If there were absolutely NO risk to genital surgery, then by all accounts it would be a win-win situation for everyone....patient, parent, doctor. The problem comes because there IS risk.
I don't think there is any dispute in that. I guess it really comes down to how you define risk. They didn't start doing surgery for the most part until they learned how to anethetize babies without killing them so in that sense, yes, there is less risk. As far as risk to sensation, it will be there until they can actually restore nerve bundles to the original state. Cutting causes scar tissue and so in one way or another, you are going to have loss and I feel that any loss or potential of loss is a risk. Since I'm not sure what you qualify as huge risk in the past, can you expound on it some?
At the same time, I don't think that means we necessarily have to go back to square one. With a basic understanding of human anatomy and physiology, it may be possible to make some reasonable assumptions.
Again, I am not sure what you mean by 'square one'. However, I think assumptions are a bad thing to make when it comes down to what is essentially cosmetic surgery. We aren't talking life saving surgery. Make all the assumptions you want on my heart in order to save my life, but please don't when it comes to cosmetic surgery that someone can have later when they can participate in the decision without any great differences in ultimate outcome and possibly even better outcome because they will be involved with the process, and especially healing and future maintainance.
But, if there really ARE ways to save the nerve bundles, blood supply, etc. then I think we should also be open minded enough to listen. Granted, there will always be some loss of sensation with any surgery, but what exactly are we talking about? Losing 5% sensation or 95%? It's a big difference, and yes, I believe the answer matters.
Agreed on the loss aspect, but that's really the problem. There is no way to deem genital surgery as success without feedback from the person having it done. That evidence simply doesn't exist and cannot until the person operated on becomes sexually active. Even when the person reaches adulthood, it may still be years as there are lots of studies indicating delayed intimacy for women with CAH. This is likely to be a problem for the foreseeable future because every few years, someone comes up with something they claim is 'better' and when it comes time to actually check the results, they (surgery proponents) scream that it can't be used reliability because that technique is no longer in use. Again, it isn't like measuring if necessary heart surgery was a success because failure means the patient is dead and success means they aren't. That's easy to measure and is reliable.
I'm also not so sure that most surgery is completely cosmetic. Anatomically, the clitoris is connected to the vagina, which is normally completely separate from the urinary tract. In many CAH girls, the vagina and urethra end up connecting internally and forming one structure called an urogenital sinus. No, I don't understand all the problems that can occur when you have an urogenital sinus, but I can imagine what some of them might be. I.e. normally, blood and urine come down separate channels....it's not hard to imagine that there may be serious functional problems if they have to share the same space. Does that mean then that surgery is inevitable, and the question just becomes....is it better in infancy or in adolescence?
We need to seperate the difference between what is cosmetic and what is necessary. No one to the best of my knowledge has decried surgery to reduce or alleviate urinary tract infections. However, UM surgery is different than clitoral reduction or whatever the latest, greatest word for it is now. To the best of my knowledge, in CAH girls, it is rare (but not unheard of) for the urethra to exit in the clitoris, rather it is usually as you describe. Clitoral surgery is usually independent, however it is often sold to parents as one-step procedure, "Since we are fixing that, let's do the clit at the same time..." Even with vaginoplasty, as it has been explained to me, the urinary issues can be done seperate.
This isn't to say vaginoplasty is cosmetic in girls with CAH, because it is necessary at some point. But consider the work of Minto and Creighton; they showed an 89% (87%?) redo rate for vaginoplasties done during infancy and sold to parents as one-step procedures. Can you imagine any other surgery specialty having an 89% failure rate? Would you go to see that doctor? BTW...a good question to ask a doctor who does surgery is how many of his patients need more surgery and how many times does it take him to get it 'right'? Don't forget to ask him how it is going to stay open, too. Many docs will tell you no dilation is necessary but how many teens have we seen wander through unable to insert even a small tampon? Alot...and it tells you something (or at least it does for me). Is it better to wait until the girl can work on keeping it open anyways from the start, is it better to have a girl who has a teen can't even insert a tampon and probably needs it anyways even after her parents were told no dilation was necessary, or is it better to have the vaginal surgery in childhood, ask the parents to dialate the baby and young child (because the scar tissue keeps forming for years) and hope she doesn't remember anyone sticking things inside of her? There's also the issue of hormones. At puberty, estrogens make the tissue around the vagina much softer and pliable, so it's easier to keep the scar tissue soft. That's one of the reasons teens with MRKH or even AIS can use dialators to stretch the vagina if they want an opening or have one they deem inadequate.
Another issue on waiting on vaginal surgery is you also minimize the frequent invasive genital checks to check handiwork. If surgery is done in childhood, it does need to be followed up on---there's no getting around it. If no surgery is done, there really isn't any reason for frequent checks because the parents can watch for hair and stuff. However--most docs, CAH or not, like to peek at least once in awhile. The main reason for it is to look for signs of sexual abuse.
Betsy
