← The Medical Detectives
Loading summary
Transcript115 lines
- [00:00]
A
Foreign detective friends. It's Dr. Nance. I am thrilled to be bringing you this episode of two Ill friends who Met on Social media. And I cannot emphasize how important it is to find someone, whether it's in real life or whether it's online, to find someone who is going through the same exact things that you are going through. Because you will, after you hear this story, understand that there is so much power in finding that person, your person. Not just for relating and talking about things, but also in helping finding the right practitioner who can help you finding the right therapy that can help you finding out the information of how to fund all of this. So I can't wait for you guys to listen to this episode. Anna and I will be on the episode, but let's get on into it. Hello.
- [01:10]
B
Hello. Sasha and Neela. It's another episode with Double Trouble.
- [01:14]
C
Thank you for having us. I'm so excited to be here.
- [01:16]
D
Yeah. Thank you for having us.
- [01:18]
A
Thank you. And I think you guys are our first pair of friends on the show, which is amazing. It's always better to go through life with a friend who understands everything that you're going through. And I think, Nella, you are up first. Can you talk to us maybe about what life was like before anything started up for you?
- [01:40]
D
Yeah, of course. I have always been fairly active. Like, I've always dealt with kind of a bit of a weight problem my whole life, but I've always been an active person and I've always known that I could never really feel stretches in yoga, but it was never really a problem for me. I just thought that everyone felt that way. I never understood the point of yoga, for example, but it never kept me from being active. I found interest in CrossFit and running, and I was quite active with that even during the pandemic. I created a garage gym with CrossFit and I was running quite a bit outside. So that was the background before anything happened, really.
- [02:15]
B
When you say you couldn't feel stretches in yoga, like you physically couldn't feel them or it wasn't stretching you out?
- [02:21]
D
Yeah, I could do the movements and the positions without any problem. Not any super advanced yoga, but fairly basic yoga. And I never really felt muscles stretching. It was just like, oh, what's the point of this? Okay. I can static hold positions, but okay. In my 20s, I got into weightlifting and had a personal trainer for a little bit and then got into CrossFit because I wanted to feel feel something. And CrossFit helps you feel something. And it probably wasn't at the Best proper technique when you're doing it yourself. But I was still doing fine in early 2022. I hadn't been running actively over the winter. And then when the snow melted, I was like, okay, let's do this again. And I had some fitness from the weightlifting and other things that I was doing, and I probably overdid it because, like, whenever you go back into running after taking a break, you're supposed to start slow and then slowly ramp up your mileage. And I didn't really do that. I started running probably 10km a run right off the bat, and I ended up tripping over a curb. It didn't seem to be that big of a problem. I finished my run, but then that evening, it started getting worse and worse, and I was like, maybe there's something going on here. And it started to swell up, and it didn't look great, but it didn't look like a broken leg or anything. It was just mildly swollen. I went to see my doctor about it. He actually sent me to er. That's where I got the X rays, and nothing showed up. I could not walk myself out of the er. I was hobbling. I didn't have crutches or anything, but I just could not walk. But they told me that there's nothing wrong with me and just to go home, rest, ice, and it's just a minor sprain. Months and months passed that did not go away. I ended up going to see a bunch of different sports medicine doctors. I got an MRI of my ankle. Nobody could find anything. They just said, said, there's literally nothing wrong with you. We see that there's very mild swelling, but this doesn't seem to be associated with anything that makes sense to us. Eventually, 10 months later, this is a little bit like fast forwarding in the story. While things were degrading, I ended up seeing a podiatrist who told me that my ankle might be partially dislocated or slightly subluxed. And he asked me if he could just pop it back in. And of course, I was like, yes, let's try anything at this point. And two minutes later, I was able to stand on my ankle again. There was no pain, and that part was completely resolved. But these 10 months of @ one point putting myself into an air cast because my doctor just didn't know what to do. He wasn't prescribing anything, suggesting anything, sending me for any kind of testing. So I put myself in an air cast. I get crutches. I'm like, okay, well, maybe if There is something. Maybe it'll just by being immobilized, maybe it'll get better. It doesn't. And all it does basically is it starts giving me knee pain and then hip pain and then lumbar pain and then middle back pain. And just my whole body felt off kilter because I'm there going around in crutches for 10 months. You're probably not supposed to do that now.
- [05:19]
A
I just questioned when you were getting the ankle examined, did anyone ever do either bilateral views, so views of both ankles, or something called a stress view where they actually push on your ankle to see if there was what we would call instability?
- [05:35]
D
I didn't get any kind of like stress view in that way that they pushed, but I was told to stand in specific positions and both ankles were imaged.
- [05:43]
A
So at this point you have post trauma, right? You fell and your ankle had become subluxed, meaning that inside of the joint wasn't exactly lined up perfectly. Sounds like a podiatrist helped with the realignment of that joint. So your ankle is feeling better at.
- [06:03]
D
This point, the ankle was feeling better, but it had caused a bunch of other pain in my body. And so my doctor kept telling me, this is all muscular, things will even out. Just go see a physiotherapist, work on some posture, go see a massage therapist, loosen some muscles up, you'll feel better, eventually you'll be fine. So I take the doctor's orders, I go get massages, go to physiotherapy. Physiotherapy just keeps making me worse and to no fault of the physiotherapist herself. It's just that we didn't know what we were working with here. Eventually I ended up getting, I think it was a deep tissue massage, but coming out of it, my whole body felt incredibly loose and not in a good relaxed way, but in a I can't hold my body parts together kind of way. And I brought that up to the massage therapist and he was like, oh, well, that's normal. That's how you're supposed to feel. You're supposed to feel relaxed after a massage. But I don't think he fully grasped what I was trying to explain. Either way, I went home. It was super close, like half a mile away from my house. I made it home in my car. Then I had to go walk my dog, a 20 pound mini schnauzer. And I'm walking her just a few minutes away from the house and she pulls after a squirrel sideways. And my whole body turned and something cracked in my rib cage. I wasn't able to fully describe it as that at that point, but I felt something almost crushed or shattered on my right side. And I dropped to the ground basically on my knees with the dog there. There's cars passing by. I'm sure that everyone's, like, looking at me, being like, what just happened here? I was able to get myself together and get back into the house somehow. And then the pain just hit even harder at that point. The more I relaxed, the more it was just getting worse and worse.
- [07:47]
A
And, Nella, if you could use a finger to point to one spot where the pain was the worst, where would that be?
- [07:54]
D
It started off right at the lower part of my right ribcage.
- [07:59]
A
In the front or the back?
- [08:00]
D
It started off in the front. And then that pain, after a few months got a little bit more dull. It wasn't as sharp as original, but then it went into my back, wrapped around, and there was a spot around my scapula that was just so irritating that I actually ended up sticking butter knives into it and getting my boyfriend to stick butter knives into my scapula for relief. Whenever I would sit in the car, specifically, unless it was reclined really aggressively, it was like my ribs were stabbing me. But whenever I explained that to any doctor or medical professional, they just looked at me like I have three eyes kind of situation. So I kind of stopped using that terminology of my ribs are stabbing me, because whenever I said that, that meant you're crazy immediately. But because of the way that things progressed, I stopped using that terminology over time and started using different terminology, which led me to different problems as well. Like I said multiple times that my right ribs are stabbing my liver. And that's what it feels like. Maybe it's not my liver, it might be something else, but there's something being stabbed in there. And I would wake up in the morning and be throwing up bile for hours. And I would describe this to my doctor. It feels like my ribs are crushing me and that my digestion is stopping essentially overnight. And then when I stand upright, things start moving and the GI problems start up. So that just kept worsening from fall of 2022, when my dog pulling incident happened, up until I got surgery in 2025. At one point, it got into neck pain, jaw pain, muscle spasms, and my entire torso, basically from my neck down to my hips, everything was in spasm at one point, pressure behind my right eye, and really bad headaches from behind my head. And then the scapular pain was Also weakness. And that developed into the point where I had a hard time opening doors or I couldn't grab like a pop can out of the fridge because just that little motion would hurt too much with the scapula. And it kept worsening to the point where I couldn't even use a computer mouse. And typing at work became incredibly painful. I lost the ability to sit or stand for more than five minutes at a time. The pain was just that intense in the lumbar area. It felt like a rubber band was just squeezing me constantly. I kept going to my doctor. I had appointments monthly. He kept telling me that there is absolutely nothing wrong with me, but was only doing basic blood work, nothing more at this point.
- [10:35]
A
And doing blood work for what?
- [10:37]
D
A lot of it was thyroid. I do have hypothyroid Hashimoto's. And so he was checking that. So we went on a tangent at one point for about six months where I had to wait for referral to an endocrinologist to check out my thyroid, even though we were pretty sure it wasn't that. But then we couldn't explore other things until that was cleared. So I was just gonna avoid. And this kept happening, that we're under suspicion of one thing and we're gonna throw away everything else that it could be and just look at this one little thing and wait for that to happen. And the way that it is in the Canadian medical system, it takes a while to get appointments with specialists, so it really draws out getting a diagnosis in the end. And at one point he referred me to a sleep doctor because I told him that I couldn't sleep more than one hour with the pain. This was a cognitive behavioral therapy for insomnia. And the course was great, very helpful, but it didn't help me sleep for more than an hour without pain.
- [11:31]
B
That can fix your pain issues. It's not a drug that's going to numb the pain for you, it's a psychiatric treatment. But of course you're a woman. So the first assumption is maybe she's just got some issues upstairs.
- [11:43]
D
So the sleep doctor that I went to see for this course ended up writing a letter back to my GP to tell him that the pain is not in my head, that it's not psychosomatic, and basically urged him to investigate within his capacity on what is actually happening here. So this doctor, my gp, ended up still not doing anything. I ended up taking a lot of people's advice and started bringing my boyfriend to all my medical appointments.
- [12:10]
B
Oh, that makes me so mad.
- [12:12]
D
Honestly, Though it works. A six foot male in a room, things just happen the way they're supposed to. In my experience, not all of us.
- [12:22]
B
Have a six foot man at home to do our bidding. Okay. Some of us have to go it alone.
- [12:26]
A
I sense a new TaskRabbit opportunity.
- [12:29]
B
Oh, you know in Korea how they have those rent of boyfriends but it's.
- [12:33]
A
Like rent a male chaperone.
- [12:36]
D
Yeah. So I had taken my boyfriend to this appointment. I was lucky that he was a good sport. But this particular one was my last one with my gp. Even after this note from the sleep doctor, he told me that there's nothing wrong with me. He just brushed me off and told me that it's fibromyalgia at that point and that I need to learn to live with it because I'm just going to be in pain forever. And that's just what happens to some people. And not his words, but basically stop being a whiny woman because I just keep coming to see him and taking up his time from patients who actually need his help. So I talked to my boyfriend after the appointment in the car and I had been saying that this is not okay, but I needed a second opinion basically. And he, he gave me that. He told me that this doctor is gatekeeping the whole medical system away from me.
- [13:20]
B
I can see why you're still with him.
- [13:22]
A
Yes, and very fortunate because there are many people who don't have that second opinion to really take a 30,000 foot view and say, no, no, no, this is not how it's supposed to be.
- [13:37]
D
I ended up reporting him to the clinic that he works at, to the lead doctor that runs the clinic and I asked to be switched to a female doctor. There was a couple of other inc happened with that doctor, but anyways, so I ended up getting a call back from that lead physician that runs the clinic and instead of doing what I thought he would, he just told me that they're terminating the doctor patient relationship at this point. So I was left without a doctor.
- [14:04]
B
In Canada. Do you get to pick your doctor or is it like the doctors assigned to you?
- [14:10]
D
You get to pick your doctor but there aren't any doctors to pick from. So you can shop around if you're lucky to find one, but no one's taking patients. A lot of people do have to essentially resort to emergency rooms for primary care because they can't find a doctor. And emergency room wait times are quite heavy. I've waited 17 to 24 hours in a lot of my instances. So it's A difficult place to be in when you have a health problem. So basically this doctor terminated the doctor patient relationship. And I had no doctor. Nobody was taking patients. I looked around and everywhere I called they're like, no, we're full. Our roster is full. We can't help you. Try this other place. And there's nothing that I could find. And so I became depressed and I became hands off with my health for the next probably eight to 12 months in, just lying in bed, not knowing what else to do, being in too much pain to be in bed, to be honest. But I tried the floor as well, and that didn't help much either.
- [15:13]
A
Did you give any credence to the thought that I could have fibromyalgia and this is just what's gonna be my life?
- [15:21]
D
I did. And that was where I started looking into it and researching. And I was like, this does not make sense for me, Maybe it does for somebody else, but this is just not what's happening with me. And I knew that it was just used as a scapegoat diagnosis like it often is. And everyone around me was telling me that this is all in my head, like, pretty sure that most of my family did not believe me. So it was a pretty tough time in my life. And I also lost a lot of friends because they didn't say anything. But it definitely felt like everyone thought that I'm just going through some kind of psychosis and imagining pain and nobody wanted to be around me. And I don't blame them either because I was a grumpy person. I was in so much pain that I could not handle anything other than talking about my pain. It was awful. I wouldn't want to be around me in that state myself.
- [16:12]
B
I relate to that so hard. People are just so uninformed that they jump to these conclusions that just don't logically make sense.
- [16:20]
D
Absolutely. And at that time, I was still working from home, but that was becoming incredibly painful because I was losing function in my right arm and I'm right handed. And things were just getting worse and worse with that. I was really lucky that my employer went completely above and beyond to accommodate me with every single accommodation that they could possibly do, including obviously working from home. But they got me a sit stand desk, a really good chair. Just everything that we could think of to try to alleviate my pain, we did. And I was just getting worse and worse and I had a really difficult time focusing. I tried working from the bed, I tried working from the floor. It wasn't only painful, but there was a big element of just being professionally embarrassed by my situation because I'm trying to do a real job here and I can't see, sit or stand or I'm taking calls from bed. And it was absolutely awful. I started Googling my symptoms and going through all of my medical records, all of the different my charts, and I heard a suggestion from somebody to create a medical binder. So that's what I did. I created a virtual medical binder with absolutely everything. And it actually helped quite a bit in my own thinking because there's so many different mychart systems and nothing's connected. And so you as a patient have to start pulling everything together yourself when you become a complex case. It took me a long time to put all this together and I was going very slowly because I was depressed and I didn't think this was going to lead anywhere realistically, but I still had hope that it would. So I kept doing it. But while I was doing that, my pain just kept getting so bad that I ended up going to ER a total of eight times in this span of this illness. This is mostly because I had no doctor, so my whole arm is numb and I've lost use of my arm. I need to speak to somebody about it. So, ER it is at this point and situations like that, with all of the different pain that I was having throughout the eight different ER visits, I did end up getting referrals to a lot of different specialists which ruled out a lot of other problems, which was great. But I ended up seeing two different neurologists, one neurosurgeon, six different pain doctors, two orthopedic surgeons, two sports medicine doctors and that one psychiatrist from before. Just to add that in there, how many doctors? It was a total of 17 visits. Some of them were repeat visits, not including the ER visits themselves. But yeah, nobody could figure out anything.
- [18:40]
A
And what was your main complaint at this time?
- [18:45]
D
Main complaint was squeezing around my diaphragm, that rubber band sensation that made it difficult to do anything and that inability to sit or stand and then the pain at my scapula and the weakness at my scapula. But that pain that just made me need to stick a butter knife in there, that I don't have any other explanation than needing to stick a butter knife in a specific spot. But that was that one spot that just something was wrong there. I tried trigger point injections there and they did nothing as well. I was put on a bunch of different opioids and it didn't touch the pain. I got side effects, but no positive pain relief at all. And I've had lots of nerve blocks. I've had cervical epidurals because we thought the pain going down my arm. There was a diagnosis of cervical radiculopathy because I have something at C5.6, but it's not big enough to actually be causing problems. And after all these different referrals and the ER visits and all of that, I still didn't have any answers. And I started going deeper into my medical records and looking at every single word that is in my chart, in the blood work, whatever there was that I didn't fully understand because there's obviously lots of medical terms that I had never encountered before. But even if the result was like, oh, this blood test is negative, I would still look up, what is this about? And I kept googling and then going into chat GPT and obviously not trusting everything in chat GPT, but cross referencing back and forth and checking journal articles and looking at various different things. And I found this one identifier in my blood work that's used to aid in the diagnosis of a mixed connective tissue disorder. And those words stuck with me. So I started looking deeper into that, looking at different symptoms of that, and I'm like, oh, okay, I probably don't have this specific connective tissue disorder that this blood work is testing for, but there's something connective tissue related with this. And then I keep searching some more, eventually going on to TikTok, looking up, because lots of people share their symptoms and what has happened to them. They share their stories, and then you can see if that makes sense. So I kept looking up and then I found Ehlers Danlos syndrome, which I had never heard about before. And the moment that I saw that, I was like, okay, this is definitely a part of this picture. Because Ehlers Danlos syndrome doesn't just explain your pain. It explains the random dislocations that I've had. It explains the random injuries I've had at CrossFit, the fact that I was always missing box jumps and have my shins all torn up because I have no proprioception. But either way, I kept looking and I kept putting all of my different symptoms in along with hypermobility this time. And I magically came across a video from Sasha, and she posted about dealing with severe pain that just completely matched everything that I had been experiencing to a T. And I was like, this has to be it. There is no other explanation for my situation. And also, Sasha's Canadian, so there's an extra credibility factor. So that's where I was like, this has to be the answer and this is it. All right.
- [21:53]
A
So Sasha, will you bring us up to speed about how and why you made that video?
- [22:01]
C
Absolutely, yeah. So very similar to Nella. Looking back now, it's quite obvious that I've always had symptoms of hypermobility. So actually during puberty is when I started to experience some right sided mid back pain. During high school, my job on the weekends was cleaning houses and cottages with my mom. And I remember two o' clock comes around and I'm complaining of back pain. And she's like, Sasha, I'm 40 and I have back pain. It's not a big deal. Or whatever.
- [22:34]
A
It's called back breaking work. Right?
- [22:36]
D
That's exactly.
- [22:37]
C
So it kind of got brushed off as, oh, you know, you're growing. But my story really starts in 2022. I had just graduated from college and at that time I was working in a factory doing lots of repetitive bending, twisting and lifting. At that time I also was super into the gym. I wanted to become a powerlifter actually. So I was lifting five to six times a week with no issues whatsoever. I was getting anywhere between 10 to 20,000 steps in a day. I'm seeing my friends all the time. I'm literally just normal. And so now in July of 2022, I got Covid very, very bad. It was just awful. But it's important to note, I actually didn't, I wasn't coughing very much. And now in about beginning Of August of 2022, I had been cleaning out my car and so I was in that bent, almost shrimp position for a while and I remember getting this awful right sided mid back pain and I was like, oh, that's so weird. Maybe I just strained a muscle or something. But I didn't think anything of it because I was completely normal. I never had any type of pain whatsoever. So I continue on. And now at work I'm noticing again around that 2, 3 o' clock in the afternoon, I'm getting this back pain again. And my co workers and my parents were like, okay, it's been a couple of weeks, I think you should get this looked at. But I didn't want to have to go to my family doctor. I was like, it's not that serious. I think I can probably do this with another kind of practitioner. So I had decided to go down the route of a chiropractor. She was very lovely. She did like a whole body assessment and just from looking at my spine she was like, I Think you might have some mild scoliosis. And I was like, oh, interesting. I've never heard this in my whole life. But okay. So she wanted me to get a X ray just to make sure she did, you know, the normal routine adjustments, which ended up making things worse. So I maybe only saw her about three or four times because it was especially when she would put me in that pretzel position and then that crunch onto the back. But it wasn't any initial pain, but it was a delayed pain. So once that wasn't solving anything, I was like, okay, I'm gonna go to the next. So I had tried massage therapy and they were just amazing. There was a team of two and they were so, so, so adamant on figuring this out for me because they could see how much this was affecting me. I was starting to work a little bit less because I just couldn't last an eight hour shift. They're pulling out their textbooks, they're doing all these tests. I think they maybe had thought that it was maybe a disc herniation or bulging or something of that nature, but again, that just still wasn't fixing it. I got maybe some temporary relief, more superficially, but this was like a deep internal pain. So then I went on to an osteopath and same thing, she did a whole full body assessment and she had actually said that it was feels like your rib cage is compressed. And I went, oh, okay, well, that's interesting. I don't know what that means, but yeah. So actually later that night I was laying in my bed and my mom was at the other end of the bed and all I had done was I laughed. And all of a sudden I had the worst pain I have ever felt. It was on the right side of my lower rib cage, anteriorly on the front. And it felt like a lower rib was stabbing me. I could hardly breathe, I couldn't move. So my parents essentially carried me out of my bedroom and took me to the er. And the ER was like, you're fine, you might have some costochondritis. Which I knew in that moment, even being in so much pain because I had been doing a little bit of googling up until this point. Costochondritis is inflammation of the rib cartilage. But to my understanding, it's of the true ribs. Ribs 1 to 7, they attach directly to the sternum. So I was like, well, that just doesn't make sense. I'm not describing pain in my upper chest. This is lower ribs. They basically gave me a muscle relaxer and Sent me on my way. I spent probably six hours there for no reason. So by here I was still kind of pursuing a little bit of massage therapy. And this is around like October, November 2020. And I started to realize that when I'm say reaching to open up the microwave, that I'm feeling a rib underneath my right breast pop in and out of my chest. And so then in these massage therapy appointments and it was very deep fascial work, very deep tissue massage, kind of similar to Nella. I think it was too much for my body and loosening things up and because I'm feeling this rib pop. And so during the appointment I had told them, this doesn't feel right. It's not painful per se, but I just know this isn't supposed to be happening. So they put one hand kind of under where I'm describing the pain and then they're putting their palm against my back. And sure enough they were like, oh my God, I feel your rib popping out of place. But again, we just didn't think anything of it. So I was doing a little bit of googling around here and I did come across a condition, but it's extremely rare. So I essentially gaslit myself into being like, oh no, you do not have a rare condition. Of course you don't, it's not that serious. I just didn't think anything of it up until this point. So now in around like November 2022, it felt like a knife was stabbing right through my back, right out to my chest. I had started to develop so many symptoms at this point. My chief complaint was this still right sided mid back pain. Other describing words for it cycled through numerous feelings like a gnawing pain, stabbing, dull, achy, but also same thing. It was lingering around my scapula, around the outline of it. I was starting to get intermittent intercostal neuralgia on the front of my rib cage. So I describe it like I'm being electrically shocked on my rib cage. I started to get tingling in a lot of my extremities, which was starting to become increasingly concerning.
- [29:14]
B
The level that some people are so chill about the things that happen to them and the amount of panic I would have been in this moment, exponentially higher.
- [29:21]
C
Oh no, I definitely was crying every single day. I was hardly seeing my friends. In November I decided to take the entire month off because I was like, whatever is going on, my work is making a lot worse. It got to a point I could not even get through 45 minutes of my shift and I'm in so Much pain. I did not want to go the opioid route, but I was taking, you know, muscle relaxers. I was using ice packs on my back all the time. Anytime I had to leave the house, I'm leaving with five ice packs or heat, putting the heated seats on in the car. But even then, I could hardly sit in the car, even for five minutes. It was absolutely debilitating.
- [30:02]
A
And, Sasha, you are very young.
- [30:04]
C
Yes.
- [30:05]
A
And what do you think, people who saw you when you were complaining about all this back pain and debilitating pain for this young, healthy woman, what do you think people were assuming?
- [30:19]
C
Honestly, no one ever outright said this, but I think people thought I was maybe doing it for attention. But I kept saying to these practitioners that I'm seeing, I was in the gym lifting weights. I was seeing my friends every day. I was super active. I just graduated college, and I want to go into my field. I do not want to be laying in my bed back there. No one wants this. And so it's nice that obviously no one said that to my face, because I know there's probably a lot of people who have actually heard that directly to their face. But that was definitely my gut feeling, as people were just either thinking that I'm making it up or I'm maybe over exaggerating the level of pain. But I definitely feel like I have a fairly high pain tolerance. So I was just like, guys, I just want to get on with my life. Essentially. I'm at the brink of entering into seemingly adulthood. I don't want to be feeling like this. So I had taken off that whole month of November just to see, is this going to help heal whatever is going on? I was seeing a few family doctors in my office at this time. And so I did have an X ray, and sure enough, I do have mild scoliosis. So they were like, oh, you're just having some musculoskeletal spasms. Just take some salt baths, have some muscle relaxers, and just rest. Rest up, girl. And I was like, okay, well, I've been doing this since August.
- [31:47]
B
I am well rested, sir.
- [31:49]
C
Yeah, exactly.
- [31:51]
A
Could I be any more rested?
- [31:53]
C
Right, exactly. And so I was feeling quite frustrated because obviously, I went from being so normal to something like this in my life. So now this is about December 2022. I'd seen about 10 different clinicians at this point, still with no answers whatsoever. I had done some physiotherapy for about a month or two, and there were still really no answers. And she basically was just having me Work on some core strength and back strength. However, a lot of these movements included twisting or bending movements. And I just noticed that it just didn't feel right. But I couldn't really put any other type of explanation to that. I just knew it just wasn't right. So then I decided to go to this other chiropractor, but not for any adjustments, because he offered acupuncture. And I had never had that done also in my life. It helped initially and very temporarily. And in terms of temporarily, I mean, by the time I walked back to my car, I was already in pain again. But it was nice to have relief for two minutes. And so this chiropractor, he was doing a lot of digging. After several appointments, he's like, I've actually been reaching out to my colleagues and other alumni because I have no idea what's going on with you. He, for a while, had thought that I might have rheumatoid arthritis. And that completely sent me over the edge. I was so depressed. Cause I was like, so you're telling me I'm gonna have to live with this for the rest of my life?
- [33:31]
B
How old were you at this time? Because, again, you're younger.
- [33:34]
C
I think I would have been, like, 21 or 22.
- [33:37]
B
That's a lot to hear.
- [33:39]
C
At 21, it was like, truly, my world was shattered.
- [33:43]
B
How long is this journey now, at this point that you've been trying to get answers as well?
- [33:48]
C
It has been about three years up to this point. I was fresh out of college. I was just waiting to get my life started. So he had thought rheumatoid arthritis. And he had direct contact with my family doctor. So he really advocated for me to get some blood work done and an MRI in the thoracic lumbar area. So I got blood work done. And they had also tested me for the HLA B27. So I'm assuming they were also trying to see if it was ankylosing spondylitis. Thank goodness that came back negative, although I know I think you can have that with a negative blood work for that. But all of the other blood work panels that they had looked at, it didn't really point towards any type of inflammation or an autoimmune condition. Thank goodness. I was still happy that we were able to rule that out, that portion of it. So then it still left me with what is causing this pain. And so finally, at one point, this chiropractor had said, I think this is a complication with your intercostal nerves and muscles. So these were words that I had never heard of before because, you know, I didn't know really anything about any type of medical condition. I had went to school for marketing. This is not my forte. So now this is January 2023. I am basically completely bedridden. I ended up having to quit my job job because again, I couldn't Even last the 15 minute car ride just to get there, let alone bending, twisting and lifting things for that long. Thankfully, the job was quite lenient and it was no worries there. They were very accommodating towards that. At this point. I also couldn't even sit long enough at my vanity to do my skincare in the morning without completely bawling my eyes out in pain. Every day was different, which was quite puzzling to all of this. Is like, why is every day not exactly the same? Some days I would wake up and I'm already crying in pain and my whole day is just written off. Other days I could get up and make my own breakfast, but then that would be as much as I could do for the whole day, was make my breakfast. I had to really start to make more things accessible and accommodate myself. So I moved my skincare and my makeup to my nightstand so I could just do it from bed. Just keeping some sense of normalcy kept me a little bit sane, even though we were on a slow decline mentally. It was even like my mom would have to blow dry and brush my hair after I had had a shower because even just raising my arms for that long to wash my hair gave me so much right sided mid back pain. I was having a little bit of these symptoms on the left, but the right side was the absolute chief complaint in all of this. I was laying on heating pads all day and ice just to even take off 1% of the pain. But truly nothing was touching this pain. It was just so relentless and it didn't make sense of why this is happening. Around this time in the winter of 2023, my mental health really took such a hard hit. Honestly, there were times where I just, I didn't really want to be here anymore because the pain was just so horrible. And I had been seeing so many doctors and no one can give me an answer or even an avenue to explore and to start googling. So it wasn't until I started really reflecting more on all of these appointments that I had and took little bits and pieces from everything that everyone's saying and it all circled back to the rib cage. So I started googling more about intercostal nerves, intercostal muscles, intercostal neuralgia. So that was the first thing that I had found where I went, okay, wow, intercostal neuralgia. That makes a lot of sense. But then of course, I'm like, okay, so why is that happening? What is the root cause of this? So finally, around this winter time, I had found slipping rib syndrome. And I had remembered, oh, my gosh, I found this back in October. So I took a total, total deep dive into slipping rib syndrome. Even though I knew they're saying that this is rare, I was like, at this point, I've seen so many doctors had these tests and I'm not getting any answers. Let's just explore this for a second. So I went full in. I'm finding anything on PubMed that I can. I'm finding the oldest literature possible of when this was first discovered, just to see the progression in this condition. So I really took this deep dive and I had this light bulb moment about. And I knew that this was the cause of my pain. It was just that gut instinct. And so now I was like, okay, how am I supposed to go to my doctor and tell him that I googled my symptoms and that I think I have a rare condition? I was terrified. I didn't know how they were going to take it. So that's basically how I had started the appointment. I was like, listen, I understand how this feels from your perspective. A woman in her twenties coming to you saying that she's, you know, looked up her symptoms and is saying she has a rare condition. However, we're not getting any other answers with this. I would really like to explore this, and I'm so blessed with an amazing family doctor. He totally agreed. He's like, yeah, we are not getting any other answers here. Let's explore this.
- [39:23]
A
And Sasha, I just want to interject because I think that was just positioned masterfully on your part to really frame the discussion around the provider's point of view. Right. Understanding that, oh, probably a lot of people come in thinking what they have and googling things and whatnot. But the fact that you had already exhausted all the thoughts and opinions and options, I think really set you up for success. Because people all the time ask us, like, how are we supposed to talk to our doctors? How are we supposed to get them to take us seriously? And I think really how you. You positioned the. How you did the research was really a wonderful example.
- [40:02]
C
Thank you. That really means a lot, honestly. So I had went to my doctor and had said this. He. He was like, yeah, let's do it we're not getting any other answers. And then he had basically said, I have never learned about slipping rib syndrome in medical school. I probably know less than you do at this point, just because I had googled so much already. But he was like, I don't feel comfortable doing any type of physical exam. He said, how about I refer you a sports medicine doctor? Surely he has more information about this, or even if he can't diagnose it, maybe someone else can. So I go to this appointment with the sports medicine doctor and I tell him everything, beginning to end. I watched him Google slipping rib syndrome. God. And then he proceeded to tell me that it'd be highly unlikely for me to have slipping rib syndrome because I'm not a professional rower, because I'm not performing those repetitive movements. And I had said I was working a repetitive twisting, bending and lifting job. But okay, so he really didn't believe me that much, but he was willing to see it through a little bit. So I had proceeded to tell him that in my research, I had found a physical exam called the hooking maneuver. This is where the patient is laying flat on their back. Back. And the practitioner will take their fingers and wrap it around the lower ribs and pull it outwards towards them to see if they can feel any lower rib instability or movement. I was also trying to explain that I could feel that rib underneath my right breast pop as well. But it's not every time I move my torso. It's just random. He did not believe that for one second that those ribs could possibly be moving, even though I had told him, you know what? My massage therapist can feel it. I wouldn't lie about that. So I think he potentially felt my lower ribs move a little bit. But I think he was still quite confused about it all or just not fully understanding. He didn't have all of the information.
- [42:09]
B
You're so nice. You're nice. He's nice because we know that he also just doesn't wanna.
- [42:14]
C
Yes, that. And that was the other thing I did. I did feel pretty rushed in this appointment as well. I think he had maybe already had his mind made up before I even entered the room. Unfortunately, obviously, I can't prove that, but that's just how the vibe of the room had felt. He then said, well, that's just the rib cartilage moving. I'm not concerned about that. And I said, that's actually the problem. That is the problem of slipping rib syndrome. And so his recommendations were for me to continue with physiotherapy despite it not helping for me to go see a rheumatologist, even though we had already done some blood work that.
- [42:53]
B
That.
- [42:53]
C
That was already ruled out. And then to buy this $200 cream that he sells that may or may not work and will take at least six months to work. So I said, no, thank you, I'm not doing that. And so I literally left that appointment bawling my eyes out. I felt so hopeless because I was like, okay, what am I going to do now? Because in my research in slipping rib syndrome, it didn't seem like there was a very evident expert in slipping rib syndrome or any kind of chest wall condition. So I just felt so hopeless. I was like, what? What am I going to do now? And so I had texted my parents, and immediately both of them were like, you need to see someone who is specialized in this. And then my mom had said, we're done with the Canadian healthcare system. We are going to go to the US and so obviously throughout all of this, my parents had been googling just as much as me. They have been a huge support in all this. And so through all of this research, we kept seeing this name pop up in this Facebook group for people with slipping rib syndrome. We kept seeing a surgeon's name called Dr. Adam Hansen, and he was in West Virginia. And so my mom had texted me back and said, you know what? We're gonna go to West Virginia. That scared me. Honestly, I was both relieved, but also scared because now that means I have to go out of country for medical and for a diagnosis. But thankfully you can actually self refer to him. So literally that same day, we got in contact with his office and they had sent over the very detailed information to be able to get an appointment and give them as much information about you as possible. So this was April, and I wasn't able to get an appointment until September. So very, very long waiting game. I literally had an entire countdown calendar in my room every day I'm crossing the day off. But at the bot, I would write by the end of this month how many days it was until I could see him. So I was just. I was absolutely stoked. So in September finally came my parents and I drove to West Virginia and I had my appointment with Dr. Adam Hansen. And sure enough, I was correct that I was diagnosed with bilateral slipping rib syndrome on my 9th and 10th ribbon ribs. So this is again, anteriorly we're talking about, and as well as a bridging cartilage fracture between ribs 5 and 6 on my right side. So in the Upper rib cage, you have some vertical little joints. Not everyone has them, but unfortunately, mine, between ribs five and six had fractured. To this day, I have no idea how it fractured. The only thing I could think of is maybe when I was in the gym and performing better bench press that I was maybe, you know, not using correct form properly and maybe saying the. The bar a little bit off my chest. The only thing I could come up with is maybe how that had fractured. And so that is what had been causing similarly to Nella, this elastic band, squeezing feeling, chest pain, shortness of breath, and the popping that I was feeling of that rib there, that was the answer for that.
- [46:14]
A
And just to interject, significant, give people a little bit more kind of clarity around the anatomy, because this is very important to understanding how and why you may be experiencing this type of pain. But people may not have an idea of how the rib cage is physically structured. The point of the rib cage is to be a physical barrier to protect your heart and lungs. That's what lives inside of the rib cage. You have the sternum. There's actually three parts to the front, but in general, you could think of it as the sternum is the breastplate, the hard part in the middle. And then your ribs connect throughout the sternum. But not all of the ribs connect to the sternum directly. There are two ribs that connect through a little piece of cartilage to the other ribs and the sternum. Those are called the false ribs. And then there are two more ribs that don't connect actually at all. Those are called the floating ribs. Now, that chest wall is meant to have some give in the system. When you take a huge breath, you expand. And then, same thing. When you take a deep breath out, you are contracting. So the rib cage is meant to be a system that moves with you. But if you have too much flexibility in the system, then they can start maneuvering on their own. And in this case, because you both. Well, I guess I'm assuming, Sasha, I made this assumption that you both had underlying hypermobile genetic disorders that put you at risk to having more flexibility at those junctions. Then those ribs can move in a manner that is unfortunately too flexible and can cause this slipping rib syndrome.
- [48:13]
D
Right.
- [48:14]
A
The rib is moving in and out of its natural position, similar to how people with ehlers danlos have frequent ankle sprains, have shoulder subluxations. Okay, Just you think about all of those tiny little joints within the rib cage system that are popping in and out.
- [48:32]
C
Yeah, no, that's a perfect, perfect explanation. The rib cage is A closed system. And so how the surgeon explained it is that even though slipping rib syndrome, the action is happening at the front of the rib cage because it's a closed system that you're going to have that the referred pain through the flank and rate to the back as well. And so essentially, the main reason why slipping rib syndrome also hurts so bad is because the intercostal nerves lie behind the ribs. So mine basically fully detached from my rib cage, so they were just floating there. And so when you sit, you're starting to compress the ribcage a bit, so they physically slip underneath each other, and then they're compressing the intercostal nerve. And so I had this appointment, and it was the most validating appointment I've ever had in my life. I was able to tell my story, beginning to present, and I was so, so, so incredibly validated. I just. I started crying happy tears, but also frustration that here I am sitting in another country, and he knows exactly what I'm talking about. And he's not making me feel crazy. He's saying, yes, this is real. You're not making this up. And he had done a physical exam, and he did not do the hooking maneuver, because I've now learned that that's the outdated way to do the physical exam. And so instead of taking his fingers and pulling outwards, he's just basically putting two fingers on the rib and pushing down. And so he's just looking for that instability. An analogy that he often uses is like playing a piano key. Whereas a normal rib cage is that closed system, and it's supposed to move as a unit together, Whereas mine, rib 9 and 10, you could literally press it down as if you're pressing a piano as well as the rib cage in those areas were so extremely tender. And so he basically cross referenced this physical exam with a chest CT scan. And I got diagnosed. So then I had surgery scheduled for January of 2024. And so I had decided to go to this cardiothoracic surgeon because he had actually created one of the newest techniques for slipping rib syndrome. Slipping rib syndrome was actually discovered. I believe it was 1911. And up until this point, the most common surgery, they were just doing a rib resection. So they were just removing the hooked cartilage part of the rib, and typically, seemingly with actual parts of the rib bone as well. However, my surgeon had found that people were still having a reoccurrence in pain. And it wasn't solving all of the issue. It was resolving the intercostal nerve being Compressed breast. But it wasn't quite solving that rib hypermobility aspect to it. So he had created some earlier techniques of basically suturing the tips of the rib tips together. I think he did potentially around 250of those, was getting pretty good results, but he still knew it could be so much more than that up until the 90% range or so. So that he had developed the newest surgery that he's only using now, which is called the costal margin reconstruction surgery. So that is what I had been scheduled on my right side only, as well as he was going to essentially remove that fifth and sixth bridging cartilage fracture because that had fractured and the body sensed this instability. So it had to lay down like bone, like calcium. But the body's not fantastic at doing that. In some cases, I've heard it actually can heal itself, but unfortunately in my case, that didn't happen. So it basically then became a bone on bone grind on my intercostal nerve. So again, that's why I had so much chest pain and everything in there. So I'm very thankful that that was all going to be taken care of in one surgery. And so basically what the costal margin reconstruction is, is he removed the rib tips on my ninth and my 10th ribs, and then they actually reuse parts of the cartilage that they had just removed. So in my case, it was an inch and a half long of rib cartilage that was stabbing me essentially. And so he removed this and then he makes it into these little 1cm graphs, kind of rounds the edges and whatnot. And then he sutures it between the slipped ribs so that now the rib cage has some more equal spacing between the ribs.
- [53:22]
A
Basically, he put in a mechanical block so that the two ribs, they'll stay apart.
- [53:27]
C
Yes, they won't then slip underneath each other. So he basically takes that rib cartridge back to the bone where the bone begins or ends. And then he takes what's called a bio absorbable plate and he sutures it over top of the reconstruction. Because in most surgeries afterward, in some cases, you're put into a cast to immobilize the area so it can heal properly. But with the rib cage, the ribs are always expanding anytime we're inhaling and exhaling. So there's not really a good way to immobilize the area. So this plate, it's like a polymer substance. It act as like a cast. And so it, it needs to keep its integrity for around three months to protect it. And then over the next like roughly one and a half to even three years. The body will slowly reabsorb it, so it slowly breaks down and then scar tissue essentially takes the place of the plate. So it's the best way that you can get it a almost normal rib cage.
- [54:31]
A
Again, it's a very difficult problem because you have to maintain the dynamic.
- [54:36]
C
Yes.
- [54:37]
A
Of the rib cage in order to allow you to breathe normally. And yeah, I applaud him for the ingenuity for you, for being someone who is going to take this risk without understanding exactly what the predictable results are going to be.
- [54:56]
C
Yeah, I knew like at this point, again, from what I had seen online that that this was my absolute best bet. And so a lot of how TikTok played a factor into all of this is because. So being in Ontario, I knew that I needed to be able to get this surgery being out of country. And so again, through this Facebook group, I had read that a lot of people in Ontario and mostly even Canada when they were applying for out of country prior approval to get it funded, were getting denied. So I went into it not confident. But around October I had applied for funding and then in mid November I was denied. And essentially, I like to call it, I went into lawyer mode. I don't have to get into the nitty gritty of it, but they denied me for three different reasons. And after reading through them, I knew that it was false, all three. And so essentially I did this deep dive into really understanding the language that they were using in the initial application versus the language that they were using in my denial letter versus what is actually written in the Ontario Health Insurance Act. That's their basically own set of rules into who was going to get funding and who is not. So I read through it, I figured out what the criteria of the surgery needs to meet. And I knew, yeah, it checks that box. Checks that box. Oh, it checks all of the boxes. They by law actually have to pay for this. So I had to contact a bunch of thoracic surgeons here, get a letter or rejection letters from them saying that, yep, it seems like she probably has this, but we don't deal with it at all. All I found multiple discrepancies in the application and the denial. So I had ended up writing a three page personal letter to, it's called ohip, the Ontario Health Insurance Plan, outlining that some of these questions actually don't belong in a prior approval application. And I explained why, et cetera, et cetera. So I had then faxed them 44 pages of further proof as to why they need to pay for that. This because again, everyone before me was getting denied. So I was doing it obviously for myself, but for everyone else that I knew desperately needs this surgery as well. So it was a long waiting game. November and then January surgery month comes. Still hadn't heard. I ended up involving my mpp, my member of provincial parliament, because I just needed another person of seniority to support me in this process. And yeah, so they were a help. And then finally, I think it was something like five or six days before my surgery, I got approval, they had approved me. So that was a massive, massive weight off of my back. And so it was around this time that I started to post a little bit more on TikTok because when I would search up anything related to the ribs, a there was a lack of information. There wasn't really a conversation happening at all. But also the information at that time that was out there, there did seem in my opinion to be a lot of misinformation surrounding it. So I didn't really post very many, like talking to the camera videos. They were mostly like TikTok carousels. But I had started to post a lot more about slipping rib syndrome just to get the name of it out there so that people know that it even exists to begin with. I had started to post a little bit more on TikTok and they started to gain a little bit of traction. There was one that had actually got, I think it's like 1.2 million views. So many comments. And it was so fulfilling to be able to see so many other people, their light bulb moment and be like, oh my gosh, I've had this for a decade. Thank you so much for talking about this. So, yeah, it was just so fulfilling to be able to have a little bit of a helping hand and maybe speeding up that process for other people. Something that I do wish I had had when I was also looking on TikTok for that, this. And so I had eventually then written up a really detailed document in this Facebook group outlining how I was able to get the funding for the surgery. And around, at least to my knowledge, there could potentially be more. But to my knowledge, at least eight other people from Ontario have now been able to get their surgeries covered. So it's just so fulfilling that it feels like my pain had a purpose and I was able to help other people, including Nella.
- [59:46]
B
You are wise beyond your years. Sasha, like wise beyond your years. You're like. Not only did I argue and take on a legal perspective, I also created A detailed document in which the entire population of people suffering with this condition to just systematically take down. Also, I'm just sitting here flabbergasted that it's in Canada. You can get them to pay for surgery in another country.
- [60:09]
A
There was just a whole. On TikTok, the newspaper did a Freedom of Information act request, and they went through decades of these denials. I just saw this video the other day. You do have to prove that there is no one in Canada who can perform this procedure or give this treatment. I think the use case was for some specific type of chemotherapy for cancer or. But in your case, it was a surgical procedure that no one was performing. I think for, you know, a lot of people who would listen to this podcast and people who follow me on TikTok, they feel quite hopeless, right. When they get that denial letter and they're like, well, I don't know what to do. And for you to say, you know what? I'm not going to go that hopeless route. I am going to go the proactive route and do this. And not to say that everyone's going to have the same outcome as you. At least you dug in and you did the work. Right. You matched legalese with legalese and you won. I mean, that's absolutely incredible. And not only did you win, but you set a precedent for so many that will come after you. And hopefully the Canadian system understands. Wow, we have so many people. We're going to train our own physicians to do this and to have this type of procedure covered in Canada so we can serve our Canadian population, which I think is probably in their best interest to do. Great.
- [61:36]
C
No, I completely agree. And so I've actually had two surgeries for it. My last surgery was in August of 2024. I had the reconstruction on my left side because after my first successful surgery, as soon as I got out of surgery, I was like, I can breathe again. And so many of my symptoms had already resolved. And so after I had basically silenced the worst of the pain, now my left side was like, oh, wait, I'm still hurting, too. An analogy he often uses. The surgeon is like, there's a big dog and a little dog both barking at the same time. The big dog, if it stops barking, well, the little dog is still barking. And now that's what you're focusing on. So my left side had started to get much worse. So we decided, you know what? I'm young. I've had a first successful surgery. Let's just get this over with once and for all. So I Had to go through that process of getting approval a second time. And funnily enough, I go to apply again because again, it's same surgery, same surgeon, same hospital, it's seven months apart. I still again have to prove that this surgery isn't in Canada, et cetera, et cetera. So I still had to apply again, which was no biggie. I go to apply and I see that the application had actually changed. So it's all completely alleged. I cannot claim anything. However, every point that I had written in my personal letter, they had changed for the better on the new application. They had taken out certain things, they had put in specific definitions of some medical terms, and all in all, made it a lot easier to be able to get a yes right off the bat. So that's incredibly validating.
- [63:22]
B
I just know in the US that it would be the opposite, that they would look at what you did to go around correct. They'd be like, okay, guys, she circumvented it here, so we need to add all of this red tape so that she cannot get the next surgery.
- [63:35]
A
The fact that you got a government form to be changed.
- [63:40]
C
I still think about it every day, but obviously I'm so thankful that that that is the case.
- [63:46]
A
I want to circle back to Nella. What did it feel like to watch that video from Sasha online?
- [63:56]
D
So it actually brought tears to my face, I think the first time that I watched it and then I watched it probably 10 more times and then I started bawling. It was past midnight on a work day and my boyfriend was already had fallen asleep. And I'm there scrolling TikTok on my phone and I see Sasha's video and I look at it and I keep re watching it however many times I rewatched it it and tears are coming down my face and I actually go push my boyfriend. I'm like, you need to wake up. I've just figured out what's happening here. And so I wake him up. He's all groggy, like, what? He watches the video. He's like, what do you mean? This is rare. You don't have this. I'm going back to bed. So he goes back to bed and I spend the rest of the night looking at her other videos. She's probably thinking, the next day, who is this person creeping my profile? I still haven't messaged her because in my brain I'm like, this girl just went through something deeply traumatic. She's talking about it. It's incredibly rare. What are the chances that I have this rare thing, even though I'm pretty sure I have it. But I don't want to insult Sasha by messaging her about this frivolous problem that I'm having. And so I think at that time on her profile, she had listed another podcast episode, a Bendy bodies episode with Dr. Hansen, as a link to. To actually go see it. And I was like, okay, I need to listen to this with the surgeon who's doing this surgery. Clearly, I need to find out what's going on here. This is still. Before I message Sasha and I spend the whole night. I think I listened to it two.
- [65:28]
C
Times throughout that night.
- [65:29]
D
It's a pretty long episode, too. So I was out this entire night doing research, as I had spent many months doing already. And by the next morning, I was like, okay, well, I have to message Sasha. There is no other possible explanation for what's going on with me, so I'll just do it. And I think I rewrote the message like five times before I was confident enough in sending it because I actually felt nervous about sending Sasha a message, but I did it because obviously I need to figure out what's going on with me. And Sasha was speaking so eloquently and, like, really able to explain the exact spot where the pain is and the suffering associated with it. And she got through to the other side of it already, and she's feeling great. So I'm like, this has to be it. So she responds back pretty much immediately, and she's like, what you're describing sounds very much like what I went through. Obviously, I can't diagnose you, but here are some resources. And she pointed me to the Facebook group, she pointed me to the slippingribsyndrome.org website, where there's a whole bunch of medical research that's listed there, so everything's already accessible. And I had seen this website a few months before, but it just never clicked in my research. I was, again, it's rare. There's no chance of me actually having this rare thing because we keep gaslighting ourselves, especially the more that we're told that you don't have this thing or your ribs aren't actually stabbing you, the more you are scared to go down that path, even. But either way. So Sasha gave me all of these resources and had already done all the groundwork. And she pointed me to where her, I think, 20 something page manual on how to get provincial healthcare funding for this rare surgery. And so I go through all of these materials, and I keep messaging Sasha because I'm encountering a lot of roadblocks in this whole thing. And obviously, I still don't have. This is June 2020. I still don't have a family doctor. And in order to get anywhere in the Canadian healthcare system, you need a family doctor to do referrals, to get imaging, to do all these things. And I didn't have that. But after talking with Sasha, she mentioned that she had seen an osteopath. And then that got some moving around in my brain, and I was like, oh, well, I know an osteopath. I'm like, okay, let's see the osteopathic path. Can he assess my ribs? And to this, I had actually sent him the Bendy Bodies podcast episode. And I'm like, are you able to listen to this? Can you see what. Like, if this is my situation? And I think I sent him one or two journal articles. And then I went into the appointment, and he examines me, and he's like, your ribs are moving like piano keys. And so I was like, okay. The first source of validation, this is that first moment where I'm like, okay. I'm like, somebody in the medical field actually says, I'm not completely out of it. I'm not crazy. There is actually something going on with my ribs. And he didn't know exactly what the situation was. Like, he's not an expert in slipping rib syndrome, but he does understand hypermobility, and he's been really helpful with the hypermobility side of things for me, with other pieces. But he definitely said, like, absolutely, something going on with your ribs? I think it's the fourth rib and down. Like, he was a little bit off, but it's difficult to tell with these things. But either way, he ended up writing me a little note with his signature. And it just said that, you know, I examined Nella, and it looks like her ribs are hypermobile. There's something going on there. And I believe it's a source of her pain. And now I had a piece of paper with something on it from a somebody in the medical field. I'm like, okay, this is amazing. But I still didn't have a doctor. I didn't know what I was going to do. I did have a pain doctor two hours away. I ended up making an appointment with her. I saw her, I explained my pain. I showed her the journal articles. I pointed to a bunch of different online resources, and I showed her the note for my osteopath. And I told her. I'm like, I know that this is not the way that it normally Works normally you get referrals to you. But is there any chance that you could refer me to this one doctor specific doctor in Toronto who can diagnose me with this in Canada? Because this is what was in Sasha's instructions, basically, because in order to get the funding from the Ontario government, you need to to have an Ontario doctor who specializes in it to confirm that you do have this and that he cannot necessarily help you with it. So by September 2024, I had been able to get in with an appointment with him. He confirmed that I do have slipping ribs. He also confirmed that my case is pretty complex. There's a lot going there. My 12th ribs are also a problem. So he told me basically that he could do surgery on me, but do a resection where there's no stabilization of the ribs. So that could potentially help, but he's not guaranteeing a fully satisfactory outcome. And he told me that basically it's probably a good idea for me to go see Dr. Hansen in West Virginia. And so I did self refer to Dr. Hansen because you can just fill in a form very detailed about all of your symptoms and all of that. So I had that in the process and we're heading towards that. But still, to get the funding from Ontario, it wasn't done. I still had to go through a whole bunch of different hoops. And in order to get to the appointment with Dr. Hansen in West Virginia, I needed to get a CT scan in my chest and abdomen. And I couldn't get that without a referral from a doctor. And so I ended up looking for doctors again. Nobody with physical locations was taking patients at all. I ended up finding a online medical clinic that also has physical locations. It's a very common one here. It's not one of those like random places. It's a very established clinic. But they were taking virtual patients at the time and you could roster with them. So I rostered with them and I went through short appointments. It's a virtual 10 minute appointments with three or four different doctors who all told me that my case is too complex. They can't take on a complex patient in 10 minute virtual appointments. That's just not how things work. So sorry, out of scope and we're done. And eventually I found one doctor who, who I just got a good vibe from the moment that I stepped into the meeting with her. I basically told her that, hey, my ribs are unstable. I have had other medical professionals confirm that there's something going on there. I'm pretty sure that it's slipping rib Syndrome. And I do also have hypermobile Ehlers Danlos. I'm in the process of getting diagnosed with that. I do realize that I'm coming at you with a really complex situation here, here. But what. The only thing I need from you today is a requisition to get a chest and abdomen CT scan so that I can take this to get confirmed for diagnosis so we can look into this. And by the way, I've also cleared this. We've confirmed with all of my other medical testing so far over the past four years that I don't have any of these other things. And she was just like there, like listening to me, which had never happened really before with a GP for me. And, and the first thing that she says after I go through this spiel of this is complicated, I don't expect you to solve all my problems. She says, I'm sorry, I am so sorry that you've gone through all of this. I'm so sorry that the medical system broke you. And from that point on, like, she got me towards that imaging, she helped me get the funding. We. I did get rejected by the government, who once, actually, twice. The first time, for my first right side application, because I didn't have all the proper paperwork, I had a consultation note from the surgeon in Ontario, but I didn't have a formal letter from him that said the exact same thing. So once I got the formal letter with the same thing, everything got approved and everything was good. And then for my left side surgery, I ended up getting rejected the first time because my doctor thought that we could just put in like, almost like an addendum to the first application added on because it's the same surgery, right side, left side, but added on. It makes sense logically. But with the way that the bureaucracy works, it's also logical that they want a separate application for each individual thing so that when they get audited later, everything is a clean record. So completely made sense. And my second application actually got approved within 10 business days. So everything that Sasha went through was incredibly meaningful because now people are like, as long as you get the documents together and you get all of the different stuff steps, you're getting approved very quickly. So that was absolutely amazing. That GP that I found also helped me get a whole bunch of nerve blocks from pain doctors in Toronto. So I had to go from Ottawa to Toronto to get nerve blocks, six hour drives on a regular basis, and they would generally last like three to four days. But even those three to four days of relief were worth that drive. So I got diagnosed by Dr. Hansen in January 2025. Lined up my first surgery to be in June 2025. Had my right side done with the costal margin reconstruction. And then I also had my 12th rib removed, because that 12th rib was hooking under the 11th rib and even into the 10th rib, and it was just causing severe pain. And that was the part that was causing me to not be able to sit or stand. And then just less than three weeks ago, I had my left side done, and I am doing so incredibly well. I. I am not in almost any pain at rest. I mean, there's still some surgical pain, and there's lots of restrictions of not being able to bend or twist or reach for things or pick up more than £10 for, like, four months or, like, eight months for me, because. Left side, right side.
- [74:57]
A
But just interject and say you two have been sitting here for over two hours. Right. And you are both saying that you had been bedbound by these conditions. And I'm like, I'm trying. I'm getting antsy. I'm trying to move up and out of my chair. And you have both been solid as a rock.
- [75:16]
B
I'm gonna agree. But also, what a beautiful friendship that came out of this. And I think that.
- [75:24]
D
Right.
- [75:24]
B
You know, we've. We've had people get diagnosed, like, via social media before, but this was a little bit more than that because you guys were helping each other. Well, Sasha was helping thing.
- [75:34]
C
No, but she helped me so much more as well because she is just so smart and also so validating. And so it just. Every conversation is just so validating because it's almost like a quote, unquote trauma bond. Like, you know, I think it's cool that we live. We live, like, whatever, three or four hours apart, and. But yet we have matching scars. Like, I just think that is the coolest thing ever.
- [76:01]
A
And it really is.
- [76:04]
D
It's so incredibly validating to have somebody. You can be like, I'm having this weird thing going on. Is, did you go through this? And it's like, oh, that's normal. It'll pass. Yeah.
- [76:14]
B
Also say, like, how great it is to have your work actually, like, see it in action. Right. Like, Sasha, you did all this.
- [76:20]
D
Yeah. Research.
- [76:21]
B
And sometimes you do that and you put it out to the world and it sits on a shelf and nobody looks at it. Right. So I bet it's also also fairly nice to see that it. That it did something. You are the reason.
- [76:30]
D
Oh, my gosh.
- [76:31]
B
Absolutely no one was at her treatments covered.
- [76:35]
C
So, yes, If I think about it too hard, like, I will just start crying because again, like I've said, it feels like my pain had a purpose and it was something much bigger than just myself. And for that, it's just forever fulfilling.
- [76:51]
A
Yeah. And your story just underscores exactly why I started feel better in the first place. Because. Because for me, I recognize that both the patient experience and the doctor expertise is necessary to solving these problems. Right. Because, Nella, if you had never heard of the experience that Sasha went through, you would have never gotten to Dr. Hanson. Right. And Sasha, you first heard from the Facebook group, right, about the term sleeping room syndrome. And you never know know where that information is going to come from. And we. I talk all the time about taking that information with a grain of salt when it comes from sources that necessarily don't have a medical expertise. But I think the medical establishment does not value the patient experience enough. Because you have the breadth of experience. Right. You could probably tell me or I could look up what the incidence of slipping rib syndrome. And I'm sure, Sasha, you could name off the bat a thousand people, you know, who, you know personally who have this problem. Okay. And I can guarantee you that it is not rare. It is just rarely diagnosed.
- [78:05]
C
Exactly. Mic drop. No, that's like, seriously, it like. No, it's so true.
- [78:11]
D
Yeah.
- [78:13]
C
No, that's honestly so true. Like, that statement could not be truer. I live like in a fairly small area about like 20,000 people and just in me talking to random people. Like, one time I had walked into a store and I'm like, clearly in a lot of pain. And the store owner had come over, asked if I was okay. I was like, oh, it's a really long story. It's my rib cage, blah, blah, blah. And she starts asking questions. And this woman is about in her 60s, and, you know, she wanted to hear everything beginning to end, and she goes, I bet you I've had this since my twenties. She said, I know the exact day that I think that this happened. And just in my little area, there's at least five or more people who are positive that they have it. So, like, there is no way that this is rare. It's just really rare to find a diagnosis.
- [79:05]
B
And you both have Ehlers Danlosa, Right? Right. Do you both have.
- [79:09]
C
I have not actually been tested. I think I maybe am more like hsd, Hypermob spectrum Disorder. I've, you know, done the Beighton scale. I think that I think was like a 5 out of 9 or something. I don't Think I have Ehlers Danlos, but I'm on the hypermobility spectrum.
- [79:28]
D
That's something that we've heard in the Facebook group and such. There's lots of discussions about it. And it's often said that about 50% of people that end up getting the costal margin reconstruction have some kind of hypermobility disorder. It's often. There's often some kind of trauma that happens, but if you're predisposed to it, it's more likely to happen with hypermobility. But there are also people who are not hypermobile, who fall off of a horse or get into a car accident that this can be. Unfortunately. Yes.
- [79:55]
A
Yeah. Well, I want to thank both of you for taking the time to share your stories. And to me, it's really a story of hope and really a story of friendship between the two of you. Friendship that crosses borders and into different countries. But, you know, in your words, what does it mean to find someone who is going through the same thing that.
- [80:23]
C
You have been through? There's honestly not another feeling, I think, that can feel like this or even like really describe it, because you go through this almost alone. In some sense, yes. We both had our family and. And friends. But to be able to actually talk to someone who knows 100 what you're feeling is just a completely unmatched feeling because you can have that real raw conversation and. And just know exactly what they're talking about. Especially because this pain, the pain is so weird. It's multifaceted. There's so many layers to it, and it can have so many different symptoms. And so, sure, maybe my friend knows what back pain feels like, but they don't know what this back pain feels like. And so to be able to have another rock, essentially, in this and to be able to have those conversations and not have to mask anything is. It's just so important.
- [81:28]
D
It's just absolutely incredible to have somebody in your corner who also has gone through the exact same thing and when you might have seen it as well. Like, as we're talking here, we're tearing up at each other's stories because it's just like, we see it so much in ourselves that it's just like you can't control it. And when I was down in West Virginia getting my surgeries, I ended up meeting a few other women who got the surgeries that, you know, the same day or two days. We're all usually there for about five days to a week. And you end up making friends with the people who are there in the Same hotel and more trauma bonds there. But we end up having these side Facebook chats where we're going through our recovery milestones and how we're doing and cheering each other's on. And it's just absolutely, it's such a great community that once you find it, you're like, oh my God, this is amazing. But getting there is a really tough journey.
- [82:18]
A
Well, you two both being on this podcast hopefully is going to help shortcut the journey for many people. Thank you guys both for coming and yeah, thank you.
- [82:28]
C
It's a pleasure.
- [82:29]
B
Thank you so much.
- [82:30]
C
Much less.
- [82:36]
A
This is probably one of my most favorite episodes because there's not a lot of times where you can see joy in people who are discussing their illness. And when I was watching Nella and Sasha talk and they mentioned themselves, right, they were tearing up at each other's stories because they have such a deep connection and they had so much pride in listening to one another's stories because they cheer each other on, they bounce ideas off of each other. And I know that a lot of people who listen to this show feel like they are so alone when they are going through these medical diagnostic journey. And I hope that being part of this Medical Detectives kind of family makes you feel a little bit less alone. And I think that the platforms that exist right now, TikTok and Instagram and Facebook, they are really helpful due to the scale of the people who are using those platforms and finding people, as I said earlier, it's part of why I built Feel Better because I believe that for the vast majority of diseases, they are not rare, they are just rarely diagnosed. And you should be able to find someone, whether it's someone locally or in your same state or your same country or on this planet, who is going through the same thing that you are going through. So it was an absolute honor and pleasure to speak with both Sasha and Nella. I mean, what an example, right? Sasha shows that one. One person can make such a huge difference, can literally take on the government of Canada. I cannot stress how impressive that was that the work that Sasha did led to changes in a government form for the better. Which kudos to Canada for actually having someone point out the problem and then fixing it to make it more accessible and make that process easier for Canadians. So I learned so much from this episode. I hope you did too. And I can't wait for next week. Thanks for listening.
- [85:08]
B
The Medical Detectives is a soft skills media production produced by Molly Biss Sound design by Shane Drau if you have a medical story, you'd like to see featured on the Medical Detectives, please email it to stories themedical detectives podcast.com the.
- [85:24]
E
Information provided on the Medical Detectives is for informational and entertainment purposes only and should not be considered medical advice. While we may feature licensed medical professionals, including doctors, we are not your personal doctors and no doctor patient relationship is established by listening to this podcast or interacting with our contact content. All discussions are general in nature and may not apply to your specific health situation. Always seek the advice of a qualified healthcare professional before making any medical decisions or taking any action based on the content of this podcast. Never disregard professional medical advice or delay seeking treatment because of something you have heard on this show. If you are experiencing a medical emergency, please contact emergency services immediately or consult a qualified healthcare provider.