WEBVTT - Case #05: Kyle 0:00:01.800 --> 0:00:04.600 We knew there was a mass, but we didn't know 0:00:04.680 --> 0:00:08.239 if it was but I as a cancer. There was 0:00:08.320 --> 0:00:13.600 just so much we didn't know. Persistent pain is something 0:00:13.640 --> 0:00:17.240 that we really see a lot. They tend to accumulate 0:00:17.320 --> 0:00:20.000 so many injuries and have so much pain that the 0:00:20.079 --> 0:00:25.360 nervous system itself starts to become part of the problem. 0:00:25.360 --> 0:00:28.120 It was so hard to be anything other than my 0:00:28.360 --> 0:00:32.640 medical conditions. It almost just felt like I was. I 0:00:32.680 --> 0:00:36.920 wasn't living, I was just essentially existing. I was existing 0:00:36.960 --> 0:00:47.440 to find out why this was happening to me. How 0:00:47.720 --> 0:00:51.559 terrifying would it be to fight an unknown enemy, one 0:00:51.640 --> 0:00:55.400 you didn't recognize and didn't see coming. What if that 0:00:55.520 --> 0:00:59.800 enemy was coming from within a disease that even doctor 0:01:00.040 --> 0:01:05.319 couldn't identify. Nearly half of all Americans suffer from some 0:01:05.520 --> 0:01:11.360 chronic illness, and many struggle for an accurate diagnosis. These 0:01:11.480 --> 0:01:17.760 are their stories. I'm Lauren Bright, the checko, and this 0:01:18.040 --> 0:01:34.480 is symptomatic. Kyle Thompson grew up in rural Georgia, an adventurous, 0:01:34.520 --> 0:01:37.720 active kid, playing any sports. His parents would let him 0:01:37.720 --> 0:01:43.319 try football, basketball, baseball, and acrobatic tumbling, while also diving 0:01:43.360 --> 0:01:48.200 into the world of video games. I'm big into Overwatch. 0:01:48.320 --> 0:01:50.760 That's probably one of my favorite games. Overwatch, and there's 0:01:51.080 --> 0:01:54.520 Rindescape and Rust are a couple of the ones that 0:01:54.560 --> 0:01:56.360 I play. And then of course, like you know, there's 0:01:56.400 --> 0:02:00.000 like Terraria, Minecraft, just a lot of those games passed. 0:02:00.000 --> 0:02:02.080 The phobia is really funny like that one. So if 0:02:02.080 --> 0:02:04.520 you've heard it, heard about any of those, oh yeah, 0:02:04.800 --> 0:02:08.640 big Mindcraft Household was huge. Minecraft. I think it's kind 0:02:08.680 --> 0:02:14.640 of like a progression from Legos. Oh absolutely absolutely. What 0:02:15.000 --> 0:02:19.200 kinds of things did Kyle loved to do? Oh? So 0:02:19.320 --> 0:02:22.400 he was always on the move. Um, we're pretty proud 0:02:22.440 --> 0:02:26.560 he's we kept him alive this Um. He was just 0:02:26.639 --> 0:02:30.000 a go getter. If he had to be sitting still, 0:02:30.080 --> 0:02:35.840 he was not happy. That was Laura Thompson, Kyle's mom. 0:02:35.880 --> 0:02:39.000 I was a an energy ball. That's how my mom 0:02:39.000 --> 0:02:43.400 would describe me. I was constantly wanting to run around 0:02:43.840 --> 0:02:47.080 or just follow people and just run and just do 0:02:47.160 --> 0:02:50.240 whatever I could get my hands on. He was just 0:02:50.360 --> 0:02:53.320 busy and active, and as soon as he was old 0:02:53.440 --> 0:02:56.600 enough he started playing sports. At age four, he started 0:02:56.600 --> 0:03:00.720 playing baseball. As soon as Kyle's ordered to play more 0:03:00.760 --> 0:03:05.119 competitive sports, the injuries started to rack up. I would 0:03:05.200 --> 0:03:08.679 constantly come back inside from playing outside and I would 0:03:08.720 --> 0:03:12.440 have a bunch of cuts and bruises and weird just 0:03:12.639 --> 0:03:14.880 injuries and little stuff like that. And you know, I 0:03:14.960 --> 0:03:17.120 was always just told, oh, you're an active child. You know, 0:03:17.160 --> 0:03:19.239 it's just because he's a boy, or he's very active 0:03:19.240 --> 0:03:23.480 when he's outside. What seems like normal active kid injuries 0:03:23.919 --> 0:03:26.880 was actually the start of a really long journey of 0:03:27.000 --> 0:03:30.960 symptoms and multi decade battle for Kyle to find a 0:03:31.000 --> 0:03:35.360 diagnosis for what was plaguing him. I actually have a 0:03:35.360 --> 0:03:38.320 picture of him with a cast on one leg and 0:03:38.680 --> 0:03:41.640 a walking boot on the other leg, and he was 0:03:42.160 --> 0:03:46.120 insisted on still playing catcher in baseball because he didn't 0:03:46.120 --> 0:03:48.760 have to move. So it's a pretty funny picture, but 0:03:48.800 --> 0:03:51.240 that was him. He just loved it, so he did. 0:03:51.280 --> 0:03:55.040 He just he just pushed through. Kyle was in and 0:03:55.080 --> 0:03:59.160 out of the hospital constantly. Injuries that wouldn't be too 0:03:59.160 --> 0:04:02.360 difficult for most people to brush off seemed to land 0:04:02.440 --> 0:04:05.760 him back in the r There was this one time 0:04:05.920 --> 0:04:08.760 where I was walking in a forest with my brother 0:04:08.840 --> 0:04:10.920 and we were just hiking through the woods being kids, 0:04:11.760 --> 0:04:14.000 and I stepped in a small hole in the woods. 0:04:15.120 --> 0:04:17.720 I broke my foot. I completely like shattered my entire 0:04:17.760 --> 0:04:20.680 foot because I stepped in a hole wrong. He was 0:04:20.760 --> 0:04:23.919 literally sitting on a bike and he just popped the 0:04:24.000 --> 0:04:27.040 handlebars up and the radius bone in his arm broken two. 0:04:27.960 --> 0:04:30.159 So he walked home and he just I saw his 0:04:30.279 --> 0:04:33.599 arm and I said, let's go. You know, the doctor said, 0:04:33.600 --> 0:04:37.440 bones just don't break like that the whole the bike. 0:04:37.960 --> 0:04:42.240 Seeing her son's ongoing suffering, Laura had her mother's intuition 0:04:42.400 --> 0:04:46.120 tangling that something was off. It couldn't just be that 0:04:46.200 --> 0:04:51.159 her kid was unmucky. As a mom, I questioned all 0:04:51.240 --> 0:04:53.880 the time, should we be checking his bones? Is there 0:04:54.040 --> 0:04:56.479 something wrong? I don't feel like he should be hurt 0:04:56.560 --> 0:05:00.720 this much. And I heard over and over again, he's 0:05:00.800 --> 0:05:03.560 just got bad luck. He's just clumsy. He needs to 0:05:03.600 --> 0:05:07.200 be more careful. But it was just the littlest stuff 0:05:08.600 --> 0:05:12.640 ended up being such big injuries. So you just had 0:05:12.720 --> 0:05:16.600 your mother's instinct and this nagging fear that something deeper 0:05:16.720 --> 0:05:20.960 was going on. Most of his life I did. I 0:05:21.040 --> 0:05:23.680 felt like something was just wrong. You know, he had 0:05:23.760 --> 0:05:26.599 so many friends and none of them were going to 0:05:26.640 --> 0:05:29.240 the e R like this many times. I mean, I 0:05:29.320 --> 0:05:31.880 know other kids were injured, but it was to the 0:05:31.960 --> 0:05:34.400 point where it was like something just is not right. 0:05:35.400 --> 0:05:38.760 That's how I felt. It felt like Kyle couldn't go 0:05:38.800 --> 0:05:41.080 more than two months before heading back to the e 0:05:41.320 --> 0:05:45.599 R with another break or sprain. Each time, the doctors 0:05:45.640 --> 0:05:48.440 chalked it up to growth plate fractures as part of 0:05:48.520 --> 0:05:53.400 Kyle's teenage growth spurts. How many bones did he break? Like? 0:05:53.480 --> 0:06:00.920 How frequently was he injured? Oh my goodness, I would 0:06:01.279 --> 0:06:05.280 have to sit and count how many either braces or 0:06:05.600 --> 0:06:14.360 casts or oh goodness, there has to be over twenty, 0:06:14.400 --> 0:06:19.920 easily twenty. And then when he he his ankle pain 0:06:20.040 --> 0:06:24.640 just became horrific. All of these injuries made Kyle's middle 0:06:24.680 --> 0:06:29.039 school and early high school years extremely difficult. He always 0:06:29.080 --> 0:06:32.120 seemed to be in a cast, a walking boot, on crutches, 0:06:32.640 --> 0:06:35.280 or all three. It got in the way of him 0:06:35.279 --> 0:06:37.600 being able to just go to lunch without needing the 0:06:37.640 --> 0:06:42.359 help of a friend to carry his lunch tray. He 0:06:42.480 --> 0:06:45.680 was teased a lot. I think I tried to protect 0:06:45.760 --> 0:06:48.600 him from some of that. Kids would call him stormtrooper 0:06:49.640 --> 0:06:54.120 just things like that, and they would make fun of him. 0:06:54.160 --> 0:06:58.159 I can't imagine, particularly given you know your desire to 0:06:58.240 --> 0:07:02.760 be active how difficult that must have been psychologically on you. 0:07:03.240 --> 0:07:05.880 Oh my gosh. Yeah, Like all I ever wanted to 0:07:05.920 --> 0:07:09.320 do was play sports or just hang out with my 0:07:09.360 --> 0:07:12.280 friends and just like skateboarding activities or go biking and 0:07:12.320 --> 0:07:14.040 just things like that. It always felt like I was 0:07:14.440 --> 0:07:16.680 held back by my injuries, which is like such a 0:07:16.800 --> 0:07:21.239 terrible experience because when it comes to injuries, the normal 0:07:21.280 --> 0:07:24.760 person goes through a broken arm once in their life 0:07:24.840 --> 0:07:27.520 or something like that. And to go through constant breaking 0:07:27.600 --> 0:07:30.480 of bones and dealing with physical therapy and going to 0:07:30.520 --> 0:07:33.760 the doctors, it was very isolating, and obviously, at the 0:07:33.760 --> 0:07:36.320 age of fourteen, no one around me understood what I 0:07:36.360 --> 0:07:38.360 was going through. So it's not like I could turn 0:07:38.400 --> 0:07:40.680 to my friends or turn to anyone around me. It 0:07:40.720 --> 0:07:43.680 was it was only myself, you know, going through these things. 0:07:43.680 --> 0:07:46.080 So it was really tough on my mental health for sure. 0:07:47.280 --> 0:07:51.160 Relentless teasing from kids who couldn't comprehend Kyle's suffering and 0:07:51.240 --> 0:07:55.640 frustration with his own situation. His body physically could not 0:07:55.840 --> 0:07:59.480 keep up with his desire to do just everyday kid things. 0:08:00.040 --> 0:08:02.840 On top of the frequent injuries, there was also a 0:08:02.960 --> 0:08:08.360 chronic lingering pain. When you talk about the injuries that 0:08:08.440 --> 0:08:12.120 you had. Were you also experiencing ongoing pain? And how 0:08:12.160 --> 0:08:15.559 would you describe that kind of pain to me? Yeah? 0:08:15.760 --> 0:08:19.640 So I dealt with what I would just call it 0:08:19.680 --> 0:08:22.400 as a child, as I was having weird pain. If 0:08:22.440 --> 0:08:24.480 I were to describe it to anyone, it would be 0:08:24.520 --> 0:08:27.040 so difficult because it was so uncomparable to the normal 0:08:27.080 --> 0:08:31.320 pain that kind of anyone experiences. My bones were literally aching. 0:08:32.080 --> 0:08:34.640 I mean I would lie awake in bed just struggling. 0:08:34.840 --> 0:08:39.040 It was awful to do with this underlying chronic pain 0:08:39.440 --> 0:08:43.200 was ignored as the doctors focused on the individual injuries 0:08:43.200 --> 0:08:46.440 in front of them each time, Fix this sprain, fix 0:08:46.520 --> 0:08:50.200 this break, all without seeing the dots connecting each of 0:08:50.240 --> 0:08:55.160 these events together. Like why isn't he healing? Right? I questioned? 0:08:55.520 --> 0:08:58.240 You know a lot, but it just didn't get me anywhere. 0:08:58.280 --> 0:09:00.960 I couldn't the doctor. Would we take him in for 0:09:01.000 --> 0:09:04.080 an injury and they would focus on that injury if 0:09:04.120 --> 0:09:06.840 they didn't look at the whole picture, and they didn't 0:09:06.920 --> 0:09:09.320 look at even his former injuries and things like that 0:09:09.360 --> 0:09:12.640 and put it together as a big picture. Laura was 0:09:12.720 --> 0:09:16.320 constantly told it was just bad luck, or that she 0:09:16.360 --> 0:09:20.120 should wrap Kyle in bubble wrap. The guilt of feeling 0:09:20.160 --> 0:09:23.400 like a bad parents started to creep in. She and 0:09:23.480 --> 0:09:27.400 Kyle continued their search for answers. Kyle was prescribed accutane 0:09:27.520 --> 0:09:32.359 for his severe acne, which appeared to trigger new debilitating symptoms, 0:09:32.720 --> 0:09:37.480 symptoms that shed new light on what was potentially attacking him. 0:09:37.520 --> 0:09:40.520 I turned sixteen and I was dealing with a lot 0:09:40.559 --> 0:09:44.560 of acne, and so I started on a medication called acutane, 0:09:44.640 --> 0:09:46.800 which has a lot of serious side effects. It's a 0:09:46.800 --> 0:09:51.440 really strong medication, and I had pretty much all of 0:09:51.440 --> 0:09:53.480 the red flag symptoms, the ones that are like you 0:09:53.520 --> 0:09:56.640 need to stop the medication, called your doctor and all this. 0:09:57.120 --> 0:10:00.920 And I was experiencing blackouts. So I went stand up 0:10:00.960 --> 0:10:03.040 after sitting down for a little bit, and I would 0:10:03.040 --> 0:10:04.760 lose my vision and I would feel like I was 0:10:04.800 --> 0:10:06.120 going to pass out, so I would kind of like 0:10:06.160 --> 0:10:09.120 stumble and fall to the ground. And at that point 0:10:09.200 --> 0:10:11.080 we were like, okay, so something serious is going on. 0:10:11.400 --> 0:10:16.040 It was sent to a pediatric cardiologist who ultimately diagnosed 0:10:16.040 --> 0:10:23.599 me with postural orthostatic tachycardia syndrome POTS. POTS. Postural orthostatic 0:10:23.640 --> 0:10:27.880 tachycardia syndrome, also known as POTS, is an abnormal increase 0:10:27.880 --> 0:10:30.720 in heart rate that occurs after sitting up or standing. 0:10:32.000 --> 0:10:36.079 So that was my first kind of true diagnosis. But 0:10:36.520 --> 0:10:39.760 you know, it didn't really leave me with any real answers. 0:10:39.800 --> 0:10:41.840 It still had nothing to do with any of my injuries. 0:10:43.200 --> 0:10:47.000 It did not help with my worries of all of 0:10:47.040 --> 0:10:52.520 his injuries because they were very not related. That diagnosis, 0:10:53.280 --> 0:10:57.040 when you initially were given it, did that make you 0:10:57.160 --> 0:11:02.040 hopeful that now you had coping mechanisms to deal with it, 0:11:02.120 --> 0:11:09.000 that things were going to change. Honestly, no, it felt validating, 0:11:09.000 --> 0:11:14.640 of course for a couple of reasons, but ultimately it 0:11:14.679 --> 0:11:17.280 was a very small piece of the puzzle and it 0:11:17.360 --> 0:11:21.640 was probably the least important one. It really felt like 0:11:21.679 --> 0:11:24.280 a small victory. And of course I I still appreciate 0:11:24.280 --> 0:11:27.840 the fact everything that my cardiologists did, but it wasn't enough. 0:11:28.360 --> 0:11:31.080 I Kyle. I have to say my heart kind of 0:11:31.120 --> 0:11:34.400 breaks for sixteen year old Kyle because you're going through 0:11:34.440 --> 0:11:38.240 all of that and then you're dealing with acne, which 0:11:39.160 --> 0:11:42.560 I know lots of teenagers deal with, but when you're 0:11:42.559 --> 0:11:44.320 dealing with it to the point that you feel you 0:11:44.480 --> 0:11:47.400 have no other choice but to go on accutane, you 0:11:47.600 --> 0:11:52.079 just must have felt like you were getting bombarded on 0:11:52.200 --> 0:11:56.920 every single front in terms of your health. Yeah, it 0:11:57.040 --> 0:11:59.839 was so hard to be anything other than my my 0:12:00.120 --> 0:12:03.640 coal conditions or my symptoms. It was so I'm not 0:12:03.679 --> 0:12:05.760 even sure if I could describe it well. It it 0:12:05.800 --> 0:12:09.800 almost just felt like I was I wasn't living, I 0:12:09.880 --> 0:12:13.800 was just essentially existing. I was existing to find out 0:12:14.280 --> 0:12:17.480 why this was happening to me. You must have felt 0:12:17.559 --> 0:12:23.600 so isolated. It became so overwhelming. It showed everyone noticed it, 0:12:23.679 --> 0:12:27.679 my my parents, my my brother, my friends. It led 0:12:27.720 --> 0:12:33.040 to challenges in my relationships around me. I just lost it. 0:12:33.040 --> 0:12:35.520 It was just too much to handle, and so I 0:12:35.520 --> 0:12:37.559 had to kind of like take a break from everything. 0:12:38.840 --> 0:12:40.719 He's just has had a lot to deal with, all 0:12:40.720 --> 0:12:43.439 the injuries and everything, and it just even made getting 0:12:43.480 --> 0:12:47.520 around school hard. So I think he just got to 0:12:47.559 --> 0:12:51.199 a point where he just needed a break. I had 0:12:51.240 --> 0:12:53.800 to stop. I was having daily panic attacks at school. 0:12:54.400 --> 0:12:56.760 It felt impossible. I felt like I was against an 0:12:56.760 --> 0:13:00.480 impossible battle, and ultimately I had to I had to 0:13:00.559 --> 0:13:03.240 just sort it out at home, and so online school 0:13:04.080 --> 0:13:08.679 was my next best option. Life started to become a 0:13:08.720 --> 0:13:12.080 little easier when Kyle switched to online home school. His 0:13:12.160 --> 0:13:15.200 flare ups became more manageable, and he found a little 0:13:15.240 --> 0:13:18.840 bit of normalcy and happiness when he started taking acrobatic 0:13:18.880 --> 0:13:25.880 tumbling classes from sixteen to nineteen, I stopped having those 0:13:26.200 --> 0:13:29.760 strange growth play issues. We assume that they had closed. 0:13:29.960 --> 0:13:32.680 So I was doing much better in terms of you know, 0:13:32.800 --> 0:13:34.480 at least I was only breaking my ankle once a 0:13:34.559 --> 0:13:37.720 year instead of like six times a year. When he 0:13:37.800 --> 0:13:42.160 tried tumbling. I've never seen him more happy. He just 0:13:42.440 --> 0:13:44.880 that was his favorite thing in the world. To see 0:13:44.960 --> 0:13:48.040 him in a place where he just is so happy 0:13:48.120 --> 0:13:51.000 and loves it. That's what you want for your kids. 0:13:51.000 --> 0:13:53.679 And I thought, oh, maybe this, maybe he'll be able 0:13:53.720 --> 0:13:56.320 to do this without so many injuries. And he was 0:13:56.600 --> 0:14:02.679 also exceptionally flexible. Oh absolutely, yeah. So with every injury 0:14:02.720 --> 0:14:05.480 that you know, of course, they always prescribed physical therapy 0:14:05.520 --> 0:14:08.280 and things like that. In the physical therapist could go, well, 0:14:08.320 --> 0:14:10.000 you can already do all the things that I'm supposed 0:14:10.000 --> 0:14:12.600 to help you get to because he's so he was 0:14:12.679 --> 0:14:17.640 super flexible. Looking back at his recovery from injuries growing up, 0:14:18.080 --> 0:14:21.800 physical therapist often thought he didn't need much help rehabbing 0:14:21.920 --> 0:14:25.160 because he never had a problem with his range of motion. 0:14:25.760 --> 0:14:30.680 But everything changed. When Kyle was nineteen, he started experiencing 0:14:30.960 --> 0:14:34.160 really bad back pain and went to the chiropractor for 0:14:34.200 --> 0:14:41.360 some more treatment. That was really concerned and I, I 0:14:41.400 --> 0:14:43.560 believe I started seeing him for about a month or so, 0:14:43.920 --> 0:14:46.880 and there was this one time that he did his 0:14:46.920 --> 0:14:49.480 adjustments on me and I was like, oh my gosh, 0:14:49.520 --> 0:14:53.400 I feel so much better. Being the super active young 0:14:53.440 --> 0:14:57.400 man he was. Kyle went straight back to acrobatic tumbling 0:14:57.440 --> 0:15:00.280 practice after what he thought was that he a link 0:15:00.360 --> 0:15:05.320 chiropractor appointment, But after practice ended, he started to notice 0:15:05.320 --> 0:15:08.400 an odd sensation in his legs, almost as if they 0:15:08.400 --> 0:15:13.280 were really fatigued or heavy. Can you explain that fatigue? 0:15:13.320 --> 0:15:15.640 When you say it was like nothing you'd ever experienced before, 0:15:15.680 --> 0:15:19.680 how would you describe it to me? So I try 0:15:19.720 --> 0:15:23.640 to explain it. How it feels when you are maybe 0:15:23.640 --> 0:15:26.200 sitting on the floor in a strange position and your 0:15:26.360 --> 0:15:28.440 leg goes to sleep or your foot goes to sleep, 0:15:29.040 --> 0:15:31.200 and the feeling that you have when you stand up 0:15:31.640 --> 0:15:34.440 and some of that blood starts flowing back into your leg. 0:15:35.600 --> 0:15:38.680 It's that kind of numbness that you get. It's it's 0:15:38.720 --> 0:15:43.560 that strange tingling sensation and that was starting to happen 0:15:44.160 --> 0:15:47.040 in both of my legs, and it got to the 0:15:47.080 --> 0:15:49.720 point where I was just an excruciating pain. My lower 0:15:49.760 --> 0:15:52.440 back was just it felt like a knife was being 0:15:52.840 --> 0:15:56.320 jabbed into my spine. I told my parents like I was, like, 0:15:56.360 --> 0:15:59.680 there's something very wrong right now. I could just tell 0:15:59.720 --> 0:16:06.520 there was red flags everywhere. Kyle and Laura rushed to 0:16:06.640 --> 0:16:10.200 the hospital. The doctors took an X ray, but everything 0:16:10.200 --> 0:16:14.520 looked normal. Nothing on it seemed to explain his excruciating 0:16:14.600 --> 0:16:18.560 back pain. Was this tied to the symptoms that continued 0:16:18.600 --> 0:16:23.920 to accumulate or was this something new? It was definitely 0:16:23.960 --> 0:16:25.840 the some of the worst pain I had experienced, and 0:16:25.880 --> 0:16:30.000 it was nerve pain, which was a whole different sensation 0:16:30.120 --> 0:16:32.880 from the chronic pain or muscular skeletal pain which I 0:16:32.920 --> 0:16:35.920 had been experiencing. And the nerve pain was no joke. 0:16:36.040 --> 0:16:40.560 It was brutal on both the mind and bodies. It 0:16:40.640 --> 0:16:42.960 was just a lot. So I went and saw the 0:16:43.000 --> 0:16:46.000 spinal specialist who ordered an m r I and I 0:16:46.040 --> 0:16:48.520 had it the day of which is unheard of. Usually 0:16:48.520 --> 0:16:50.520 an m r I takes a couple of weeks to schedule. 0:16:51.240 --> 0:16:52.720 So I had the m r I that day. That 0:16:52.800 --> 0:16:55.920 I saw him and we're like, Okay, we'll get get 0:16:55.960 --> 0:16:59.160 some answers in a couple of weeks. But Kyle didn't 0:16:59.160 --> 0:17:01.080 have to wait a couple of weeks to find out 0:17:01.080 --> 0:17:05.160 the results. The doctor had a feeling that something was off, 0:17:05.600 --> 0:17:09.040 and luckily for Kyle, that doctor read the results the 0:17:09.080 --> 0:17:14.280 same night. They were terrifying. They walked up to my 0:17:14.400 --> 0:17:16.600 room and said that they had some bad news for me. 0:17:17.200 --> 0:17:20.080 I think my mom already started crying, and I was like, oh, ship, like, 0:17:20.160 --> 0:17:23.320 something is obviously very wrong. I thought I had maybe 0:17:23.480 --> 0:17:26.240 kind of fractured my spine or something, or I'd broken 0:17:26.240 --> 0:17:29.119 a vertebrate or something, and they said they found a 0:17:29.240 --> 0:17:35.159 large tumor in your spine, and I lost it. It 0:17:35.320 --> 0:17:38.960 was I didn't think it was real, and I didn't 0:17:38.960 --> 0:17:40.480 think it was a prank, but I was like, there's 0:17:40.520 --> 0:17:47.360 no way that this is happening to me. That night 0:17:47.520 --> 0:17:53.159 was one of the hardest nights I had gone through. So, 0:17:54.280 --> 0:18:02.240 oh my gosh, Kyle. Yeah, so I can imagine probably 0:18:02.280 --> 0:18:04.800 one of the most difficult things you and your husband 0:18:04.800 --> 0:18:08.080 had dealt with his parents was walking into his room 0:18:08.119 --> 0:18:15.400 and telling him that he had a tumor in his spine. Sorry, 0:18:17.040 --> 0:18:21.719 That was absolutely awful because we knew there was a 0:18:21.720 --> 0:18:25.600 mass We knew it was l ford S one in 0:18:25.680 --> 0:18:31.600 his spine, but we didn't know if it was you know, 0:18:31.720 --> 0:18:35.040 butinn is a cancer. There was just so much we 0:18:35.080 --> 0:18:44.000 didn't know. So that was a very hard conversation. I 0:18:44.000 --> 0:18:48.320 apologize no when he told me that, all I could 0:18:48.320 --> 0:18:52.040 think of was having to walk into the room and 0:18:52.600 --> 0:18:55.720 not having the answers that you want to desperately give 0:18:55.880 --> 0:19:00.160 your child in that moment. Yeah, just just because act 0:19:00.200 --> 0:19:03.240 of what you said, Because you know, as a parent 0:19:03.440 --> 0:19:05.960 and as a mom, you're supposed to be able to 0:19:06.000 --> 0:19:11.000 fix what's wrong, and to just come in with this information. 0:19:11.720 --> 0:19:14.600 It really wasn't until the next day that we met 0:19:14.600 --> 0:19:17.719 with a neurosurgeon that we really knew what we were 0:19:17.760 --> 0:19:21.440 dealing with, and that was that was Actually that conversation 0:19:21.560 --> 0:19:29.200 was fifty times harder. We'll be right back with Symptomatic, 0:19:29.640 --> 0:19:40.000 a Medical Mystery Podcast. Now back to Symptomatic, a Medical 0:19:40.080 --> 0:19:46.760 Mystery Podcast. Kyle Thompson had been suffering from a mysterious 0:19:46.840 --> 0:19:51.600 illness for almost two decades, countless breaks and sprains throughout 0:19:51.600 --> 0:19:54.480 his childhood. A rough fight with the side effects of 0:19:54.480 --> 0:19:58.960 accutane a diagnosis of POTS, which still left his worst 0:19:58.960 --> 0:20:03.280 symptoms on, explaining frustration that no one seemed to hear 0:20:03.320 --> 0:20:06.600 his full story or try to put together all the 0:20:06.680 --> 0:20:10.680 pieces in a way that made sense, and now doctors 0:20:10.680 --> 0:20:14.360 have pound of tumor on Kyle's spine. I was having 0:20:14.400 --> 0:20:16.720 the red flag symptoms of the numbness and the tingling 0:20:16.920 --> 0:20:20.359 and the pain. There was obviously some some serious stuff 0:20:20.400 --> 0:20:23.080 going on, and so I was pretty much rushed to 0:20:23.280 --> 0:20:27.879 the hospital and they got me into my room very quickly, 0:20:28.880 --> 0:20:33.520 and they told me that most likely the chiropractic adjustment 0:20:33.800 --> 0:20:37.280 caused the tumor to herniate, which means it started to 0:20:37.280 --> 0:20:41.800 bleed internally. Three days later, Kyle had surgery to remove 0:20:41.800 --> 0:20:45.679 the tumor. The tumor had intertwined itself so much with 0:20:45.720 --> 0:20:49.119 his spine that the doctors had to remove one third 0:20:49.160 --> 0:20:52.480 of his vertebrae with it. The doctors were luckily able 0:20:52.520 --> 0:20:55.800 to remove the entire tumor and found it was benign 0:20:56.320 --> 0:20:59.639 but had been growing rapidly. All of that was a 0:20:59.760 --> 0:21:02.240 huge which relief to Kyle and his mom, but a 0:21:02.320 --> 0:21:06.119 couple of weeks after surgery, something strange started to happen. 0:21:06.640 --> 0:21:11.040 They noticed a large bump forming at his incision. We 0:21:11.160 --> 0:21:16.080 noticed some weird fluid coming out of it, some clear fluid. 0:21:16.880 --> 0:21:19.639 We're like, what is happening. So we went to the 0:21:19.680 --> 0:21:23.199 doctor and he said, you have a cerebral spinal fluid leak. 0:21:23.280 --> 0:21:25.240 And so I was leaking spinal fluid out of my 0:21:25.240 --> 0:21:30.760 incision and I was having horrible headaches. Cerebral spinal fluid 0:21:30.800 --> 0:21:34.480 leak headaches are no joke. They're terrible, the worst head 0:21:34.480 --> 0:21:37.119 pain I had ever experienced. I couldn't even open my 0:21:37.160 --> 0:21:38.720 eyes while I was in bed, it was so much. 0:21:39.880 --> 0:21:43.000 Kyle had the spinal fluid drained, but the bump returned 0:21:43.119 --> 0:21:46.480 the next morning. He was now at his breaking point. 0:21:46.880 --> 0:21:49.959 Through all of his injuries as a kid, the pot symptoms, 0:21:50.320 --> 0:21:54.080 the scare with the tumor, and now these spinal fluid complications, 0:21:54.680 --> 0:21:57.680 it was adding up to be too much for him. 0:21:57.880 --> 0:22:04.119 I was done. I was mentally that was it. I 0:22:04.200 --> 0:22:06.720 kind of honestly just like gave up. And I didn't 0:22:06.720 --> 0:22:09.200 even want to I didn't want to go. I didn't 0:22:09.200 --> 0:22:11.720 want to deal with another issue because I knew that 0:22:12.280 --> 0:22:13.760 if the bump was back in the morning, I was 0:22:13.800 --> 0:22:17.479 gonna have to have surgery again. On the same area 0:22:17.880 --> 0:22:23.720 that I had been recently cut open into, which it 0:22:23.800 --> 0:22:27.120 was so mentally taxing to think about that again, think 0:22:27.160 --> 0:22:29.200 about the fact that the doctor had once again cut 0:22:29.240 --> 0:22:35.520 into an already damaged tissue. Was a very strange feeling, 0:22:36.680 --> 0:22:42.200 a roller coaster of emotions, symptoms, diagnosis and treatments, treatments 0:22:42.240 --> 0:22:46.080 that felt like they weren't making any significant progress. Even 0:22:46.080 --> 0:22:48.879 the successful surgery to remove the tumor in his spine 0:22:49.080 --> 0:22:54.119 left lasting side effects, leaking spinal fluid. But these lasting 0:22:54.119 --> 0:22:57.199 side effects turned out to be the key clue to 0:22:57.440 --> 0:23:00.520 finally finding out what had been plague and cart all 0:23:00.560 --> 0:23:07.000 these years. After the second surgery, my spinal surgeon came 0:23:07.040 --> 0:23:11.639 into the room after everything had healed, and he said 0:23:11.720 --> 0:23:17.479 I had extremely fragile skin and that he had only 0:23:17.520 --> 0:23:20.480 ever seen that in patients that get diagnosed with Eilish 0:23:20.560 --> 0:23:25.200 Danless syndrome. And I just went, oh my god, I 0:23:25.240 --> 0:23:27.400 mean I just got chills. I just had chills again. 0:23:28.160 --> 0:23:32.480 I was like, did you recognize something is wrong? And 0:23:32.640 --> 0:23:35.119 we were like, okay, what does that have to do 0:23:35.160 --> 0:23:40.600 with me? I don't we don't understand. And we started 0:23:40.840 --> 0:23:44.959 googling the condition, started learning more about what connective tissue 0:23:45.000 --> 0:23:49.120 meant all these things. And my mom and I just 0:23:50.400 --> 0:23:52.320 looked at each other when we were researching these things, 0:23:52.680 --> 0:23:56.040 and she's like, this is you like this, You are 0:23:56.119 --> 0:24:00.880 this condition. You are exactly every symptom that they mentioned, 0:24:01.000 --> 0:24:05.240 or or every feeling or all of the strange things 0:24:05.240 --> 0:24:09.000 that I experienced as a child. Kyle and Laura went 0:24:09.040 --> 0:24:13.040 to see a geneticist who gave them the official diagnosis 0:24:13.080 --> 0:24:17.120 of Eiler's damn those syndrome, also known as e d S. 0:24:18.280 --> 0:24:20.400 That must have been incredible, because it's like you've been 0:24:20.400 --> 0:24:25.200 looking at this puzzle for almost twenty years at that point. Yeah, 0:24:25.359 --> 0:24:26.920 you know, it's funny. It felt like one of those 0:24:27.080 --> 0:24:30.359 uh in those cheesy detective movies where they put the 0:24:30.960 --> 0:24:33.840 newspaper over something in the words match up or whatever. 0:24:34.040 --> 0:24:37.439 It felt like that. It was so at the beginning 0:24:37.520 --> 0:24:40.000 it was very validating, and then a couple of days later, 0:24:40.040 --> 0:24:41.720 I just thought it was comical because it was like, 0:24:41.760 --> 0:24:44.000 there's all these pieces just lined up and it it 0:24:44.240 --> 0:24:47.639 really just made sense. I just thought back and I 0:24:47.680 --> 0:24:50.240 was like, how did no one put this together? Like 0:24:51.080 --> 0:24:53.879 all the signs were there for decades and we just 0:24:53.920 --> 0:24:57.840 needed the one person to think outside the box and 0:24:58.400 --> 0:25:02.320 connect all of these weirds and them together. What is 0:25:02.359 --> 0:25:06.720 this diagnosis meant for you and for for Kyle, Well, 0:25:08.119 --> 0:25:11.479 it means at least we know. Not knowing was harder. 0:25:11.520 --> 0:25:16.040 I think it is a relief. You know there's no 0:25:16.160 --> 0:25:19.080 cure for either stand those there's things you can do, 0:25:20.000 --> 0:25:24.680 and that's good. But knowing that you're not just crazy 0:25:24.800 --> 0:25:27.480 and making things up, and sometimes I want to go 0:25:27.560 --> 0:25:31.280 back and say, you see you guys, you know, don't 0:25:31.280 --> 0:25:33.840 be so mean. You don't know what people are dealing with. 0:25:34.680 --> 0:25:38.720 So it's it's helped in a lot of ways a 0:25:38.840 --> 0:25:42.240