My Son Needs Surgery

[MinnieMouse]

I posted back in December after my son's birth. He was born w/ chordee and it was recommended we see a urologist. Since it wasn't a pressing issue we looked around a bit and finally got in to see one at CHOP (in Philly) yesterday.

I did a bunch of research into chordee and found that it often happens in tandem w/ hypospadius. My dh was born w/ this so Ben is a bit more at risk of having it as well.

We first saw a CNP. She was really very nice, asked a few questions and gave Ben a once over. She suggested to us that if he needed surgery to go to one of the outpatient sites (same people, just a different site) since they run more on time. I talked to her about the exam and retraction and she was adament that not only do they vehemently advise not to circ but they also don't retract at all. Told us a story about two brothers (3+5) that had come in because their ped wanted the mom to retract them.

Then we saw the dr. He was nice as well and very patient w/ me and my million questions. He said that since Ben's penis was curved more than 30 degrees he would need surgery. He also said that Ben has VERY little skin on the underside (ventral) and that in order to fix it he would need to use a good amount of his foreskin from the top. AND that he didn't think that Ben has hypospadius but he won't be sure until they do the surgery.

The dr pulled up a PowerPoint presentation on the computer in the exam room and showed us exactly how the surgery would be performed. Both drawings and photos. He gave me a website to look up more info about it and his card that has his work and HOME info on it!

We had a pretty long convo about the decisions the dr would face during the surgery. If he should preserve any remaining foreskin no matter what or if he should use his judgement to determine if it was worth saving anything. There are some serious risks of adhesions and other painful complications.

The dr also told us that he would prefer to do the surgery at CHOP and not one of the satellite offices since he had more resources and time at the Philly site... seems Ben's issues are more complicated than most.

Thank goodness we never circ'd Ben...otherwise they wouldn't have much to fix the problem with!

I was really great through the convo w/ the dr. Then he left and we had a bunch of stuff to go over w/ the CNP. I think I cried three or four times...she kept handing me paper towels to blow my nose.

I have to call the scheduler on Monday to set everything up and ask all the important nursing and anesthesia questions. Does anyone have all those rules handy?? I want to know the scoop BEFORE I get on the phone w/ her.

Does anyone have any insight on the pros/cons of the dr trying to preserve even a tiny bit of foreskin for Ben?? I'm concerned about the complications and what they would entail. The dr seemed to be on board w/ whatever we decided. We left it at preferring to keep as much as possible but leaving it up to him if he felt it would be worth it...balancing the possible complications w/ how much was left, etc.

I'm petrified of my little baby going under anesthesia, worried about the surgery and profoundly sad that he may end up being circ'd after all.

[coloradoalice]

No advice, just hugs. I'm so sorry and I hope all turns out well.

[paminmi]

Your doctor sounds nice beyond belief but I am always a skeptic, can't help it, my background has sealed my fate, so please forgive my questions. Can you tell me if the doctor said what was the big rush? I'm not familiar with the treatment for chordee but logically, I don't get why you can't wait until he's a little older and his penis is bigger. It concerns me that they want to cut on such a small penis...

I'm just wondering if you even need to be worrying about this at this stage of the game, kwim?

Does the chordee affect his urethra or process of urination or is it just tethered?

One other thing, I know of a very pro-intact, educated pediatrician who may be able to give you information regarding sparing your son from circumcision. If you are interested in contacting him, send me a PM.

Thanks~

[MinnieMouse]

Originally Posted by paminmi

Your doctor sounds nice beyond belief but I am always a skeptic, can't help it, my background has sealed my fate, so please forgive my questions. Can you tell me if the doctor said what was the big rush? I'm not familiar with the treatment for chordee but logically, I don't get why you can't wait until he's a little older and his penis is bigger. It concerns me that they want to cut on such a small penis...

I'm just wondering if you even need to be worrying about this at this stage of the game, kwim?

Does the chordee affect his urethra or process of urination or is it just tethered?

One other thing, I know of a very pro-intact, educated pediatrician who may be able to give you information regarding sparing your son from circumcision. If you are interested in contacting him, send me a PM.

Thanks~

Ben is 4mo now and they said that by the time he is fit into the schedule that he would be around 6mo or so.

That is a good question about why now... I am going to put together a list of questions and email the dr. With all the info rushing past me I never thought about that!

The chordee basically is just a curvature of the penis. Approximately the top third of it is curved downwards... I would say it approaches 40 degrees or so? I first thought chordee was more similar to short frenulum issues...but it's the opposite. With a frenulum there is generally too much tissue and it needs to be cut... w/ Ben's chordee he doesn't have enough tissue causing the skin on the bottom to pull the tip over. The surgery will pull skin from the top down, allowing the curve to be pulled back to straight.

The dr seemed VERY up to date w/ info. Told us all about a satellite surgery he had done the previous week w/ experts from France and Italy consulting. They specifically discussed the pros/cons of retaining a portion of the foreskin after similar surgeries and both European drs said that although they used to ALWAYS save as much as possible they no longer do so due to the complications.

Thanks for your questions... they were very helpful and are allowing me to process all this data better!

I'm pming you for the drs info...thanks!

[klugarsh_nifkin]

I'm so sorry that your family is having to face this!

Like a previous poster, I have a just wondering question. Is this lack of tissue something that could be repaired through skin expansion techniques? Perhaps like foreskin restoration, enough skin can be grown to eliminate the tethering -- especially if there aren't any internal issues with the urethra. Maybe this expansion could be done a little later in life without the need for surgery now or any removal of the foreskin at all.

I was just thinking that if the surgery ended up necessitating a circumcision and then your son chose to restore, why not just skip the cutting and start right with the stretching?

[pdx.mothernurture]

Is it possible to graft skin from elsewhere, without using the foreskin? Would it be possible to fix it when he's a teen or adult, and could do some stretching of the skin he has to create some 'extra' for the surgery? These are just some things I thought of while reading the thread. I wish you, your son, and your family the best. (((Hugs)))

Jen

[baybee]

Did we ever send the info on your son's condition to D. O. C.?

If it's all right with you, I'd like to get them to give their opinion
on your two posts above. I'll p.m. you with the comments when
they come in and then, you can choose whether to put them on
the main list or not. Is that okay with you?

I, too, am so sorry you are going through this. It's horrible to
be facing surgery with such a little one.
Baybee

[MinnieMouse]

Originally Posted by baybee

Did we ever send the info on your son's condition to D. O. C.?

If it's all right with you, I'd like to get them to give their opinion
on your two posts above. I'll p.m. you with the comments when
they come in and then, you can choose whether to put them on
the main list or not. Is that okay with you?

I, too, am so sorry you are going through this. It's horrible to
be facing surgery with such a little one.
Baybee

I've only had a boy for 4mo and haven't hung out here much before. What is D.O.C.??

I'm okay w/ sharing the info if I can get more opinions!!

[No2Circ]

DOC= Doctors Opposing Circumcision


I'd also email Dr. Paul Fleiss, a respected anti-circ physician in Calif.

[Frankly Speaking]

I'm a little concerned here.

My understanding is that chordee is not caused by a lack of sufficient skin but instead, the tethering tissue in the erectile tissue of the penis. If that's the case, there would be no reason to use any of the skin.

I'm also concerned about the warning against adhesions and if this doctor understands that adhesions are common with the intact penis and that they willl release on their own at the proper time.

I am also concerned with giving him a carte blanc to do what he wants. I fully suspect that your son will come out of the experience with a full circumcision whether it is actually needed or not. Regardless of what you perceived to be their official stance on circumcision, it may not be reality. Children's Hospital of Philadelphia (CHOP) has a very pro-circumcision stance on their website. It has been discussed here before and was the subject of an e-mail campaign to get their information corrected. As well as I can remember, they did nothing to change the information on their site. Even if CHOP has changed their official policy on circumcision, individual doctors have no obligation to follow that policy and this one could be deceiving you into a circumcision. I would definitely get a second opinion and I would also contact Dr. Paul Fleiss. Dr Fleiss has been a practicing pediatrician for more than 40 years and in his own statement, he has said he has never seen a boy that needed a circumcision. I'm quite sure in that time he has seen many with chordee.

I also suspect that once the chordee is released, the underside of the foreskin will stretch naturally and there will be no need for any other intervention. I'm wondering, if your son had been circumcised at birth as is often the case, exactly where would the doctor go to get the donor skin? If it's necessary to use the foreskin, wouldn't it be impossible to repair chordee? Of course not! The foreskin is not needed and circumcised boys can have chordee repaired. I think you have a lot more questions to ask of this doctor to find out what his true intentions are and find out if he just wants all boys to be circumcised.




Frank

[MinnieMouse]

My understanding is that chordee is not caused by a lack of sufficient skin but instead, the tethering tissue in the erectile tissue of the penis. If that's the case, there would be no reason to use any of the skin.

His penis is curved downward ALL the time not just when erect. Basically it's about the top 1/3 of it. When it's erect the bottom 2/3 is straight and the top 1/3 doesn't really change at all...stays curved over just as before.

I'm also concerned about the warning against adhesions and if this doctor understands that adhesions are common with the intact penis and that they willl release on their own at the proper time.

"I" asked about adhesions...if there would be a problem w/ them since they were basically slicing open the entire foreskin, laying it out flat, performing the correction, and if any remained, sewing it back together. What I took away from the conversation is that they didn't release on their own well because of the surgery. I could TOTALLY be misinterpreting. As I said in a previous post. I thought I went in with a good bit of knowledge but at the time I just felt blindsided w/ the info.

I am also concerned with giving him a carte blanc to do what he wants. I fully suspect that your son will come out of the experience with a full circumcision whether it is actually needed or not. Regardless of what you perceived to be their official stance on circumcision, it may not be reality. Children's Hospital of Philadelphia (CHOP) has a very pro-circumcision stance on their website. It has been discussed here before and was the subject of an e-mail campaign to get their information corrected. As well as I can remember, they did nothing to change the information on their site. Even if CHOP has changed their official policy on circumcision, individual doctors have no obligation to follow that policy and this one could be deceiving you into a circumcision.

The dr told us that he would do whatever we wanted. Said if we wanted to save the foreskin no matter what, he would do so. Even went as far as to comment that it would be a "challenge" for him to figure the best way to save the most foreskin (not said in a flippant way at all but more like an intriguing problem). I felt a bit put on the spot so I came up w/ the strategy that we would prefer to keep as much foreskin as possible but if he felt that it wasn't worth it. If after researching this more my dh and I decide differently...I don't think there would be a problem w/ changing our instructions w/ the dr.

I remember reading all the info about CHOP when doing my research and I went into the appt like the momma bear. I quizzed the CNP at length before she even touched Benny. She was immediate in her response that they don't "believe" in circ'ing anymore. Specifically said "you know it's no longer recommended?" at one point. After I asked about retraction, she went on to tell us about the boys and their ped who wanted to retract them. She started talking about how it was wrong to do so, etc. Totally gave ALL the correct answers to my surprise.

The dr wasn't as direct w/ his views, but he also said all the right things to us. In fact assumed that we would want to preserve as much foreskin as possible.

We specifically picked this dr to see because a friend of mine took her son to see him for chordee as well. In their case they found that the curvature wasn't severe at all and no surgery was needed. So I felt somewhat comfortable that he wouldn't say that it would be needed just to circ my son.

I would definitely get a second opinion and I would also contact Dr. Paul Fleiss. Dr Fleiss has been a practicing pediatrician for more than 40 years and in his own statement, he has said he has never seen a boy that needed a circumcision. I'm quite sure in that time he has seen many with chordee.

I don't know where I could find another dr. CHOP really has the market cornered on pediatric specialists in the area. Unless I went down to EI Dupont or up to NYC??

Does Dr. Fleiss welcome random emails from freaked out parents?? If so I'll try to write something up and contact him.

I also suspect that once the chordee is released, the underside of the foreskin will stretch naturally and there will be no need for any other intervention. I'm wondering, if your son had been circumcised at birth as is often the case, exactly where would the doctor go to get the donor skin? If it's necessary to use the foreskin, wouldn't it be impossible to repair chordee? Of course not! The foreskin is not needed and circumcised boys can have chordee repaired. I think you have a lot more questions to ask of this doctor to find out what his true intentions are and find out if he just wants all boys to be circumcised.

Well, I can tell you that my dh was circ'ed at birth and had hypospadius. His recollections are kind of fuzzy (and his mom is totally unreliable when it comes to medical issues)...but he knows he had more than one operation to "fix" it when younger and none of them "took." So I really don't know how it would or could have been corrected in that instance.

Thank you Frank, you have given me a good deal to think about. I honestly wasn't thinking of a second opinion. I'll start asking around for docs at Dupont (it's in Delaware) and possibly up in the NYC area.

[A&A]

Originally Posted by MinnieMouse

Does Dr. Fleiss welcome random emails from freaked out parents?? If so I'll try to write something up and contact him.

Yes! You may also want to contact Marilyn Milos of www.nocirc.org (She's a nurse.)

[Frankly Speaking]

Originally Posted by MinnieMouse

His penis is curved downward ALL the time not just when erect. Basically it's about the top 1/3 of it. When it's erect the bottom 2/3 is straight and the top 1/3 doesn't really change at all...stays curved over just as before.

Exactly, this shows that it is more than "just skin deep" and that just releasing the skin will not resolve the problem. It's structural.

"I" asked about adhesions...if there would be a problem w/ them since they were basically slicing open the entire foreskin, laying it out flat, performing the correction, and if any remained, sewing it back together. What I took away from the conversation is that they didn't release on their own well because of the surgery. I could TOTALLY be misinterpreting. As I said in a previous post. I thought I went in with a good bit of knowledge but at the time I just felt blindsided w/ the info.

There could be some misinformation on the doctor's part here. Many don't realize that there are normal adhesions and that after separation, those adhesions will reform in the effort of the body to repair itself to as close to the pre-existing condition as possible. They are confusing these normal adhesions with surgical adhesions. The application of an appropriate barrier cream post surgery should take care of surgical adhesions until your son's body can produce a sufficient layer of smegma as a barrier.

The dr told us that he would do whatever we wanted. Said if we wanted to save the foreskin no matter what, he would do so. Even went as far as to comment that it would be a "challenge" for him to figure the best way to save the most foreskin (not said in a flippant way at all but more like an intriguing problem).

Yes, going ahead with a circumcision is the down and dirty way and a good way to get him to the golf course quickly. OK, I'll admit that's a little over the top but essentially, the shaft skin will be split open for the surgery but in closing, it is simply sutured back together. If the foreskin is involved, he will have to suture the inner layer and the outer layer separately but that is not a major impediment for a competent surgeon.

I felt a bit put on the spot so I came up w/ the strategy that we would prefer to keep as much foreskin as possible but if he felt that it wasn't worth it. If after researching this more my dh and I decide differently...I don't think there would be a problem w/ changing our instructions w/ the dr.

That's exactly why you have a consultation well before the surgery, to give you time to consider all of the implications and consequences and to also get a second opinion.

I remember reading all the info about CHOP when doing my research and I went into the appt like the momma bear. I quizzed the CNP at length before she even touched Benny. She was immediate in her response that they don't "believe" in circ'ing anymore. Specifically said "you know it's no longer recommended?" at one point. After I asked about retraction, she went on to tell us about the boys and their ped who wanted to retract them. She started talking about how it was wrong to do so, etc. Totally gave ALL the correct answers to my surprise.

That's great! Maybe our letters do some good after all. But, you can not assume that suddenly they are totally educated on the issue. In this issue probably more than any other in medicine, the medical consumer has to be as well or better educated than the caregivers. There is just too much misinformation and myth endemic in the medical profession about the foreskin. They will study intensively about chordee but will spend little time on the different aspects of the foreskin and the most conservative treatment. They most likely will give your son's foreskin less respect and value than it should get.

I don't know where I could find another dr. CHOP really has the market cornered on pediatric specialists in the area. Unless I went down to EI Dupont or up to NYC??

You can contact Marilyn Milos at NOCIRC. She even takes phone calls (But she will also talk your ear off) and is a very sweet lady. You can also contact Doctors Opposing Circumcision and Attorneys for the Rights of the Child and Attorney David Llewellyn. (MDC screen name: Dave2GA) Any of them may be able to be able to point you to a doctor in your area that is known to be knowledgeable in foreskin issues.

Does Dr. Fleiss welcome random emails from freaked out parents?? If so I'll try to write something up and contact him.

Dr Fleiss is quite amazing in that he will even take and return phone calls to help parents. I know several that were quite amazed when they were asked to leave a message and some hours later got a personal call from Dr. Fleiss! He is quite happy to share his time if it means a boy will get the best treatment possible. I'm sure he would welcome e-mails as well.

Thank you Frank, you have given me a good deal to think about. I honestly wasn't thinking of a second opinion. I'll start asking around for docs at Dupont (it's in Delaware) and possibly up in the NYC area.

Getting a second opinion is just being a good consumer. Would you buy the first car or refrigerator you looked at? If you were getting your home remodeled, would you hire the first architect, interior designer or contractor you found? Of course not! Just like those trades, in the medical industry, you will find all levels of competence and means of doing things and they are not always right. I once owned a company that made custom architectural specialties. We would often get quite detailed drawings from architects about a project. Sometimes they would work and sometimes they would be impossible to build. I would ask if that's the way they wanted it built or if that was what they wanted it to look like? I would get this funny puzzled look and they would ask "Why?" I would explain to them how their drawings would be difficult to build or wouldn't perform as they wanted it to and that it would be very expensive to construct it as drawn. Suddenly, they realized that they were design professionals and that I was the custom fabrication professional and in essence, they were getting the second opinion for their client. I never had one that was disappointed with my advice. I did have one that went against my advice and went with another supplier and was very ashamed to admit it when he came back. However, he came back because he figured out he could trust me to give him the information he really didn't want to hear.

Not every surgeon is going to have the same answer for you and there are "different ways to skin a cat." (Sorry to the animal rights crowd) You need as many different options as possible to make a choice. This is not like buying a vacuum cleaner where if you're not satisfied, you can toss it and buy another that performs as expected. This is a one shot deal and it is absolutely imperative that you get it right the first time. There is no rush and no limit on the time window to get it done. It could be done as a teenager, so take as much time as you need to become totally informed and educated before making the ultimate decision. You will thank your self later!




Frank

[Marilyn Milos, RN]

A second opinion

Greetings,

I thought you might like to speak with a couple of our pediatricians before subjecting your baby to surgery.

Robert Van Howe, MD, was a consultant to the American Academy of Pediatrics 1999 Task Force Committee on Circumcision. He's done extensive research and has written many articles on the subject. His number is 906-250-4317.

Paul Fleiss, MD, is the author of two excellent Mothering articles and, with Frederick Hodges, What Your Doctor May Not Tell You About Circumcision. His number is 323-664-1977.

Please tell them I sent you.

Good luck. I'm sure this is not easy for you...

Best wishes,

Marilyn

Marilyn Fayre Milos, RN, Executive Director
National Organization of Circumcision Information Resource Centers

[A&A]

Marilyn we love you!

[baybee]

Thanks for those contacts, Marilyn, and this is what I received from
Doctors Opposing Circumcision:

<<It appears that this infant was born with a congenital abnormal condition.
He has NOT been circumcised so no blame can be laid on the medical
profession.

The exact nature of the child's condition seems a bit unclear. The doctor
says he may not have hypospadius but he is not sure. That must mean that the
child has a non-retractile foreskin. If the child was born with only a flap
of skin on the top as is sometimes the case in hypospadius, then the
foreskin would be retractable and the existence of an abnormally placed
urethral opening self-evident.

There does not appear to be any urgent reason to operate immediately. In
that case, it makes sense to me to delay any operation until the child is
older, stronger, larger, and better able to tolerate anesthesia. Also the
condition may ease and no operation necessary.


The traditional American technique of hypospadias repair consumes the
foreskin in the repair. But European doctors have devised techniques that
preserve the foreskin. If hypospadias repair is necessary, then it makes
sense to reconstruct the foreskin as modern European technique makes
possible. The Circumcision Reference Library has some limited information on
this. Go here:

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

and spool down to the bottom of the page.

It appears that the doctor has been learning European technique. This speaks
well for him.

George>>

[MistyMM]

my own personal non medical opinion is that if it is not keeping the child from urinating, not causing the child pain, then if he were my child I would leave it be until he is an adult and needs it to not be curved for obvious reasons

Misty

[baybee]

I received an email from Doctors Opposing Circumcision which has a pdf attachment of the AAP policy regarding elective surgery on male genitalia.
I'd be glad to forward the email to you if you p.m. me and give me your email address. It might be handy when talking to physicians to have this in your possession.
Baybee

[paminmi]

Christine, if you are around can you give us an update on how things are going with Ben?

Thanks!

[Islay]

A quite remarkable thread! And what a feather in Mothering's cap that such luminaries as Dr Paul Fliess and Marilyn Milos RN are happy to associate with this site!

I would like to think that one day the little boy we all take such concern for will understand that because of his mother's love and Mothering's reputation, he was supported by so many who cared.

Christopher