Dr. David Mooney - Principles of Pilonidal Care

Good morning, everyone. It's my pleasure today to introduce Dr. Mooney. He obtained his medical degree from St. Louis University School of Medicine and completed a general surgery called Residency at the University of Vermont, where he completed research fellowship in surgical immunology. He completed a pediatric surgery fellowship at Children's Mercy Hospital in Kansas City, Missouri and attained his master's in public health from the Harvard School of Public Health in 2006. He created the pediatric trauma program at Children's Hospital at Dartmouth and is currently the director of the trauma center here at Boston Children's Hospital. He has been active on a variety of national committees, including the American College of Surgeons, AFSA, East. He was also the founding president of the pediatric trauma society. He's served as a consultant and in various leadership positions for a variety of organizations, including the American College of Emergency Physicians, the maternal child health bureau's emergency medical services for children in the Massachusetts State Trauma Committee. He's conducted over 100 reviews of pediatric trauma centers in the United States and was instrumental in the development of pediatric trauma care systems in New Hampshire, New Mexico, and Tuscan, Italy. He's a reviewer for 16 journals, including New English Journal of Medicine and Journal of Trauma. He has published over 100 peer reviewed articles, 12 book chapters, and has given over 300 lectures in a variety of settings. He has mentored over 35 surgical residents, many of whom have gone on to distinguished careers. He's a retired major in the US Army Medical Reserve and a former member of the National Disaster Medical Team. He also remains active in global surgical efforts and played a pivotal role here in Boston during the 2013 Boston Marathon bombing. His other clinical efforts include the investigation and amelioration of chronic abdominal wall pain, and as well as what we're going to hear about today, the treatment of island idol disease. Thank you so much. Thanks, Patrick. It's a must be fitting toy the end of your career to bring up the rear with another orphan condition. I'd like to thank you guys for having me speak today. When I talk about something that flags, I'd say probably every general surgeon because a lot of these kids, these adolescents, are cared for by adult surgeons. We see them too. Surgeons routinely hate it. We don't pay a lot of attention to it, but then we're faced with a patient with a figure out what to do. Okay. Like. Okay. So the ship. All right, John. Okay. Oh, it's just delayed. Sorry. Pretty easily. Okay. So the flow that's actually what I wanted to talk about is what is a pile of animal disease because there's a lot of false information out there and unfortunately coming from some major medical organizations. Talk about some of the historic treatments, our clinic out in Wal-Tham and some of our results. And we typically reserve like thanks for the end, but I like to lead with the thanks because we've seen as of a couple days ago over 1400 patients. So we're seeing 27 new kids a month. So we'll be at 1500 kids really and that was December by sort of February, end of January. And so if it weren't for Mark Peter and Kathy Chen stepping up and seeing these patients, we wouldn't be at that volume. Susan Zatto is a former flight attendant who is the cheerleader of the clinic and the social chairman of the whole clinic out in Wal-Tham. I'm very paying the CA here is actually basically runs the clinic out in Wal-Tham. You guys may or may or may not remember Huggard Adele Shaw to help set up the clinic and the clinic processes in Nikki Cheku, sadly moved back home to Pittsburgh. We currently have three PAs, Kathy Renzi John, John D. and Tessa, who helped staff the clinic. Samantha and Vanessa are nurses that help out Susan and her all is the new AIA for the program in Joshua was instrumental in keeping things going during a gap. And then we have a research team and I took a really funny, awful Zoom picture of them last week, but I promise I wouldn't use it. We meet everyone's a morning at 8 o'clock and talk about research topics. So I haven't seen all 1400, but I've probably seen at least 1,000 of those kids. And just some observations about pylon animal disease. Just in terms of EDL, we go through some of these decades to just stay in this slide, but pylon animal disease is basically plugged up hair follicles in an unfortunate location. It's the same thing as a pimple on the face, but it just happens to be in this one stratus skin in the butt crack. There's actually no such thing as a pylon animal cyst. In fact, that's a nonsensical statement that a pylon animal cyst is an nonsensical term. It's like a pick line, a percutaneous insertic central catheter line. So because it's catheter, because a cyst, a nitrous is a focal point for a process. And so you've got a cyst, a pylon, a hair cystist. And there's no associated with the deep sacral nipples that we see in babies. It happens in puberty, and well, role feed is in future slides. And tends to run in families, tends to be from Italy, eastward, and the stripe of the Mediterranean is with a higher incidence of pylon animals occur. When you read things, they talk about how it's all guys. It's all basically that guy who must have hacked the computer systems back in the campaign to 400 pound guy in his mouth's basement. But it's 40% women in our population. It's not an infection. There's different versions now. One of the good other slides. So to start with the top. So the male brothers, it must have been nice to be back then when there was so much is undiscovered. 1833 they described something like this, a pylon idol pocket. And someone named Hodg coined the term pylon idol in the late 1800s. And there was the embryologic origin idea that the basis was something you were born with related deep sacral nipples came around to around 1900. But they curiously saw the jeeps seat. So jeeps don't have shocks, and the seats don't have padding. And the soldiers were bumping around these zump paved roads and banging their jeeps against the seat and getting these angry red things on their butcracks. They went into the sick bay. And when they got there, they saw a surgeon standing there. Somebody looked a lot like me. And so because they came to a surgeon, this became a surgical condition. And so we did what we do is we cut it out. And pretty much everybody in this room was trained spyle and otosis to remove it. And then you've got this hole sitting there and what do you do with a hole? And but you make sure you get it all. You can put meffling blue, which is make sure that all of the tracks go all the sinus spot the entire thing excise. Whether you go down the periodicity or not, you know, this we would debate that sort of thing. But now you've got this hole there. And what do you do with a hole? Do you leave it open and pack it or do you close it? And if you close it to sort of the cosmetically nice, you know, right up the buck crack, or do do a flap. And there were different surgeons who become famous for devising a diamond flap or curved flap or different versions of a flap. But we hit that when I was training, we never ever talked about whether you had to cut out the the the assist. And then some people in the 50s realize this was an acquired disease not related to trauma from the Jeep. But that's to me how they send it up in surgery. But if you get folliculitis in other locations like your armpits, that goes into dermatology. It doesn't come to us. That's considered a medical condition. So basically, it's occluded follicles. And this one of the components of follicular occlusion tetrad, there are these four things that are basically it's hormonally mediated glansal activity. And the group from Stanford actually that came and visited us a few years ago and took all of our stuff out to Stanford. They actually just wrote a paper recently where they I think that maybe represented at a p recently where they talked about hormonal changes in the symptomatology of pylonitals in young women. And there's a group of them we've started asking that if you have a group of women too that right before the period their pylonital pain kicks up. And there's something about the hormone receptors in the skin of their other crease. Hydrogenitis is the armpits or the four increases. And there's these terrible things that happen. So this is a hydrodonitis on the top left. We've got around a hundred kids with hydrodonitis. Now this is a pretty advanced. This is this early staging this pouring system. This will be pretty advanced starting. This is a stage three. We see a lot of hydrodonitis with a pylonital. I haven't seen much of these serpentine scalp abscesses. That's one of the components of follicular occlusion tetrad. That acne. And we see a lot of acne pylonital. That's a very common combination or hydrodonitis pylonital. I haven't seen all four. But again, those are the four components and it's just plugged up hair follicles in different body locations. But because of the way things fell, those are cared for by very different people. Also there, if you look at the society of colorectal surgeons, they tell you that what happens is that people with good hair, the hair falls off and it basically penetrates through the skin. It sort of drives itself right through the skin and leads to a pylonital. But that's quite frankly a bunch of baloney. There's been studies done since the 1980s and I'll show some pathology sites in a moment from this guy named Basquem, who is considered the father of pylon out of care in the US, showing that basically the its follicles are getting plugged. That eventually what happens first of all, gets plugged up and it pays off. I'll give you the talk I give the teenagers. So basically when adolescents, their puberty hits two things happen. Number one, the grow body hair. Congratulations. Number two, their hormones go through the roof. Double congratulations. The testosterone level send a peak around 18 to 19 years and the female hormones peak a little bit earlier. What happens is the combination of the hair fall, the hair developing and the hormones raging, plugs up their hair follicles. A plug to pair follicle in the faces is it and sometimes the zik can heal with a little scar called a pock. Well, plug to pair follicles and other locations on the body. You see people in their chest, I think, get them different locations. But if there's this little stripe of skin right up to the crease of the behind, if you get it in that location, Baskam actually did a study where they put a little pressure sensor right on the crease of someone behind. It had them like stand up and sit down. And it turns out when you stand up, you generate tremendous negative pressure because your cheeks drop and it increases the amount of vacuum that pulls things up toward the skin of your behind. And when we walk, whatever's in our buck crease, we'll eventually make it into that little pit and plug it up. That pit now repures internally and you get a little skin line sinus. More stuff gets in and you get a little anitis or a ball or a nest or a little hair ball in a neater skin. And that's basically what a pylon idol is. And so again, anitis is a breeding place where stuff develops as where disease occurs. So for your pylon et al. cyst cysts and they're not lined by pithelial tissue. They're lined by chronic granulation tissue. The same thing as you when you get a scraped the body tries to heal it or as I tell them, it's like that red bump you get around this linter is that same reaction. And half of pylon idols don't have any hair in them. They have a lint from clothing, different debris, whatever's inside the pylon idol. So it's not that hairs are coming out of it or growing into it or drilling the way through the skin. And here's some of the vaskin slides. And this is just like a normal follicle, plugged a follicle and then on the right side, sort of a really plug a follicle filled with a bunch of sebum. And then you actually capture these from those specimens. And this is actually one that had ruptured internally. And it already started to become epithelialized. So this is basically from follicle to sinus. And the more stuff gets in. And there's no sign of any like hairs, you know, stuck up the middle of these, you know, forcing the way through the skin. Well, there are still unnamed anatomic structures left. And actually I've been in communication with the anatomic association to try and see there's no name for this little stripe of skin. We've all seen it. Everybody's rear end has this. So when you go from typical skin to this red stripe, it's different texture. It's a different color. And it's a little it's all shinier than the skin on the sides. And everyone has that unless maybe you've had a, you know, perfect anus and we move that or someone operate on a buck rack and took it out. Those follicles are the ones that cause trouble. If you go a centimeter either side or I've six millimeters either side, you can get all the follicle out as you want and you're not going to get a pile of an idol. There's something about that skin where that's the location. And you know, I've tried actually quite a bit to find the name, some name for this. People talk about the crease and the stuff that I've been creased to direct your whole area, not that stripe of skin. Well, that stripe of skin is important because that's when we do treatments, that's when we go after that stripe. Like we laser that stripe. We don't do the whole body. We just want the follicles in this stripe dead. And that's where we have thousands of pictures of people's of that unnamed anatomic structure. And here's just another graphic. So if you go to like a kids health.com or some place to get like information on, you know, this when your child has something, this is the kind of stuff you find where there's a sinus tract and the thing full of hair and there's your pile of an idol cysts down deep. And this is like a classic picture that people will find. You've got a dimple that leads to the cyst that forms and then somebody has to like take care of that. But like I said, that's that's actually not the not true. And here's just a cartoon with deep sacro dimple that is again not. People have looked at the pathology of pile of an idols and there's no ambologic tissue in the pile of an idols. The deep sacro dimples can cause trouble and that's actually a pretty tough problem. And we sometimes will get those kids because someone, you know, it's in the general body area. Those are tough to treat. But who gets a pile of an idol? Well, it turns out in Turkey, if you want to go to a college or you want to be a teacher in a college, they check your buck crack. They you have to have a physical examination and part of it is looking at your crease in order to get the job or in order to get in the college. And the reason why they do that is because one in 16 people in Turkey has a pile of an idol. And so if you want to do pile of an idol for a living, go to Turkey or Israel or Egypt. That whole eastern stripe of the Mediterranean is like pile of an idol central and the best, you know, it is a great papers of Israel that gave papers of Egypt. But again, it's just super common. If you want to get into the military in the US, they do a physical examination and they check your buck crack because young men tend to get pile an idols. And the idea is they don't want to pay for it, but the care of it. We will sometimes see these people who are heading toward the military and we have to clear them first so they can get into that whatever branch of the service are heading toward. I've hear from Scandinavia, you know, one in 400 is much less common. And if you look in the literature, it says three to four, or even more sometimes, male to female ratio. Our patients are about 60, 40, male to female. And so like about 58, 42. But again, it's not, we don't know why our patients would be any different than anywhere else, but it's not what you, what we see. We do see that the males tend to have worse disease. And whether it's just because they're clueless boys, whether there's something about being a male, but their disease tends to be more moderate and severe than girls. The age of onset in the literature is 21 for males and 19 for females. I know we're at children's facility, but we take patients up to 30 years of age to try and be nice and have them not have to have an operation. But our average age of onset is 14.9 years for girls and 16 for boys. So much younger than what you see in the literature. And that correlates it directly to puberty. Purity hits, fair develops, acne happens, and pylonautos occur. Our youngest patient was nine, and our oldest patient where they've said they had nothing and they got it was 26. Well, a few years ago we basically made up an injury severity or disease, sorry, the disease severity score, but trying to figure out who had what. And again, we're trying right now to validate this. We've taken probably 6 or 8,000 photographs of people with bug cracks. We take a photograph on arrival before we shave them to see how much hair is there. They may take a photograph after we shave them because most people have never seen their bug crack and they don't have an exact idea what's going on. And then as a treatment unfolds, we take a picture every time they come back so we can show them their improvement. And we have like, again, 1,000 pictures in power chart. But we're validating this right now by looking at those pictures. Just make sure that trying correlate these things we made up for severity with other measures. I'll show a couple things later. So this is what we consider mild disease. So this is like, here's that stripe. We've got a couple of pits. There's actually three pits there. This one, I'll walk over to the mic. One down low and there's two above that. And that looks like nothing. It looks like those are maybe a maybe a millimeter and a half around. And it's unimaginable to that one and a half millimeter. If you look, one and a half of the middle layer dots, like bothers somebody. But hairs and lint and other stuff can get in and become amazingly painful. And that can kick off a whole pile of nitols just those three little dots. We know to see people for just like, it's very usually to see someone just because it's holes. Because no one can find that or check their bug crack closely to see that they're coming in for symptoms. Usually a pocket deep to that. Here's moderate disease. A bigger opening in the middle. A little bigger opening up top and then an exit. I call it the exit wound. About 80 to 85% of the time it goes up and then typically off to the side. I have no idea why it goes up. About 10% or so it goes up directly laterally. Around five or between five to 10% it's straight in and it doesn't head anywhere. And I had this six patient yesterday in clinic where it went down for the anus. He had two of top that it went up, which would be expected. But one of them headed right down again towards the anus that we've had. At a 14 or two kids, we've had six patients where that's happened. And that may be a different disease because of it's been very hard to treat the ones that go downward. And then there's severe disease, lots of holes, drainage, pus, pockets. The usual thing people think about is pylon idol. And then the worst ones are the hiss wounds. We've got about 100 kids now with the hiss wounds. We just looked at them. We have a red cap database. We just looked at from start to seeing us to healing of the wound. The average length of time is about a year of just intense wound treatment to try and get that thing to heal. And most of them have received sort of a three to six to more to a year or more treatments before they saw us to try to get different wound claims to try and get the thing to heal. And then this is odd thing. I don't know what the name of this is, but it's not really pylon idol disease, but we see it. It's sort of as you can kind of tell this person has a little bit of a rashi like wet skin. There's some people I don't know if it's really sweaty or what it is, but their skin just like right as you head around the turn in their butt, the skin just like pops open. There's no plug follicle, there's no nothing. It's just this divot line by granulation tissue. We see a fair number of these kids and there's not a lot we can do for that. It's pretty close to the anus, have to operate on. We laser around it to try and get the hair to stop laying in the hole, excuse me. But we just basically tell them that they're going to have to take care of that at home by keeping debris out of it and getting the wound to heal. They do heal, but it's all on them, but that appears to be a different condition that's located in that spot. One other thing that we've learned about pylon idols is not an infection. It's an inflammatory response. The same way is that bump around the slinter. This is one of the other of the way reasons I can say that. This is a patient that actually Brent Wiles saw this kid. We were treating this young man and you can see he's got this sort of hole in the middle, in a modernly hairy guy, a couple holes, but he's got this big pocket with three holes, exit wounds. It was just awful. The worst pylon idol we've ever seen. Great mom, great kid, and they were having them soak and all this stuff, but it just wasn't working. So they were trying to get him to go to immunology and say there's something wrong because you're just not responding. So he finally went and it turned out he had like a simmering leukemia. And so he got treated, treated and worked at a bone marrow transplant. He's got this thing going on and he's going to get a bone marrow transplant. So Brent actually put a vessel loop like in one of the couple of the holes and the kid gets his bone marrow transplant and just if no completely obliterates his immune system, I'm thinking he's going to die a sepsis during this. And he comes back to clinic to see us and that's what he's got. It was all gone. Everything healed when his immune system got wiped out. And kind of the exact opposite of what I thought it was was going to happen. I thought he had some giant necrotizing infection and you know, what to make of it. When the information went away, his disease went away. And there were some dermatologists across the hall for most out in the wall family. When they see a kid with a pylon idol, they inject steroids around it. It settles out on the information. It worked really well for decreasing the pain. And when women have, it's mainly women. We have a few guys with mainly women who have the skin abscesses from it is the inflammatory responses from hydrate anditis. Either in the growing cases or armpits, they inject catalog around them to settle the pain from those and don't treat them with antibiotics. And that also works very well. So again, it appears to be more of an inflammatory process than a big abscess. They can be common-facted, but they're not early on. So the traditional treatments that we've all basically all general surgeons have done. This is actually a picture from a guy, Steven Zimmerman, who's one of the leading flap doctors in the country. And he's marking out this is from a paper that he wrote in 21 and mapping out how he's going to do his vascular flap on his patient. And when I look at that patient's butt grease, he got a few little pits and he's got something to slice the larger up above. But I would say that person is not a candidate for surgery. We publish a paper about these mild disease that can go away with some lasers and a pitpicking. And we would not even recommend, we tell him, you're not a candidate for an operation. But that's his pre-op picture of doing that that you published. It's easy to have good results when you operate on people with mild disease. But the, so that we sector this, and I can talk about open closure flap. But it's a meaningful morbidity. And in an absolute review, they had about 30% major complication rate after resection for pilot nuttles and adolescents. And again, it can be tough to resolve those if they happen. Here's a pretty standard picture of a midline resection. It's a nice beautiful view. You know, we're second making sure you get it all all the way down to the fascia. I've certainly done this operation several times. It's how I was trained to do it, et cetera. And then the question would be, do you put a vac on it or do you put a, you know, dressings on it or close it. And that's always been a standard management. And here's just a version of a flap. And again, it's more of a, like a diamond shaped flap with a drain. And we still routinely, we still routinely see kids come in who've had a midline crease excision or had a flap. And one equivalence to me, this is a, some guy with something on his face, I said, what if that was like flaky light as we wouldn't like remove this guy's, you know, face, we would treat us flaky light as in some way and see if we could resolve it first. Based on our clinics, so basically we started this clinic in 2014. We basically had nothing to offer. Hygiene and, you know, life support. But we started off with two principles. Principal number one was no torture. We've had several dozens of patients who have actually had post traumatic stress disorder from having an I&D of their pocket. And that's why we don't do that. Because it's, it's hard on us because they won't let us near them. They can be two or three visits before they let us even really examine them and shape them and do anything to them because they're so freaked out from having a 90 because the local anesthesia doesn't work very well in an acidic environment. So, rule number one is no torture. We say, we're not going to torture you. Well, first I say is welcome to the clinic that no one wants to come to. Like, you would want to come to a butt clinic and they probably lied to their friends about where they were going. And then no torture bell is no surprise. So we just sort of all these say too much to them. But the flip of it is that we want to make this, this is adolescents is kind of a delicate time in these, you know, snowflakes lives. And we want to turn it from some disruption, whether like, hand sit for three weeks, missing a season of their sport, whatever it is, this like life disruptor into an annoyance. It's a bunch of annoying doctor visits and wall family rather than you know, a boom, a big event. And they can keep doing everything they were doing before. So we started out. We had a session per month. So a session's happening. So we had a happy day a month. And in that whole year, we saw 30 patients and we really probably as good we didn't see more because we really didn't have anything. We didn't have a lazy and pipping. We didn't have anything. We just educated about hygiene and I looked back, I've been looking back to the notes there because they're trying to like catch up with how these people did longer term. And I have notes like, oh yes, he's had like five pits and you know, good luck in life. And the guy would like wonder off with his active disease and 80% of our patients like the last time we saw them they had active disease and we had like nothing that we did for it. Luckily we got a laser on 2016 started doing a pit picking in 2017 and then we have this protocol that we started four years ago. And this is what we this is sort of our routine for last like three, four years and it's pretty straight forward. And so we basically you look at their crease. And if they have pits and no cellitis or rash, the first visit will do a pit picking and then and do the first laser treatments or I'd kill the follicles. If they have an undrained collection it's got to be popped. If it's a bad one, we'll oftentimes send them to a nursing care to get sedation or to an EDV sedation for it. And then they go to the home hygiene. Actually I had a pop on yesterday. I was pretty bummed but I used a J-tip which is fascinating but a J-tip right on the top of it. And the guy had had them popped in the past and he was like he said that was so much better. But be an undrained collection, pop it and then start the routine. From midline wound and again you can read that too. No cellulitis or rash will just start the laser and then if they have cellulitis or rash we just go take a shower. We start them on a home hygiene routine. And then they start that we they come back in six weeks and if they still have pits, wounds or a collections we go back. Otherwise we just continue the hair, lasers in that hair that crease until the hair is gone. And once the hair is gone no pits and the holes, no hair they graduate. It's a challenge to get people to finish off the laser because it's a whole series of visits they got to come back to all of them maybe a month and a half or two months to get a laser. And when they're feeling fine no teenagers are pretty unreliable people. And that's where we lose a lot of kids to follow. So this is data from we just had a just present like 1115 kids that have pit picking. And this is data from our clinic on the severities that we've seen. So about half the kids have mild disease and which is great. At first when we started the clinic we had a lot of kids with dehystances and severe disease but as the clinic has moved along we're getting patients earlier and so we're getting a lot of patients with pits. So about half of patients have mild disease, the moderate severe, as again as you can see it. We've got more hydrodynamic in that now. Again we're we just looked at it about 94 96 hydrodynamic patients and we're at about 85 to 90 dehysticants. Some kids have had five or six operations for their final animal. We have a red cap database where we store all this and you can't read that but it's we've been storing on every patient since I think 2015. They come in they fill a survey before they get to see us and intake survey and then every visit and we fill out a survey when we see them and every visit they fill out a survey we fill out a survey you know what do we do how did it look you know their symptoms the quality of life measures every visit and we've got this data now on over 1300 kids and we've got this they call chat with children so I don't know if you guys are using it or not but we got it through Department of Manus physiology of the Shannon who works here but lives in the mountains in Colorado which sounds like a great kid and the idea is that patients fill this out before they see us well we want them to fill out before they see us but it's all it's electronic surveys so they fill out the survey and we can see it before we see them here's all the survey stuff before we do I check them in the morning before a clinic and we're only running about maybe end of 20% of people fill it out but then we fill our surveys out in this so we just go ahead on this it's actually pretty quick we even did a Facebook webinar Nicky and I which is probably we do same dorky photo everyone uses it I mean so again our three pronged assault so the the the treatment plan is there's this only three things it's really not rocket science and it's really like stupid simple we tell them to take a shower and do something before they go to school because morning times really tight for kids and so do something to the butt crack they can take a washcloth and wash the butt crack with a soapy washcloth they can actually take a shower if they want to take a shower either way if they take a shower we haven't got a handheld shower head and whether in a morning or night shower they're really easy to install like us 25 the 30 dollars is like there's also Amazon Amazon the 25 the 30 out that's your 25 to 30 dollars oh that was 35 and for like really nice handheld shower heads you unscrew the thing you put the new one on and then you've got a handheld shower head for pretty cheap and but these days in the morning do that at night you get home and do all your sports and everything do that before you go to bed so you just minimize the amount of debris available in the butt crack to get into any holes that are there and just that alone really settles things down settles down the symptoms settles down the drainage settles down the smell if there's any odor at all it means not doing this enough the second thing that we do if they have pit picking we do a pit picking we do that with local in the clinic we'll talk about that in a second and then the lasers are prevent future holes so they do the laser to kill those follicles before they turn into a hole in the future and laser for high-dried nitrous adactin and working very well so less than their symptoms and that's it that's that's the whole treatment plan and for pylon idol none of those things really need a surgeon I mean this could easily be done by dermatology the pit picking is a very simple procedure and it's less exciting than you know the times they've taken divots off of me for my Irish guy who lives a son problems so let's talk a little bit about pit picking because most people probably never done a pit picking so bascom came over this in 1980 or he wrote about it in 1980 so over 40 years ago and it's seven local anesthesia in the office a lot of hospitals around the country will do this in the operating room and we've done some in the operating room I've talked about a second but if you go to the operating room to have your butt crack operated on so we had to clinic an operating day in wall fam for like autistic kids or super anxious kids and the the challenge is somebody's all jazzed up they come to the operating room and they go prone they were trying not to intubate them because it's kind of a big deal going prone getting intubated because you have that the head grass and the foam thing and it's a big deal you know the flipping them and everything so they try to not intubate them well if you're all jazzed up we put in local around the wound well once that local starts to work they don't feel anything and all the meds kick in from they got to help relax them they get the shot and then they were having air breathing issues and so they have to like roll them over and intubate them so now anybody who gets this gets intubated they get intubated and they go prone so now you've got general anesthesia deep anesthesia going intubated and you're going prone to get a procedure to avoid this comfort of two two or three or most four shots of local anesthesia and so I really tell people now if you're a autistic sure but I really tell people who are anxious like that's way worse than getting a shot in the clinic and we have J-TIPS which help a ton with people with needle phobias so again we do them locally in anesthesia but a lot of hospitals around the country the children's hospitals will do this like San Diego Chicago brown they do it other general anesthesia which makes that a much bigger deal and but it's we haven't found that to be necessary people run play skip jump do whatever they want for activities there's no activity restrictions after the procedure and if they have an abscess we'll pop it off on the midline we don't make any cuts up the midline but these really nice skin bopsie punches we have one and a half one and a half two millimeter and three millimeter sizes the biggest will go is a three we had it could come up from brown their holes weren't healing they'd done five millimeter punches like left these holes up and the question is whether you close it or don't close it and we've tried not to close the hole but have had a lot of trouble like just debris getting and keeping it open so we've been stitching them for the last few years and so the general idea is you basically just core out the skin so we don't remove all the sinuses we don't put a laser up and burn the surfaces of everything none of that is probably necessary if they have a pocket we drain the pocket but the idea is we just get the what I tell people is the your fingers aren't going to stick together because they're lined by skin but if you say hot off the surface of your skin and stuck them together they actually would heal together well so these pits are lined by skin so all we really do is de-epithealize the pit track and then put a stitch the stuff below the surface sticks together with the whole sideways car and that seals it and that's and that resolves the condition so here's that person with the the silly three pits blown up a little bit and here they are after the pipping so they've got three little scars and so once those holes are closed they don't have a pile of animal disease anymore has gone they can't get stuff inside their body so they can't get a pit and I think it can get an abscess and you know all the rest of it so we laser them we laser that's unnamed stripe to keep them getting once in the future but their disease is over 96% of kids don't take time on all of them or turn anything they just go on with their day full activity we have them keep cleaning advice today as the stage we had the parents take the stitch out the big loop we do vertical matters is a big loop on the left butt cheek and they just cut the loop and they're not slides out we had a kind of a funny kid we last week a week before where they came into the clinic because the parent couldn't get the stitch out the pediatrician couldn't get the stitch out they came into Fagan and John droni looked in the hole he like this fixed visa pull it right out it was someone had cut it it was like sitting there he just lifted it right out it's lit right out the problem that we have is about 80% of them heal about 20% don't have to repeat it because the butt crack is a terrible place to heal much of anything and then there's our laser 120 thousand dollar laser thank you see and that's our second laser we've done so many laser achievements we burned out our first laser and had to get a new one but the laser so most people haven't done anything I've never had any idea what laser was about so it turns out that there's you have to repeat lasers about every month and a half we had issues and wall thing where people weren't coming back and we're we finally hit oh it needs a sweet spot where people are going to be able to come back on time but you hit them as they regrow in order to kill them the best and you have to do that until they're dead and everybody's got different color skin but the every person the planet has different color skin and we have to adjust the laser based on the amount of pigments in your in your hair and the amount of pigment in your skin so if we like for me with my see-through ira skin I can go high energy on the laser because I don't have any pigment you might hear in their body they would be we interesting we have to turn the hair down or the other time the the laser down because the their pigment in the skin absorb the laser and get apart and so we adjust it based on them and we do all kinds of skin scoring and again we just want that straight we don't want to do the whole cheeks because there's a lot of you know guys a lot of body hair and it would look super weird if like you have all this body hair except on your butt you look like this the monkey in the zoo with the big red butt so we just do that stripe and the idea if we just do that stripe here in the side you know covers it and they we tell them no one's going to know in the future you've ever had laser on your butt so you don't have to like you know be against the wall in the shower at school or anything and so we've done a bunch of try to do a bunch of studies about this and so this is actually from it wasn't our first 75 it was like a some mid chunk of patients 75 kids who had laser and we did laser compared to no laser and looked at the resolution of their island auto disease and on a job that they did most of give it when we adjust the first severity of disease the laser really helped with resolve their pilot auto disease and it was actually the most effective for the more severe patients and a lot of those probably the hairs they were just draping into the wound like his hair looks really rough on under electron microscopy and it beats the daylights out of granulation tissue but lasering around the wounds help a ton for these kids and we've also looked at quality of life so one of the I mean this is a with a template quality of life measure and the higher the score the worst the more you're affected by your disease condition and you can see even for mild disease the blue line it's feel like they're pretty like they're given the three pits of mild disease a lot of kids are pretty severely affected by this they're embarrassed you know they might be a smell they don't do one due sports there's a whole host of different things that happens to them but pretty quickly by their second visit the mild disease kids are the quality of life the fact of their disease is way down part of that might just be reassurance of telling them that they're not going to die and it will go away and on the rest of it but even the severe kids pretty quickly by their third visit their scores are pretty low it's certainly compared to when they came in just by like taking your shower closing pits and doing a laser and again nothing dramatic and we've had some other things we with having a nice group of clinical research people has been great but we have like we looked at mild disease in adolescence and found that in a group of like 110 kids not a single one of them need an operation for the pilot out we could just do it right there that was picked up by I have to put that out as something people ought to know Maddie MacArthur just presented at New England surgical this year on our care protocol that we've been comparing pre and post care protocol to show more people are finishing off and doing better I just reported our first 1115 pit pickings at AAP and then 2018 the hugger before she left one in innovation word for the PD surgery nurses as I stated for the pilot mental clinic so how are things right now so we currently have 20 sessions per month so sessions half a day so we're having 10 10 days per month of care and wallfam we've reached 10 to 12 patients per session and so we're hitting around 200 kids a month in patients slots in wallfam and I think we're finally catching up to the demand we don't it used to be two three months delay and people were grumbling about they couldn't get a clinic spot but I think that's probably around the volume there's around seven out of 10,000 people get a pilot idol and with four and a half say five million people in men mass this is what would be a 3,500, 4,000 people obviously there's old people young people but there's probably in New England there may be as many as four or five thousand people per year across New England they get a pilot idol and and we see kids wrote island New Hampshire Vermont main Connecticut all the time people will drive up we see kids in New York City who come up because they can't find somebody to pitpicking New York City but but again so it is a big volume because I think we're probably with 200 a month and seeing about 27 new patients a month I think we're probably hitting a spot for buying bubble C of what that looks like and we have a hydrant and I just clinic with dermatology where they see us and they see germ and so they get their meds adjusted you know they have a lot of topical treatments bleach bass screams everything's germ uses and then we'll do laser on them and I've done seven pitpicking on armpits and girls with hydrant they're all women we have again three guys haven't done them but women with height with axillary hydrant anditis kind of a mixed bag the armpit seems a little different than the groin three of them have worked great one was a total disaster and two were in between currently we have three people who do it and three PAs who rotate through and three nurses and just Mary Paine of Standing Proud are one CA who's doing it. How have we done so since 2019 99.4% of the patients we've seen did not get an operation so 0.6% of kids appeared in an operation for Pylon auto disease so it's fairly unusual and you could probably say unless there's like I mean I remember those kids big guy did everything he just said a lot of hygiene issues and just nothing worked send in the plastics severely autistic kid couldn't really even get near very much in the clinic he got a flat and again we remember them 54% of our patients on their first visit with us get a pipping they come in they've got pits we do the pipping do the first laser send them on the way if they heal like that picture with the pits that heal the scar they don't have Pylon auto disease they have one outpatient clinic visit wall fam and they don't have Pylon auto disease anymore 2.9% of our patients have needed general anesthesia and that's dropping like a stone autistic kids actually tend to tolerate the shots and the laser pretty well and last like it was an autistic kid on two days ago who tolerated things fine he was also 346 pounds and about 64 and I thank God he tolerated fine so he was about to have murdered me but he easily murdered me but the but again it's you got to be pretty badly autistic and not tolerate it our Achilles heel 45% of our patients are lost to follow up 15% are a pit and slit so they come in either pit picking and then like we never see them again and we're like what happened to them and and the other one is that what 16% of our patients have active disease when last seen since 2019 a lot of the ones basically they're they didn't finish off the lasers and we've been sort of trying to figure out what age can we stop because the colorectal surgeons say that people with Pylon auto should shave their butt crease until they're 30 years old every week they should shave it until they're 30 hormones sadly start dropping like a rock after you're the 18 to 19 year old peak and so we're kind of like early 20s to mid 20s we're telling people that there's no bother one interesting thing we've got seven patients who are transitioning from female to male who have developed Pylon auto disease when he went on the testosterone during their transition they've gotten Pylon idols and then awful skin so it appears to be testosterone related so those were I never since 2019 other things were working on so we're trying to our high-divitized dermatologist went out on maternity and we're trying to make that more secure because that's a horrible problem that's worse than Pylon idols and there's actually I did a hand-doc search of the data warehouse here over 500 kids here with hydride nitrous that are being cared for in an institution there's like all over the place and there's no no one in Durham that wants to do it and they're kind of like it's a lost disease here but there's a big group of kids here who are coming in and out of the ER we see them when they have something needed to be popped but again they're that's a terrible disease that we don't do a very good job of the way that we do it was picked up by Apsa as part of the review they did a few years back Stanford is taking everything everything you hear coming out of Stanford they've doing some really nice research studies it's all ours they the nurse practitioner came we gave her all our papers we give all our surveys we were all of our stuff as she took out last and they have a really nice program they're volumes smaller but they doing they just did when they're pit-ficking they were sending pit-ficking skin plugs off the path and they measured hormone receptors in the skin and found there was a disordered hormone receptors in the skin of these girls who were getting Pylon idols compared to people that didn't have Pylon idols which was fascinating and this mid-cycle pain which we've seen Daniel Cameron before she left she was like hanging around Pylon idol and tried to like was having chat with Nikki about setting something up at MGH I don't know if she's done that yet or not an Arkansas but we get calls all the time about people from somewhere like most recent was Arkansas actually because Bethany Farh was maybe a shirt fellow it's a couple years back is in Arkansas now Arkansas children's so Bethany called me and I chatted with them about setting up something down there so they're they have a lot of Pylon idols disease in Arkansas our Achilles heel is the loss to follow up and we right now have are doing with the people finder trying to find people to see what happened to them to fill that in because our our loss of all percent is too high and we have to fix that we have zillion pictures and I'm actually looking through pictures trying to correlate them right now and the effect of medications we don't treat Pylon idols with medications but we treat hydrodynamic we treat hydrodynamic and other philicolitis with meds whether it's you know creams or you know humera or something you know it's treated with a lot of different medications that we don't use for Pylon Idol mark Peter has started giving some kids like doxy to help settle down their Pylon there's a bad one he's got a bad kid right now who's had he's had I think 12 operations for Pylon Idol kid from Connecticut and uh so he's trying to like calm it down a little bit with the um doxy okay so Pylon Idol principles well Pylon Idol disease is just poorly located adolescent philicolitis I mean that's all it is um it's not hair or roting it's not it's it tends to run in families it's people with really good hair um who tend to get it and it's probably their hair's probably a little more inflammatory than other people's hair 99.4% of patients in our group are able to be treated without an operation so there may be still be some indications for operation but you hear about these people doing like all the flaps you know everybody like the the one I showed we wouldn't operate on that person and we could resolve that in the clinic on the first visit um it's just source control instead of removing the pocket we prevent the reason why hair is getting inside the body in the first place and that seems to be doing it and again the general concept is especially these teenagers to convert this life disruption into just an annoying thing few annoying doctors visit come in and get a laser you know big rumble and go home and it doesn't affect their adolescent life that's all I got and thank you very much well I think um your legendary in in the world of pediatric surgery for this work and and um first I would acknowledge that there's a lot of people on zoom including much of your team because I've looked at who's here for those online put your questions in Q&A and I'll try to get your questions but I just want to you know common in the history here we are a department to to a significant extent of hyper specialist um and our anesthesia colleagues who were with us I've seen that like it's the same people all the time doing certain types cases um you don't see many poly not almost any polynitals in our operating rooms in an anesthesia for the reasons just described that is not typical of other institutions pediatric or adult and when dr. Mooney started doing this I think most of the faculty were just ecstatic because most surgeons don't like dealing with what they would actually call the butt pus um that's like the deals that slightly less than uh the patients uh the ones who are suffering with this but surgeons don't like this either I was actually one of the surgeons who was disappointed a little bit because I liked dealing with pylon idol disease in part for the reasons that davis is grabbing it's incredibly gratifying to take a kid at adolescents you know teenagers who I mean this this this really messes with their lives it's hard enough to be a teenager but to have it to be a teenager who who has you know bad odor or sometimes bad enough to have wetness um and thinking about intimacy and there's no way I'm getting intimate um uh it's a really big deal so I used to love helping those kids um but in the interest of hyper specialization and having people develop expertise and really getting good data I started sending all my patients to to to uh davis and they never came back uh and it's clear why um so for those who who wonder why we do what we do it's to make a difference and I had um discussion with davis last week and the gratification of having 1400 kids who mostly don't have this problem anymore the ones who are lost to follow up I suspect a fair percentage of them you know whenever we have things lost to fall up in medicine we have to assume that they're dead they went to somebody else because we were no good or in this case I think a lot of them may have just gotten better because when they go to soccer practice and come back to you to have a seat at their butts better you know maybe they just went soccer practice instead um so it'd be great to have that that kind of follow up um but um uh for for those who don't see these patients anymore it's not that they're not out there right it's that there is a new way of dealing with them and for those of you who have built this team um it is a machine I mean lots of childrens isn't always known for being the most highly efficient sort of clinic operation I want to watch this and for those of you who have been there this is a machine um and you guys see a lot of patients in a day and there's several rooms they go from room to in this supervision and PAs and and and and and and married directing traffic and and and um laser's it's really incredible um so um I'm gonna start by just thanking you and um uh open this up to to questions from any of your group um if you're on zoom I'll just type in the Q&A how long would you say it takes to recoup the cost of the laser we've talked about this before like if you're talking about starting this clinic somewhere else and you're trying to convince someone to buy a hundred and twenty thousand dollar laser what's the amount of time that you think it would take a clinic to recoup the cost of that you know that's actually what everyone wants to know because the laser is so expensive and they want to know well how do you how unhect you get a laser and how do you how do you pay them for the laser um so the the way that that works is that we don't charge for the laser because is our laser procedures are performed by a nurse and in the hospital if a nursing performed procedure is free but in the flip side is because we we pay the hospital facility fee for each time we use the laser but we charge for a visit we charge for procedure we charge for all these other things that are that more than pay for the laser so I'm not sure we get patients because we don't charge them for the laser they have to pay their copay is anything for their visits but it's um we we don't and it's part of that is being at Boston Children's Hospital where when you want something you get it versus an institution that's you know financially struggling we did the hospital back when they were pretty flush had money one year and every fall they put out just anyone have equipment they need and uh Katsun and Kata's the laser while I'm sure there are other people deeply involved but thank you uh but the laser shut up we got this laser now that we have the laser and we broke it we had to get into it you know want to lose your laser so we get a replacement laser so but it's everyone wants to know that yeah laser depilation is generally not covered by insurance it's a conservative cosmetic procedure and it would be a burden to these families and quite a chilling effect on getting them in for appropriate care it turns out the economics work quite well because the insurance company does pay for the visit and they do pay for the pit picking which actually that more than makes up the difference and the laser's last years I mean yes you do a vacation at places we stop moving it we used to move it down the plastic surgery move it back to the tumor but now it stays there a lot of sense of your sense of equipment I had a a biological question you know all of us were trained that undrained pus is a bad thing and you should never close we leave wounds open all the time we leave drains in for wounds are infected why is it that you can take out the epithelial line tracked with the with the punch biopsy and close it I understand they're not primary infections but there's certainly bacteria in there why is it that trapped in bacteria in by putting a stitch in doesn't create an infection yes what we do when we remove the pit of this a schnit which is like a really long like a big mosquito reach in and pull out anything if there's a bunch of hair or a bunch of like pots or pocket in there I'll make an opening on the side so it comes out there to make an opening and notch the opening so delayed the healing of the notch and but if it's just not much in there then I just close it I assume to get a little bit of reaction that settles down so again every month or a couple of months because there's so many of these still be some of the pocket that we probably should have drained it didn't and that it'll come back out the pit hole or you know we'll have to drain it later but if it's a pocket of any size more than say centimeters centimeters I mean have around I'll make a notch on the side and drain that pocket so it comes out the side and not the pit holes well who would have ever thought a decade ago that we would have a destination clinic for people who film from five states that have their polynomial condition treated but in fact it's worth it for the families and I review many of you get the emails of the family surveys of how the experiences are and we have just extraordinary continual gratitude for all of the team in the polynomial clinic and the vast majority kind of goes to you for conceiving it and building it and so thank you and congratulations for making such an important impact well thanks thank you