MrBallen’s Medical Mysteries - Ep. 43 | Hard Case to Crack

Episode Date: July 30, 2024

A college student in Mississippi has to put his life on hold when his hips literally begin to die. Facing a life of unbearable pain, he must dig deep into his past to find a cure.Follow MrBallen's Medical Mysteries on Amazon Music or wherever you get your podcasts. New episodes publish for free every Tuesday. Prime members can binge episodes 41-48 early and ad-free on Amazon Music. Wondery+ subscribers can listen ad-free--join Wondery+ in the Wondery App or on Apple Podcasts.See Privacy Policy at https://art19.com/privacy and California Privacy Notice at https://art19.com/privacy#do-not-sell-my-info.

Hey Prime members, you can binge episodes 49 to 56 right now and ad-free on Amazon Music. Download the app today. In early 2016, a 24-year-old graduate student used crutches to slowly make his way toward his professor's office. The student was wearing a large brace that wrapped around his waist and his right leg. When he finally made it to the office, his professor looked up at him in surprise and asked what happened. The student said he'd dislocated his hip. The professor, who also happened to be a medical doctor, looked totally shocked.

He told the student that the hip was the most difficult joint in the entire body to dislocate. It only really happened when people suffered serious physical trauma like from a car crash or a really bad fall. And so he asked the student, like, how in the world did you dislocate yours? And the student just said all he'd done

was try to get out of his bed. thinking. And Audible makes it easy to be inspired and entertained as a part of your everyday routine without needing to set aside extra time. As an Audible member, you choose one title a month to keep from their ever-growing catalog. Explore themes of friendship, loss, and hope with remarkably bright creatures by Shelby Van Pelt. Find what piques your imagination. Sign up for a free 30-day Audible trial and your first audiobook is free. Visit audible.ca to sign up. Have you ever wondered who created that bottle of sriracha that's living in your fridge? Or why nearly every house in America has at least one game of Monopoly? Introducing The Best Idea Yet, a brand new podcast about the surprising origin stories of the products

you're obsessed with. Listen to The Best Idea Yet on the Wondery app or wherever you get your podcasts. 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. On a weekday afternoon in 2007, 15-year-old Aaron Blocker had just gotten out of school.

There wasn't much to do in his small town outside of Jackson, Mississippi, so he and a few friends were just hanging out in their high school parking lot, sitting in the bed of Aaron's grandfather's truck. Aaron's grandmother was a teacher at his high school, and his grandfather had come by to help her out after class. So Aaron and his friends were in the back of the truck, messing around like teenagers do, and at one point, Aaron went to jump out of the truck.

But as he did, his foot got caught on the railing around the bed, and next thing Aaron knew, he did sort of a flip through the air and then landed hard on the concrete. His right elbow crashed into the pavement, sending a jolt of pain through his arm. It was like hitting his funny bone, but a thousand times worse. The pain immediately brought tears to his eyes. Aaron heard his friends asking him if he was okay, and he managed to nod and say, yeah, I'm fine,

and then he pushed himself up off the pavement. Instinctively, he gently began to feel around his right elbow where he'd landed, and he could tell that it was already very swollen. In fact, he wondered if he'd actually broken the bone. And that would be no surprise, because Aaron had a long history of breaking bones. Despite his young age, he'd already broken his fingers, his wrist, and his nose multiple times. Aaron had been born with bowed legs, so he walked a bit more clumsily than most people,

and he did tend to trip and fall more than the average person. That's exactly how he'd broken his wrist, from tripping and falling. But really, Aaron chalked up his impressive list of broken bones to the fact that he was kind of a reckless kid. He'd broken his fingers falling out of the top bunk of a bed, and he'd broken his nose on a swing set. Jumping out of the truck clearly hadn't been the best idea, and now he'd hurt himself yet again. So Aaron clutched his elbow and began walking towards his high school to tell his grandparents what happened. And within just a few minutes of doing that, they were on their way to the hospital. And when they got there, Aaron immediately had an x-ray, and sure enough, he had broken his elbow.

In 2009, the now 17-year-old Aaron found himself back in the hospital. But this time, it was not for a broken bone. It was for a dislocated shoulder. By this point in his life, Aaron had dislocated his shoulder more times than he could count. It happened with the smallest of force. Sometimes he'd wake up in the morning and his shoulder would just be out of the socket, like just from sleeping on it. He'd gotten so used to this that he was pretty much an expert at popping his joint back into place all by himself. But things had changed a year ago when he was 16 and Aaron underwent a surgery to stabilize his shoulder. Doctors had basically gone in and tightened the ligaments that were supposed to keep his joint in place.

The surgery had been successful and Aaron's shoulder hadn't dislocated since. At least, not until earlier that day, when Aaron had again made what was, in hindsight, a bit of a reckless decision. He'd gone to a trampoline park with some of his friends, and during all the chaos and jumping around, Aaron had, at some point, felt the all-too-familiar pain in his shoulder. And when he looked down, he realized, despite the surgery, his shoulder was once again dislocated. And so now Aaron was sitting in a hospital, regretting the trip to the park.

Just then, a doctor came into Aaron's hospital room with the results of some recent imaging scans. The doctor explained that Aaron had not only dislocated his shoulder, but actually torn the ligaments that his first shoulder surgery had fixed. So, if he wanted his shoulder to stay in place, he was going to have to undergo another surgery. Aaron was not looking forward to another operation, but he also didn't really have a choice. So he went under the knife yet again. And three weeks later, he walked across the stage at his high school graduation while wearing a sling. A year and a half after graduating high school, Aaron's life was very different in a good way.

He was now 18 years old and attending a local community college, and he just celebrated his one-year anniversary with his girlfriend, Emily. But despite all these positive things happening in Aaron's life, one thing had not changed. He still found himself lying in a hospital bed way more often than most other people his age. And that's where he was in January of 2011. And this emergency room visit didn't have anything to do with Aaron's bones or joints. Instead, he was there because he was having a severe flare-up of Crohn's disease. Crohn's disease is an autoimmune disorder that causes inflammation in the digestive tract. It can lead to painful gastrointestinal symptoms, weight loss, and even malnutrition.

Flare-ups, when the disease is most active, can make patients so sick they can barely get out of bed except to go to the bathroom. Aaron had been diagnosed with Crohn's about a year earlier during his first semester of college. He'd gone through months of severe pain and diagnostic tests before doctors finally figured out what was going on. By that point, he was so sick that he had to be hospitalized to get his swelling under control and get some much-needed nutrition into his body. Aaron had been mostly alright since then, but he suspected that the stress of going to college may have triggered this particular flare-up, because now he was almost as sick as he had been

when he was first diagnosed. Aaron heard a soft knock at his hospital room door. A member of the ER staff poked their head in and told Aaron that an orthopedic doctor was going to come by to see him. Aaron was confused by this. Normally, Crohn's disease was treated by a gastrointestinal doctor, not a bone specialist.

He asked why, and the staff member just said it had something to do with one of the CT scans that they'd just done on his abdomen. Aaron didn't know what to make of that, but based on his long history of injuries, in particular bone injuries, he knew this could not be good news. When the orthopedic doctor arrived, he explained that Aaron's CT scans were meant to take pictures of his digestive system, but one of those pictures just happened to capture

an image of Aaron's hip bones, and the picture showed there was something very wrong with both of Aaron's hips. The doctor said Aaron had something called a vascular necrosis, which meant that the blood supply to Aaron's hip bones was being cut off. As a result, his bones were literally dying. But the doctor didn't know why. Aaron was already so overwhelmed with his Crohn's flare-up that he couldn't really wrap his mind around this new health problem. He just felt emotionally numb from all the bad news. And once the doctor left, Aaron had no one to help him understand what it meant for him and his future. The next day, a different orthopedic doctor came into the room to discuss Aaron's diagnosis in

more detail. And this doctor asked Aaron if he'd been on steroids recently, because long-term high doses of steroids were one of the most common causes of avascular necrosis. And Aaron said, no, not really. He'd taken a low dose of a steroid called prednisone when he was first diagnosed with Crohn's disease, but that was over a year ago. The doctor said he'd never seen someone develop avascular necrosis from such a low dose of steroids, but it was possible that Aaron's body just had a very unusual reaction to prednisone. But regardless of what was causing it, the doctor recommended that Aaron follow up with an orthopedic surgeon about his hips whenever he got out of the hospital.

Now, at the time, Aaron was under so much stress between college and trying to manage his Crohn's flare-up that he didn't connect the avascular necrosis with his long history of broken bones and joint dislocations. Instead, it just felt like one more medical problem that he would have to worry about. Two years later, Aaron, who was now 20 years old, reviewed his most recent x-ray results with the same orthopedic doctor who'd previously diagnosed him with avascular necrosis. And shortly after that diagnosis, Aaron had met with a surgeon to see if he would need surgery on his hips.

But that surgeon had told him that his hips weren't really that bad and that his avascular necrosis was still in the very early stages. So all they needed to do now was just monitor his joints. But that was two years ago, and in the last few months, Aaron had noticed his hips getting a lot worse. It hurt to walk, and running was totally out of the question, so Aaron had made an appointment with the orthopedic doctor. And now, looking at Aaron's x-ray, the doctor said Aaron was correct to be worried. His avascular necrosis had definitely worsened over the last

couple of years. It had been stage 1 out of 4, but now it was more like stage 3. The doctor told Aaron that some patients whose hips were as badly damaged as Aaron's were would consider getting a double hip replacement surgery. However, those patients tended to be much older than Aaron, and so before taking such a drastic step as doing a double hip replacement, the doctor suggested that Aaron consider a less extreme surgery called core decompression. This would involve drilling into each of Aaron's hips, purposely damaging the remaining bones, in the hopes that this would stimulate blood flow and his bones would grow back stronger. The doctor was honest with Aaron and said this surgery does not really have a high success rate, but it was worth trying before a surgeon replaced

his hips altogether. Aaron could not believe that taking a short course of steroids years ago had potentially led to this. It just didn't seem right. But he understood what his doctor was saying and he trusted his doctor. So he went ahead and scheduled the less extreme operation for that summer, right after his college semester was going to be over. Three months after the core decompression surgery, Aaron met with a surgeon to go over the results of a follow-up CT scan. The truth was, Aaron already knew that he was not making much progress post-surgery. He'd spent the last 12 weeks stuck in a recliner in his grandparents' living room, bored out of his mind. The only bright spots in his summer had been visits from

his girlfriend, Emily. She'd recently finished school to become a barber and had started working full-time, and so she had plenty of crazy stories she'd heard to tell Aaron while he was stuck in that recliner. Aaron knew that at this point, three months after that operation, he should have been up and walking. But he was still in so much pain that he couldn't even put weight on his right leg.

He didn't feel like the surgery had helped him at all. If anything, it had made his hip feel worse. And now the surgeon basically confirmed what Aaron already knew. The CT scan showed that his body was not rebuilding new healthy bone

like they'd hoped. Instead, his hip was just continuing to die. Now they really only had one option left. Aaron was 20 years old and he needed a full-blown double hip replacement. If he didn't, his mobility would continue to decline and his pain would only get worse. The surgeon told Aaron that, you know, even though it was very unusual to perform a hip replacement on someone his age,

the surgery was statistically very likely to succeed. If they were able to go in and replace his dying hip bones with artificial ones, then his avascular necrosis would be cured and his problems should be solved. The only downside was each surgery, meaning each hip surgery, left and right, would have to be done separately, and it would take Aaron close to a year to fully recover from both. Aaron hated the idea of an entire year of recovery. It meant he would have to take the next two semesters off of school,

which he really didn't want to do, and he would have to spend more time stuck in that recliner. But Aaron was practically stuck in that recliner already since he couldn't walk because of his dying hips, so he knew he really had to do this. In December of 2012, Aaron used a walker to slowly shuffle down the hallway of the hospital's joint replacement floor. A few days earlier, he'd undergone his second hip replacement, and even though all he wanted to do was lay in bed and rest,

hospital staff required him to get up and go to group physical therapy. So Aaron slowly and painfully made his way into a room with the other joint replacement patients, who were all in their 60s, 70s, and 80s. One of the other patients looked at Aaron as he came in and just said, you're really young. And Aaron replied, yeah, I am, but I'm here. He managed to say it with a smile, because even though this was one of the most challenging things he'd ever been through, overall, things in Aaron's life weren't all that bad.

Just a few days before his surgery, he'd proposed to his girlfriend, Emily, and she'd said yes. So despite all the negatives in his life, the surgeries and the physical therapy and being the youngest patient on the joint replacement floor, Aaron still had reasons to be hopeful. With the help of a physical therapist, Aaron pushed his way through a series of painful hip exercises.

And the whole time, he just looked forward to the day that he'd be healthy enough to stand up and meet Emily at the altar. In the Pacific Ocean, halfway between Peru and New Zealand, lies a tiny volcanic island. It's a little-known British territory called Pitcairn. And it harboured a deep, dark scandal. There wouldn't be a girl called Pitcairn and it harboured a deep, dark scandal.

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Buy it now. Stream free on Freeview and Prime Video. A little over three years later, on a weekend evening in early 2016, Aaron was lying in bed at home with the TV on. He could hear his wife, Emily, walking around in the living room, and Aaron smiled, because it still felt special to think of Emily as his wife.

They'd gotten married in late 2013, once Aaron had recovered from his hip surgeries. Since then, he'd finished his bachelor's degree in biology and began a master's program in biomedical research. He was actually working on a research project about Crohn's disease, a disorder that he still had to manage in his day-to-day life. But overall, Aaron's health was in a good place, and he was grateful for that. Aaron looked up at the TV and then began looking around the room for the remote, so he could change the channel. He saw the remote on the other side of the room,

so he went to get out of his bed, and as he did, suddenly he felt the searing pain shoot through his right hip. It was the most excruciating pain he'd ever felt in his life, and he'd felt a lot of pain, worse than all of his broken bones in his surgeries. And as he's feeling this horrific pain, he tried to move his leg, but he couldn't. Aaron called out for Emily, and she rushed into the room and asked what was going on. Aaron said he couldn't move his leg leg and he thought something was seriously wrong. Emily tried to help him shift in bed and sit up, but he couldn't.

It hurt way too much. Aaron knew he needed to get to a hospital and fast, but he couldn't walk and Emily couldn't carry him. So he called a friend that lived a few blocks away and 20 minutes later, the friend showed up, lifted Aaron out of his bed, and carried him out to the car, and then rushed Aaron and Emily both to the hospital. When they got there, Aaron underwent the usual x-ray and CT scan, which he was very used to by this point, and then

afterwards, while Aaron was lying in a hospital room and holding Emily's hand, a member of the ER staff came in and told Aaron that the reason he had felt that horrible pain was that his hip joint was partially dislocated. It took an entire team of people to pop Aaron's hip back into the socket. He felt them grab his leg and push it hard, then he felt a white-hot flash of pain, and then finally some relief. His hip was still sore, but that searing pain he had felt was gone. Aaron was released from the hospital that same night, but he still felt very uneasy. His hip should not have just popped out of place for no reason, and he was worried something was

wrong with the artificial joints he'd received during his hip replacement surgeries. So, he planned to call his surgeon first thing Monday morning. On Monday, Aaron made that phone call, only to learn that his hip surgeon had moved out of state. Aaron called around to a few different clinics, but he couldn't get in to see another hip surgeon for at least two weeks. In the meantime, he went to an urgent care center where he got a hip brace and a pair of crutches just to get him through the long wait to see a doctor.

He went to school in this condition, and one of his biomedical science professors, who was also a medical doctor, was shocked that Aaron had dislocated his hip doing something as simple as getting out of bed. And Aaron couldn't really explain it either, except to say, yeah, that's just what happened. When Aaron was finally able to see a hip surgeon, he got even more bad news. The surgeon went over his medical history, CT scans, and most recent x-rays and told Aaron that, unfortunately, the problems with his hip bones had not been solved after all. That was because, even though both of Aaron's hips had been totally replaced with artificial joints, the bones around those artificial joints had continued to weaken. So at this point, the bones in Aaron's legs and pelvis were so weak that they couldn't hold artificial joints in place anymore. And that's why his right hip had dislocated.

And unfortunately, the surgeon said that the only way to fix this issue was for Aaron to undergo another double hip replacement, so they could switch out the artificial joints for bigger ones that would hopefully stay in place better. Aaron was so overwhelmed by this gloomy outlook that he kind of just went numb. So in the moment, he just told the surgeon, okay, yeah, we'll do whatever we have to do. But once he finished the appointment and got out to his car, the reality of his broken body

hit him like a ton of bricks. He thought this problem with his hips was fixed. He'd gone through two operations and a year of recovery thinking he'd be cured, but he wasn't. Now he needed two more major surgeries, which would mean more pain and more recovery time. And Aaron didn't even know

if all the suffering would help him in the long term. If his first hip replacements only lasted a few years, how did he know these ones wouldn't fail on him eventually too? Aaron started crying in his car so hard that he couldn't even see well enough to drive. So he just sat there sobbing in the parking lot for 20 minutes until he finally decided to call his wife. And Emily was as calm and comforting as ever. She told Aaron it was going to be okay and that no matter what, they were going to get through this. She managed to talk him down enough that he could drive his car,

but Aaron didn't go home. He had class that day, so he went straight to school. In April of 2016, 24-year-old Aaron laid in a hospital bed after his third hip replacement. After he'd learned that he would need even more surgery, he had rushed to finish his semester in grad school early, and he'd been so stressed that he didn't really have time to think. But now that the surgery was over, he had to stay in the hospital for around a week. So for the first time in months, Aaron didn't have anything to do except lay there and reflect on the health struggles that had shaped his life. By this point, Aaron was only about a year away

from earning his master's degree in biomedical research, so he knew a lot about the human body. He knew that it was not normal for kids to wake up with their shoulder dislocated like he'd done so many times. He knew that minor falls like the one he'd taken as a kid should not have led to a shattered wrist and a broken nose. And he knew that a small dose of steroids when he was 17 should not have led to him needing four hip replacements by the age of 24. Aaron just had this gut feeling that something more was going on with him, something that all of his doctors up to this point had missed. Aaron knew himself better than any doctor could, and he felt like he had the skills

and knowledge to figure this out. So he took out his phone and started Googling. Six months later, in October of 2016, Aaron stood next to the printer in his college library, watching it spit out sheet after sheet of paper. Aaron had undergone his fourth hip replacement surgery in July, and now he'd recovered enough that he could get around campus on his own. He was working tirelessly to finish his master's degree because he refused to let his health problems get in the way of his education again. Over the past six months, he'd tracked down

all of his available medical records. He'd found a lot online, but he'd also gone to a bunch of the hospitals and clinics in person so he could get the records that weren't available electronically. Then he'd gone over these documents with a fine-toothed comb, and he'd noticed something. Something that he thought might be able to explain the bizarre symptoms he'd experienced since he was a child. Aaron had access to a lot of scientific research papers through his school,

and he took full advantage of it. He'd sifted through countless articles until he found some that talked about an incredibly rare genetic disorder that was associated with the exact thing he'd noticed in his medical records. The symptoms for this disorder pretty much exactly matched Aaron's. Being born with bowed legs, frequent joint dislocation, weak bones, and even a vascular necrosis. It all added up. But at the same time, Aaron didn't want to get his hopes up about a potential diagnosis

and then be disappointed if he was wrong. So he kept his expectations low. The printer spit out one final piece of paper, and Aaron grabbed the stack of research articles that he'd printed. He was going to take these articles, along with all the medical records he'd gathered, to his primary care physician for a second opinion. That same month, Aaron sat inside of an exam room at his primary care physician's office. When the doctor came inside, Aaron handed him the thick stack of papers he'd printed out and said, look, I think I finally found something that makes sense.

The doctor began to look over the documents, and he admitted he'd never even heard of this disorder before, but he agreed the symptoms were a very close match to Aaron's. So, the doctor referred Aaron to a geneticist who might be able to finally, officially diagnose him. After many appointments with this geneticist and several months of testing, Aaron finally got a call in August 2017 confirming that his self-diagnosis was correct. And it was all because of that tiny detail that all the doctors had overlooked until Aaron pointed it out. When Aaron had scanned through his medical records, he realized that for his entire life,

he'd had remarkably low levels of a crucial enzyme called alkaline phosphatase. Now, this didn't really raise any red flags for the doctors who treated him, because usually, medical professionals are trained to worry about high alkaline phosphatase levels, not low levels like Aaron's, which is why nobody could correctly diagnose him. But when Aaron began looking into it himself, he learned that low alkaline phosphatase levels were associated with an extremely rare genetic condition called hypophosphatasia. Hypophosphatasia occurs when a person's body cannot make alkaline phosphatase properly. Without this critical enzyme, their bones can't absorb essential minerals like calcium,

so their skeleton becomes increasingly brittle. This is what caused all of Aaron's bones to break, his joints to dislocate, and his hips to begin dying. A single missing enzyme had caused Aaron a lifetime of pain and suffering. Once Aaron got his official diagnosis, he found a doctor in Tennessee who specialized in treating hypophosphatasia. Aaron now takes an enzyme replacement injection six times a week, which also costs his insurance company over a million dollars a year. While Aaron still has complications due to the skeletal damage he suffered before being diagnosed, this million-dollar treatment has strengthened his bones enough that he has increased mobility and hasn't broken a bone in many years.

Aaron and his wife Emily now have three kids together and live a relatively normal life, thanks to Aaron's persistence and Emily's loving care. And these days, Aaron says his wife treats him like a normal husband rather than a patient. After one recent surgery, she told him, and I quote, I'm sorry if I act like this is too normal, but we've got kids. I need you to at least hold a baby for a minute.

End quote. 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 Karis Allen Pash Cooper. Our editor is Heather Dundas. Sound design is by Matthew Cilelli. Our senior managing producer is Nick Ryan.

And our coordinating producer is Taylor Sniffen. Our senior producer is Alex Benidon. Our associate producers and researchers are Sarah Bytack and Tasia Palaconda. Fact-checking was done by Sheila Patterson. For Ballin Studios, our head of production is Zach Levitt. 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

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