keep all the medical terms straight LOL > Is this surgery for undescended testicles or something more? > > IF it's undescended testicles.....I'll give ya my encyclopedia of personal > experience!! Let me tell you I learned many things from that surgery the > hard way!!! > > Debby > > > urologist > > > > Hello to All! > > has his first urology appointment on Friday. He has, as Dr H > put it, hypospadius with a twist. I saw that others were asking questions > pertaining to first appointments, and thought i would post along those > lines. Are there any questions that should be asked, or info that we should > give the urologist at a " first " visit? What should we expect him to do? At > what age is surgery for hypospadius usually done? is very small, > even for an RSS child, and so is his " equipment " , will this cause problems, > or should surgery be held off until either he or his " equipment " is larger? > > Any info at all would be greatly appreciated! Thanks for any help you > all can give! > > Pat (g-ma to , RSS, 15 months, 12# 7oz, 26 " , GT) > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 18, 2003 Report Share Posted March 18, 2003 > > Pat > > Before I go into MY advice on the surgery, can you give me plain > language?? > > Sorry this mom can't keep all the medical terms straight LOL > > Is this surgery for undescended testicles or something more? > > > > IF it's undescended testicles.....I'll give ya my encyclopedia of > personal > > experience!! Let me tell you I learned many things from that > surgery the > > hard way!!! > > > > Debby > > > > > > urologist > > > > > > > Hello to All! > > > has his first urology appointment on Friday. He has, > as Dr H > > put it, hypospadius with a twist. I saw that others were asking > questions > > pertaining to first appointments, and thought i would post along > those > > lines. Are there any questions that should be asked, or info that > we should > > give the urologist at a " first " visit? What should we expect him > to do? At > > what age is surgery for hypospadius usually done? is very > small, > > even for an RSS child, and so is his " equipment " , will this cause > problems, > > or should surgery be held off until either he or his " equipment " > is larger? > > > Any info at all would be greatly appreciated! Thanks for any > help you > > all can give! > > > Pat (g-ma to , RSS, 15 months, 12# 7oz, 26 " , GT) > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 18, 2003 Report Share Posted March 18, 2003 Cindy, I know you addressed your question to Debbie regarding undescended testicles, but thought I'd throw my two cents in too. My son was born with both testicles undescended. One came down within a few days. The other did not and it required multiple surgeries to fix and ultimately couldn't be saved. How old is n? From what I understand you don't want to wait too long to have the surgery, because the longer it is " up there " increases your chances of having a testicle that doesn't function properly. Jake's testicle being ultimately removed was not due to this, but because it was just too malformed to begin with. I think most doctors like to do the surgery less than 1 year old, but since our kids are so small they will wait a little longer. My son's first surgery was at the age of 15 months. I hope this is helpful, Alison > > Pat > > Before I go into MY advice on the surgery, can you give me plain > language?? > > Sorry this mom can't keep all the medical terms straight LOL > > Is this surgery for undescended testicles or something more? > > > > IF it's undescended testicles.....I'll give ya my encyclopedia of > personal > > experience!! Let me tell you I learned many things from that > surgery the > > hard way!!! > > > > Debby > > > > > > urologist > > > > > > > Hello to All! > > > has his first urology appointment on Friday. He has, > as Dr H > > put it, hypospadius with a twist. I saw that others were asking > questions > > pertaining to first appointments, and thought i would post along > those > > lines. Are there any questions that should be asked, or info that > we should > > give the urologist at a " first " visit? What should we expect him > to do? At > > what age is surgery for hypospadius usually done? is very > small, > > even for an RSS child, and so is his " equipment " , will this cause > problems, > > or should surgery be held off until either he or his " equipment " > is larger? > > > Any info at all would be greatly appreciated! Thanks for any > help you > > all can give! > > > Pat (g-ma to , RSS, 15 months, 12# 7oz, 26 " , GT) > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 18, 2003 Report Share Posted March 18, 2003 Cindy I'll get back to on this tomorrow. I've been typing here at the computer for 4 hours now on a documentation thing and I need to move around a bit (and probably wash a ton of dishes!!) I'll tell you all my " gee I just learned a lesson the hard way " stories soon. Debby urologist > > > > > > > Hello to All! > > > has his first urology appointment on Friday. He has, > as Dr H > > put it, hypospadius with a twist. I saw that others were asking > questions > > pertaining to first appointments, and thought i would post along > those > > lines. Are there any questions that should be asked, or info that > we should > > give the urologist at a " first " visit? What should we expect him > to do? At > > what age is surgery for hypospadius usually done? is very > small, > > even for an RSS child, and so is his " equipment " , will this cause > problems, > > or should surgery be held off until either he or his " equipment " > is larger? > > > Any info at all would be greatly appreciated! Thanks for any > help you > > all can give! > > > Pat (g-ma to , RSS, 15 months, 12# 7oz, 26 " , GT) > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 18, 2003 Report Share Posted March 18, 2003 Hi Cindy Adam's surgery was more successful than Alison's (thank goodness). At birth the docs could see/tell that both his testicles were still " up there " . They monitored it for a year then sent us to a urologist. The urologist said that they like to have the surgery between 12-18 months. Adam had his at 18 months because the doctor wanted as much weight on him as possible without missing the time line. At that time no one had even suggested he had a growth problem! The urologist told me that he could feel both testicles up there but when he tried to pull them down with his hand, they wouldn't come. He said that was an indication that they would not come down on their own and he needed the surgery. Other kids those little babies go up and hid the minute the diaper is off.....so the doctors know if they can pull them back down with their hands it's OK. The surgery itself was fine. I cried for 3 hours.......but it was not difficult in and of itself. Both testicles were brought down successfully. The urologist did say that his vas deferens tube was very short and the doc thought he *might* not be able to have kids some day. That still looms out there for my son. I asked the urologist at the time if it were possible my husband (at the time) could have a short tube and even HIS father. The urologist said it was possible and no one would have discovered Adam's was short except for the fact they were " in " there operating. So it is possible it is hereditary in which case I'm not concerned.....I have 2 kids with Adam's father (within the first month of trying both times) and my former father in law had made 7 babies (although my mother in law miscarried one). However, it was AFTER the surgery I learned a few things. It was a day surgery so we took him home once he recovered in the recovery room. He had some extra bleeding after the surgery and there was some tense moments that they might have to go back in, but eventually it stopped. Going home was awful! Adam was in a fisher price infant car seat and the buckle did up right between his legs. He couldn't handle the pain. I couldn't even carry him for 4 or 5 days!! The pain was so bad he just cried in agony. But having to force that buckle to lie right on his privates...oh it was a long ride home!!! Ask the doctor what to do if you have that type of car seat. Maybe they can give extra gauze or packing of some kind to lesson the feeling. I was also given liquid codeine for him. When we got him in the house the first thing I did was put a nice soft blanket on the living room floor and got him right out of that car seat. I had no idea that to even slightly move him would cause so much pain. It ended up he lied on that floor and didn't move from that spot for 4 days. I slept on the floor with him every night......there was no way I wanted to move him and cause any pain. Changing diapers?? Oh even urinating caused pain. I put some padding under him and had him without a diaper on a much as I could. The codeine constipated him badly.....which didn't help. So you might ask for something to help with that too. Whenever Adam is in pain (and looking back now this happened when he was 1 day old and had a circumsion) he does not eat for days. I had actually successfully breast fed him the night before but then he had the " cut " and he wouldn't eat. So the nurses figured he wouldn't latch on due to weak muscles and he became a bottle fed baby. NOW I know that is the way he is. He just refuses to eat when in pain. So he didn't eat at all for a number of days. I got some bottles into him while still lying on the floor (used pillows to prop him up). But he was on baby food by then and didn't want it. Of course NOT KNOWING he had any growth disorder or hypo-g or anything else, the docs said it was to be expected that he wouldn't eat. So I guess the big things are to be prepared for the after part. The codeine really helped. Anything else let me know. Debby urologist > > > > > > > > > > Hello to All! > > > > has his first urology appointment on Friday. He > has, > > as Dr H > > > put it, hypospadius with a twist. I saw that others were asking > > questions > > > pertaining to first appointments, and thought i would post along > > those > > > lines. Are there any questions that should be asked, or info that > > we should > > > give the urologist at a " first " visit? What should we expect him > > to do? At > > > what age is surgery for hypospadius usually done? is very > > small, > > > even for an RSS child, and so is his " equipment " , will this cause > > problems, > > > or should surgery be held off until either he or his " equipment " > > is larger? > > > > Any info at all would be greatly appreciated! Thanks for > any > > help you > > > all can give! > > > > Pat (g-ma to , RSS, 15 months, 12# 7oz, 26 " , GT) > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 18, 2003 Report Share Posted March 18, 2003 Hi Cindy Adam's surgery was more successful than Alison's (thank goodness). At birth the docs could see/tell that both his testicles were still " up there " . They monitored it for a year then sent us to a urologist. The urologist said that they like to have the surgery between 12-18 months. Adam had his at 18 months because the doctor wanted as much weight on him as possible without missing the time line. At that time no one had even suggested he had a growth problem! The urologist told me that he could feel both testicles up there but when he tried to pull them down with his hand, they wouldn't come. He said that was an indication that they would not come down on their own and he needed the surgery. Other kids those little babies go up and hid the minute the diaper is off.....so the doctors know if they can pull them back down with their hands it's OK. The surgery itself was fine. I cried for 3 hours.......but it was not difficult in and of itself. Both testicles were brought down successfully. The urologist did say that his vas deferens tube was very short and the doc thought he *might* not be able to have kids some day. That still looms out there for my son. I asked the urologist at the time if it were possible my husband (at the time) could have a short tube and even HIS father. The urologist said it was possible and no one would have discovered Adam's was short except for the fact they were " in " there operating. So it is possible it is hereditary in which case I'm not concerned.....I have 2 kids with Adam's father (within the first month of trying both times) and my former father in law had made 7 babies (although my mother in law miscarried one). However, it was AFTER the surgery I learned a few things. It was a day surgery so we took him home once he recovered in the recovery room. He had some extra bleeding after the surgery and there was some tense moments that they might have to go back in, but eventually it stopped. Going home was awful! Adam was in a fisher price infant car seat and the buckle did up right between his legs. He couldn't handle the pain. I couldn't even carry him for 4 or 5 days!! The pain was so bad he just cried in agony. But having to force that buckle to lie right on his privates...oh it was a long ride home!!! Ask the doctor what to do if you have that type of car seat. Maybe they can give extra gauze or packing of some kind to lesson the feeling. I was also given liquid codeine for him. When we got him in the house the first thing I did was put a nice soft blanket on the living room floor and got him right out of that car seat. I had no idea that to even slightly move him would cause so much pain. It ended up he lied on that floor and didn't move from that spot for 4 days. I slept on the floor with him every night......there was no way I wanted to move him and cause any pain. Changing diapers?? Oh even urinating caused pain. I put some padding under him and had him without a diaper on a much as I could. The codeine constipated him badly.....which didn't help. So you might ask for something to help with that too. Whenever Adam is in pain (and looking back now this happened when he was 1 day old and had a circumsion) he does not eat for days. I had actually successfully breast fed him the night before but then he had the " cut " and he wouldn't eat. So the nurses figured he wouldn't latch on due to weak muscles and he became a bottle fed baby. NOW I know that is the way he is. He just refuses to eat when in pain. So he didn't eat at all for a number of days. I got some bottles into him while still lying on the floor (used pillows to prop him up). But he was on baby food by then and didn't want it. Of course NOT KNOWING he had any growth disorder or hypo-g or anything else, the docs said it was to be expected that he wouldn't eat. So I guess the big things are to be prepared for the after part. The codeine really helped. Anything else let me know. Debby urologist > > > > > > > > > > Hello to All! > > > > has his first urology appointment on Friday. He > has, > > as Dr H > > > put it, hypospadius with a twist. I saw that others were asking > > questions > > > pertaining to first appointments, and thought i would post along > > those > > > lines. Are there any questions that should be asked, or info that > > we should > > > give the urologist at a " first " visit? What should we expect him > > to do? At > > > what age is surgery for hypospadius usually done? is very > > small, > > > even for an RSS child, and so is his " equipment " , will this cause > > problems, > > > or should surgery be held off until either he or his " equipment " > > is larger? > > > > Any info at all would be greatly appreciated! Thanks for > any > > help you > > > all can give! > > > > Pat (g-ma to , RSS, 15 months, 12# 7oz, 26 " , GT) > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 18, 2003 Report Share Posted March 18, 2003 Debby and Alison, Thanks for the info. The reason we've waited so long is because his urologist thought they would come down on their own once n got bigger (which isn't happening either, he's 2.8 years and 16 lbs.) and also he has a more serious complication that started last July after his second surgery. He got an infection of the epididymous, the area surrounding the testicle, from having the catheter in. Having g-tube surgery in Sept. made the infection flare up again and it won't go away! So he'd been on antibiotics since last July. Anyway, we've been waiting to see if this infection will go away, and if not, when he takes down the testicles he might do a partial vasectomy on the side that's infected to prevent it from happening again. He probably has a lot of damage to that testicle now, so I don't have much hope about his fertility. I'm really not ready for another surgery. He's had 3 already. By the way, this epididymous infection is extremely rare, especially in kids, so don't worry Pat. Cindy Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.