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Hey, Prime members, you can binge episodes 41 through 48 of Mr. Ballin's Medical Mysteries right now and ad-free on Amazon Music. Download the app today. On a cool fall morning, a group of boys laughed and ran around a playground in rural Mississippi. One boy suggested a competition to see who could jump the furthest off the swings.
The first boy to jump soared off his swing and landed a few feet away in the sand. But as the next boy went to jump, the first boy's swing, which was now empty, came back and smacked him square in the face, sending the first boy flying to the ground with blood pouring out of his nose. The boy carefully reached up and touched his nose, and when he did, he felt it give way under his fingers. He shook his head. He knew his nose was broken because he had broken it before.
As other children gathered around, the boy just sat on the ground feeling totally disheartened. He hated going to the hospital. He'd been there a lot. He'd broken a couple of his fingers a few years back, and he also had dislocated his shoulder twice. And the boy had never forgotten what he overheard his doctor say the last time he was in the ER. The doctor had told his mother, your 10-year-old son has the bones of an 80-year-old man.
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From Ballin Studios and Wondery, I'm Mr. Ballin, and this is Mr. Ballin's Medical Mysteries, where every week we will explore a new baffling mystery originating from the one place we all can't escape, our own bodies. If you liked today's story, just before the apocalypse starts, remove all the labels off the Follow Button's canned goods and unplug their doomsday shelter. This episode is called Hard Case to Crack.
18-year-old Aaron Blocker shifted uncomfortably in his seat. It was January 2011, and the Mississippi College freshman was doing his best to pay attention in his chemistry class. Chemistry was usually Aaron's favorite class. He dreamed of being a scientist himself. But today, he was distracted. His stomach was cramping, and he really had to go to the bathroom. Aaron had Crohn's disease, an illness that causes stomach cramps, severe weight loss, and diarrhea.
He'd been diagnosed the year before, but for the past few weeks he'd been suffering from a prolonged flare-up. Already this morning, Aaron had left the lecture hall three times to go to the restroom. Aaron tried to ignore all the twisting and churning that was going on in his stomach and just listen to the lecture, but pretty soon Aaron realized he couldn't ignore it any longer. So, like he already had three other times so far this morning, he quietly got up and began heading for the door again.
But as Aaron climbed the stairs that led out of the lecture hall, he tripped over a backpack and nearly fell. Now immediately, Aaron heard people laughing at him in the classroom, but that didn't really bother him because all Aaron was thinking is, "Thank goodness that was not worse."
Aaron had always been a bit uncoordinated, and he did fall kind of a lot, and unfortunately, he was very prone to breaking bones from even the mildest of impacts. As a child, he had managed to break his nose, his fingers, and his wrist, and he had also dislocated several joints. Thankfully though, on this day, Aaron did reach the doors of the lecture hall in one piece, and then once Aaron was out the doors, he hustled his way down the hall towards the bathroom.
Two nights later, Aaron sat in the college cafeteria across from his girlfriend, Emily, who he had been dating for nearly a year. Aaron was a grade ahead of Emily, so she was actually still in high school, she was a senior. But his college was not far from her home, and so she came to visit him whenever she could. Emily had just gotten her first tattoo, and she was telling Aaron all about the experience, but Aaron was having a really hard time focusing on her story.
The distinctive sort of greasy aroma of sloppy joes and tater tots filled the busy dining hall and it was making Aaron feel really nauseous. He was on a restrictive diet because of his Crohn's disease and the cafeteria's very greasy food was brutal on his stomach. But his dorm didn't have a kitchen, so he really had no other choice but to try to eat as much as he could handle. As he tried to force down some food, his stomach suddenly spasmed and Aaron clutched his belly in pain.
Emily saw this and stopped her story and asked if he was okay, but Aaron sort of brushed it off. He said he was used to the pain and told her not to worry. But this time, the pain was just too much, and Aaron doubled over in agony as another spasm cut through his gut. Emily shot up from her chair and put her arm around him, and then whispered to him that he really needed to go see a doctor.
And Aaron nodded and told her that, you know, his abdominal pains had been getting worse and worse for days. And so Emily gathered up all their things and then called a taxi to take them to the nearest hospital. A couple of hours later, Aaron laid in a hospital bed in the emergency room with Emily sitting by his side. The doctor had ordered an immediate CT scan of Aaron's abdomen, and so now they were just waiting for the results.
Aaron clutched Emily's hand and let out a deep breath. He was, unfortunately, quite used to hospitals, doctors, needles, and machines. And in virtue of being Aaron's girlfriend, Emily, too, was very accustomed to this environment. Aaron was very grateful to have his girlfriend by his side. And so he looked up at Emily, and he told her he just could not imagine going through all this stuff by himself.
But before she could reply, the ER doctor came into the room with Aaron's test results. And the doctor got straight to the point and said he'd found something very troubling in Aaron's CT scan. But it was actually not Aaron's gut that was concerning the doctor. He said during the CT scan, as they're trying to photograph his abdomen, the scan had kind of inadvertently caught a bit of Aaron's hip bones. And basically, the bones showed signs that they were dying.
It's a condition called a vascular necrosis, which happens when blood supply to a bone is cut off and so the tissue decays. Aaron closed his eyes and grimaced. He wondered if maybe this condition he'd never even heard of might explain his history of so many broken bones. Aaron quickly filled the doctor in about his medical history and how doctors had really struggled to figure out why his bones always seemed so brittle.
Throughout his childhood and teenage years, Aaron had been tested for various conditions, from common issues like arthritis to a rare genetic condition called Wilson's disease. But each time, the results were either negative or inconclusive.
It wasn't until Aaron was diagnosed with Crohn's disease a year ago that Aaron finally got an answer that sort of made sense. His doctor had told him that because his Crohn's disease had been untreated for so long, Aaron had been malnourished and as a result his bones were weakened. But that was a year ago and since then Aaron had done everything in his power to eat right and build up his strength and so it just seemed like, you know, he would have been doing better by now.
The ER doctor listened closely and took a bunch of notes. Then after Aaron was done speaking, the doctor asked him if he was taking any new medications. And Aaron nodded and said that yes, for the past eight weeks, he'd been taking low doses of a steroid called prednisone to help reduce the inflammation caused by Crohn's disease.
Aaron could see from the ER doctor's expression that he was puzzled. The doctor said that steroids could cause bone damage like this, but only with prolonged use and high doses. In his opinion, eight weeks was just not enough time to cause this much damage to Aaron's hips. But just to be safe, the ER doctor recommended that Aaron go see the other doctor who'd prescribed him this steroid to see if maybe they could change his treatment plan.
Aaron's mind was swirling. He had convinced himself that if he could just get his Crohn's disease under control, he could live a normal college student life. But now here he was, being told he had an even bigger problem with no clear solution. And so Aaron shook his head in disbelief. But at the same time, he tried to stay positive. He hoped that if he stopped taking steroids, his bones would stop breaking down and he would get better.
Two years later, on a muggy summer day, Aaron clutched the sticky vinyl seat of a campus shuttle bus. Every time the bus hit even the smallest of bumps, Aaron would feel pain shooting through his hips. Aaron was now 20 years old and working hard towards his degree in biology and medical sciences. It was fascinating to him to learn how the human body worked. He hoped that someday he'd know enough to understand what was happening to him.
Because Aaron was still in constant pain. His weakened hips made it really hard for him to walk around campus, so he took the shuttle bus as often as he could, even though it was quite painful. Right after visiting the emergency room two years earlier, Aaron had stopped taking steroids, but that hadn't helped, and his hips had only gotten worse. At this rate, Aaron knew he could be facing a hip replacement surgery before he even turned 30 years old.
When the shuttle bus came to a stop, Aaron carefully climbed down the steps and limped into the lobby of the school's medical building for an appointment with his orthopedist. He sighed as he shuffled his way into the very familiar waiting room. Doctors and nurses and hospitals were now as much a part of Aaron's life as college professors. A few minutes later, Aaron hobbled into an exam room and climbed up onto the crisp white paper covering the examination table.
When the doctor arrived, he asked Aaron to lie down, but Aaron was in so much pain, the doctor had to actually help him lie down. After poking and prodding Aaron and also guiding Aaron's legs through several movements to check his range of motion, the doctor stepped back and grabbed Aaron's latest scans and began looking them over. And as he did, Aaron could tell he was very likely about to hear some bad news. He had seen that same concerned look on many doctors' faces in the past.
Finally, the orthopedist lowered the paperwork and told Aaron that his vascular necrosis in his hip bones had continued to worsen and it was leaving behind a lot of dead bone tissue. And so he wanted Aaron to consider a surgery called core decompression to remove the diseased bone in Aaron's hips. Once the dead bone was gone, new blood vessels could develop and healthy bone could grow back. Ideally, this procedure would reduce Aaron's pain and help him avoid total hip replacement surgery down the road.
Aaron was so desperate to feel better that he only had one question: How soon could they schedule this surgery? Eight weeks later, Aaron was at home in his small off-campus apartment studying in bed. He hadn't been able to move much since his surgery and he was irritable at how slow his recovery had been. He was having trouble focusing on the biology textbook he was reading, so he put it down and reached for the TV remote.
But when he clicked the power button, the TV wouldn't turn on. Heron wondered if maybe the remote's batteries were dead. So he carefully swung his legs over the side of the bed, grabbed onto his headboard, and pulled himself upright.
Then Aaron grabbed the aluminum walker right next to his bed that he needed just to get around, and he inched his way across the room to his desk. He pulled two AA batteries out of the desk, but then he dropped one of the batteries as well as the back of the TV remote onto the floor, and Aaron suddenly thought to himself, what is he going to do?
Getting down on the floor on his hands and knees was just totally out of the question. It would not only be very painful, but he also might not be able to stand up again. And so Aaron just suddenly felt overwhelmed by how much pain he was in, how inconvenient his life now was, and also just the fact that two months after surgery, it just did not feel like he was getting any better. But just then, Aaron heard the key in the front door, and a moment later, his girlfriend Emily called out his name.
Aaron was so relieved that she was there. He yelled that he was in his bedroom and he could really use some help. Emily came into the room and she could see that Aaron was very distraught. She helped him back into his bed and then reached under the dresser to retrieve the battery and the back of the remote. Emily suggested that Aaron just close his eyes for a half hour and she'd make him some lunch. Aaron smiled and felt so thankful to have Emily in his life. And then he did close his eyes. But Aaron was too anxious about his situation to fall asleep.
It felt like his life's goals were slipping away from him. Aaron had had to take time off of school after the surgery, and he didn't want to delay getting his degree any longer. And so he really just had to find a way to get better soon, or else the future that he longed for with Emily just wouldn't be able to exist. Mr. Balling Collection is sponsored by BetterHelp.
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Just visit simplisafe.com/ballin. That's simplisafe.com/ballin. There's no safe like SimpliSafe. One month later, a nurse at the orthopedist's office led Aaron into an exam room and closed the door behind them. Aaron attempted to climb the tiny step stool in front of the examination table like he had done so many times in the past, but this time the pain in his hips was so extreme he just couldn't do it. So he opted for a chair instead.
A minute later, Aaron heard a soft knock on the door and his orthopedist came in. The doctor pulled up a stool in front of the room's computer monitor so they could look at the results of Aaron's latest CT scans. Once the doctor had pulled up the images, he pointed to the balls in both of Aaron's hip sockets and then he pulled up another image of a healthy hip joint to compare.
The doctor said that on the healthy hip, the ball and socket looked like a smooth round sphere surrounded by space. But on Aaron's hips, the balls looked broken down and fractured. The joints were surrounded by white shadows that represented scar tissue that had grown and grown over the years.
This was obviously not what the doctor or Aaron had hoped for. The bones in his hips were grinding together and continuing to break down, which meant the core decompression surgery was a failure. Aaron asked the doctor why his bones kept decaying no matter what doctors recommended, and the doctor admitted he simply didn't know. The doctor said the next step would be a double hip replacement surgery.
But he assured Aaron that although it was unusual to replace hips in someone so young as Aaron, it was a common surgery with great results. And so he told Aaron that after his surgery, he would very likely be able to walk easily again and his pain would be gone. But despite that, this was still a very difficult decision for Aaron.
If he went through with the hip replacement surgery, he would need up to a year of recovery and rehab, which would mean putting his schoolwork on hold again when he was so looking forward to graduation and doing scientific or biomedical research in the real world. And so this was going to be a really challenging decision.
But then Aaron stood up to go get his jacket, and his hips hurt so much just walking the three feet to the coat hanger, Aaron realized he really had no choice here. The pain was so bad and it was only getting worse, and so he basically had to do the hip replacement surgery. Four years later, in 2016, the clock radio on Aaron's nightstand belted out a pop song jolting him awake. Aaron rolled over and hit the snooze button, and as he did, he smiled.
Before his hip replacement four years ago, rolling over would have been so painful. But now, he was moving just fine. It had taken a long time to become this healthy again. Following the hip replacement surgery, Aaron had to stop going in-person to school and take online classes in order to finish his degree on time. He spent his time mostly indoors and bedridden, but slowly, he had regained his mobility and had gotten his life back on track.
Aaron had graduated from college and was now pursuing a master's degree in biomedical research at Mississippi College. At the age of 24, four years after the surgeries, Aaron was finally focusing on his future rather than his pain. Through it all, Emily had stayed by his side like always. And at the end of 2012, Aaron asked her to marry him and to his delight, she had said yes. They were married on August 1st, 2013, the best day of Aaron's life.
Aaron could hear Emily in the kitchen cooking up some breakfast. A moment later, she called to him and asked if he wanted some eggs. Aaron yelled back that he'd be right there as he put his slippers on. Just then, Aaron's alarm clock went off again, and without thinking, Aaron twisted around to stop it. And as he did, he suddenly felt an excruciating pain in his left hip, the worst pain he had ever felt in his entire life. Aaron instantly writhed in pain and fell back on the bed and shouted for Emily.
She rushed into the bedroom and tried to help Aaron stand, but he couldn't move his left leg at all because the pain was now totally unbearable. And so through gritted teeth, he asked Emily to hand him his phone. And when she did, Aaron called a friend. And a few minutes later, that friend arrived and together with Emily, they helped lift Aaron up and carried him out to the car so they could drive him to the hospital.
An hour later, Aaron lay on a gurney staring up at the hospital ceiling lights flashing past him as the ER staff whisked him down a hospital corridor to the CT scan room. Aaron had hoped that these emergency visits were behind him, but here he was again amidst the smell of disinfectant, the high-pitched sounds of equipment, and very sick people just like him. In the scan room, technicians helped move Aaron's aching body to the motorized table, making Aaron groan every time they touched him.
As the table began to move, Aaron could hear buzzing and whirring noises as the machinery took images of his hips and midsection. Even lying there was painful because Aaron had to clench his muscles to keep his legs perfectly still. Once the scan was over, Aaron clenched his teeth in pain as the technicians shifted him back onto the gurney and then wheeled him back to a waiting room. And after an agonizing hour of waiting, a doctor finally came in the room to go over the results.
As the ER doctor pulled up Aaron's files on the room's computer, Aaron filled him in on his history with Crohn's disease, a vascular necrosis, and hip replacements. Aaron was so accustomed to recounting his medical history that it now came out like a well-rehearsed presentation.
The doctor turned the computer monitor towards Aaron and told him that based on the scan, his hip implant had popped out of the socket and shifted into the wrong place. So the dislocated hip would have to be adjusted manually, a procedure the doctor warned would hurt, but only for a moment. The doctor asked Aaron if he was ready for the adjustment, and Aaron just sort of nodded and said okay. Then a second doctor came in to help with the procedure.
Together, these doctors all around the bed forcefully pushed Aaron's hip back into place. And true to their word, it was a split second of agonizing pain. But it quickly dissipated, and Aaron felt much better. He asked the doctor what was next, and he got a familiar answer. Go back to your orthopedic surgeon for a follow-up. Several days later, Aaron sat inside the usual exam room at his orthopedist's office.
The doctor examined Aaron's CT scans in silence for a minute, and then finally he spoke and Aaron felt his heart sink. The doctor said that even though they had successfully popped the hip back into place, that didn't solve the underlying problem. Aaron's left hip implant had become loose because the bone around it was still decaying. And it was now only a matter of time until the same thing happened with his other leg. As a result, his hip implants were now too small to properly fit inside of their sockets.
Aaron was shocked. How could this have happened? He'd followed all his doctor's instructions for years throughout his multiple recoveries and rehabs. He was very careful with his hips and he stayed away from really strenuous activities. And yet he'd still dislocated his hip just from getting out of bed. It felt like all the progress he'd made was kind of for nothing. Aaron wondered what he could even do at this point to ease his pain.
The orthopedic surgeon told Aaron that he couldn't really explain why Aaron's hips were in such bad shape, but he could tell him what should be done to respond. The only remedy he could suggest for now was to remove the damaged old implants and replace them again with larger ones. Aaron left the doctor's office in silence and headed for the parking lot. Then, alone inside of his car, Aaron burst into tears. He just didn't know how much longer he could keep going like this.
By the time Aaron got home, his despair had morphed into anger. He had already endured 11 serious surgeries and more broken bones than he could count, and he was only 24 years old. He'd seen a parade of doctors, and none of them had come remotely close to figuring out what was actually wrong with him. Even if he got another hip replacement, Aaron knew it was only a matter of time until he would have to do it again and again and again if his bones continued to decay.
Aaron wondered if maybe he would just spend the rest of his life in a wheelchair. Just then, Emily got home from work, and when Aaron saw her, he went from being mad back to being sad all over again, and he broke down and just started crying. Emily tried to comfort him, but Aaron was inconsolable. So Emily just kind of let Aaron vent, and then once he was done crying and kind of talking about what was going on, she asked him to come keep her company in the kitchen while she made them dinner.
Aaron smiled at her and then slowly eased himself into a chair at the kitchen table while Emily poured the Meech some wine. A few minutes later, Aaron had calmed down and he was thinking clearly and he told Emily that too many elements of his medical story just didn't add up. Why would his hip implants fail after four years when they were supposed to last 20 years? Why didn't any of the other surgeries work? What was actually going on with his bones?
If he was going to subject himself to yet another hip surgery, Aaron wanted to make sure he'd exhausted all other options first. But at this point, Aaron didn't trust any doctor to figure it out for him. So if he was going to find a solution, he felt like he would need to do it himself. Several weeks later, Aaron sat in bed with his laptop resting on his lap. Next to him, Emily was quietly reading a book.
Aaron had compiled just about all of his medical records dating back to when he was a child. And finally, thanks to his years of studies, he could actually understand what they all meant. When he looked at all of his records together, Aaron found patterns that did make sense for a person suffering from Crohn's disease. But so far, nothing he was seeing could explain his weakened bones. Then, all of a sudden, Aaron sat up straight with a huge smile on his face.
Emily noticed and put her book down and asked what was going on. And he showed her a series of his medical records going back a decade, all indicating severely low levels of an enzyme he'd only heard of once before called alkaline phosphatase.
Back in 2010, when Aaron was a junior in high school, one of his doctors had noticed he had low levels of this enzyme, which was why Aaron had been tested for the genetic condition called Wilson's disease. Now, Aaron did not think much of this at the time, since the results were inconclusive, and no one had ever mentioned the enzyme again. But as Aaron dove deeper into his medical records, he noticed the low levels of the enzyme in 2011 as well. And 2012, and 2013, and...
In fact, every year since 2010, his blood tests indicated low levels of alkaline phosphatase. Emily and Aaron looked at each other. What was this enzyme? And what did having low levels of it mean? They wondered if maybe it was the key to understanding what was going wrong with Aaron's body. Emily looked on hopefully as Aaron typed in "what is alkaline phosphatase" into an online search engine.
The first result he got back was for a website dedicated to an ultra-rare disease with a long name Aaron had never heard of. Aaron clicked on it and then immediately after reading just a couple of sentences, he looked at Emily with a big smile on his face. All of his symptoms matched up with what he was reading. Aaron had no doubt he had just found what he was looking for.
A week later, Aaron sat across from his doctor, studying his face as the physician read over the printed out pages Aaron had brought for him. The doctor was unfamiliar with this very rare disease that Aaron had found online, but he agreed that it did make a lot of sense and it could be directly caused by the low levels of alkaline phosphatase in his blood.
Aaron suspected he had a condition called hypophosphatase. It's an ultra-rare metabolic bone disease that affects the body's ability to make alkaline phosphatase, which helps bones stay healthy by absorbing essential minerals like calcium, phosphate, and magnesium. When there's a deficiency in alkaline phosphatase, the minerals don't get absorbed by the bone. Instead, these minerals collect on tendons, kidneys, and other organs and cause serious damage.
In Aaron's case, they had collected on his hip bones. Aaron's doctor ordered immediate bone scans to test for hypophosphatasia, and a few days later, the bone scans confirmed Aaron's theory was right. Miraculously, Aaron solved his own lifelong health crisis. In 2018, one year after his successful diagnosis, Aaron started on enzyme replacement therapy, which is the only treatment known for hypophosphatasia.
Aaron also had nine more surgeries to undo damage that had already been done to his body. But since starting the enzyme replacement treatments, Aaron's bones have stopped decaying and calcium deposits in other parts of his body have disappeared completely. As for his Crohn's disease, which actually had nothing to do with his bone condition, that is in remission. But to this day, Aaron still does deal with small levels of pain every single day.
Aaron successfully finished his master's degree and started a family with his wife. Currently, he works as a data and analytics consultant for a hospital system and is a prominent patient advocate for hypophosphatasia.
Hey, Prime members, you can listen to new episodes of Mr. Ballin's Medical Mysteries early and ad-free on Amazon Music. Download the app today. And also, Wondery Plus subscribers can listen to Mr. Ballin's Medical Mysteries ad-free. Join Wondery Plus today. Before you go, tell us about yourself by completing a short survey at listenersurvey.com.
From Ballin Studios and Wondery, this is Mr. Ballin's Medical Mysteries, hosted by me, Mr. Ballin. A quick note about our stories. We use aliases sometimes because we don't know the names of the real people in the story. And also, in most cases, we can't know exactly what was said.
But everything is based on a lot of research. And a reminder, the content in this episode is not intended to be a substitute for professional medical advice, diagnosis, or treatment. This episode was written by Michael Selditch. Our editor is Heather Dundas.
Sound design is by Matthew Cilelli. Our coordinating producer is Taylor Sniffen, and our managing producer is Sophia Martins. Our senior producer is Alex Benidon. Our associate producers and researchers are Sarah Vytak and Tayshia Palaconda. Fact-checking was done by Sheila Patterson. For Ballin Studios, our head of production is Zach Leavitt. Script editing is by Scott Allen and Evan Allen. Our coordinating producer is Matub Zare. Executive producers are myself, Mr. Ballin, and Nick Witters.
For Wondery, our head of sound is Marcelino Villapondo. Senior producers are Laura Donna Pallavoda and Dave Schilling. Senior managing producer is Ryan Lohr. Our executive producers are Aaron O'Flaherty and Marshall Louis for Wondery.
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