It feels impossible to give this update without giving quite a bit of background as to how we got here. My story doesn’t start a year ago or four years ago or 10 years ago realistically, it starts basically from when I was born.
A very condensed childhood history: From a young age, I missed out on things like summer camp and sleepovers because I wet the bed until late elementary school (how’s that for a fun intro, bedwetting Bethany). I quit gymnastics in elementary school as well because of low back pain, and don’t remember a time in my life where headaches and joint pain weren’t part of my reality. These issues were brought up with my family doctor with few answers beyond “anxiety” and “growing pains”. Despite these things, my life felt relatively “normal”. I experienced random bouts of illness most years that would lead to an ER visit for IV fluids and gravel injections to deal with intense vomitting, but mostly this all just led to a lot of weird medical encounters that made for good stories. I honestly didn’t think that this was that abnormal, and because the doctors told my parents that everything was fine, there wasn’t much they could do either.
My health was relatively stable throughout junior high and high school, aside from some pretty significant stomach issues and excessive nose bleeds…which were incredibly inconvenient, but didn’t significantly get in the way of me living my life. “Puke and rally” was a motto I lived by.
Around grade 11 my mom ended up in the ER herself because of a fainting issue and the doctor asked her if she had ever heard about POTS. After doing a bit of reading online, my mom figured this likely explained the symptoms that both of us were experiencing. But everything online said there wasn’t much you could do about POTS, and we knew it wasn’t considered deadly…so we both kept living our lives without seeking out any kind of official diagnosis. Over the next few years, it’s something I mostly forgot about it.
While in university I started experiencing serious episodes of dizziness and trouble concentrating, as well as intense fatigue. The answer: anxiety and ADHD. These aren’t diagnoses that I reject at this point, but they definitely didn’t explain the whole picture. I accepted my doctor’s advice to start a low dose of an anti anxiety medication and to my surprise I started sleeping better…a huge win amidst the crushing fatigue I was experiencing. Around the same time I also started ADHD stimulants. One day around this time, I told a friend in med school that I felt like I was having trouble breathing… he suggested I go get checked out by a doctor because my heart rate was alarmingly high. After a number of hospital visits and a 24 heart rate monitor I was left with little answers beyond “ anxiety” and stopped searching (by this point I was off the ADHD meds as they seemed to be partially contributing to the heart rate and breathing issues).
The concussion era: In 2017, I experienced a pretty bad concussion and whiplash from a snowboarding accident. This was the first big “shift” in my life…I started struggling to keep up with friends in ways I used to, and really started feeling like I was disappointing people because I wasn’t able to show up in ways I had in the past. I spent countless hours doing physical therapy and vision therapy, as well as a number of alternative treatments – I was desperately seeking answers, and although certain things helped move the needle a tiny bit, nothing got me to the point where I was living without headaches and neck pain on a daily basis. Eventually things stabilized enough that I was able to work and participate in life again in a mostly “normal” way. At this point I stopped seeking care and just managed my symptoms (pain, nausea, trouble breathing, rapid heart rate, dizziness, fatigue, brain fog) on my own. I genuinely didn’t think there was anything else that anyone could do. I’d seen my mom experience chronic pain throughout my whole life and had definitely normalized it.
Over the years I have heard things like, “you are the worst kind of patient because you have some legitimate issues, but mostly you’re just the hypochondriac” or “there’s no way there are that many things wrong with you” or “look who decided to finally show up” or of course, “it’s just anxiety”. (Note: there are comments like these that have been made by friends and family that I know were not said out of harm…we’re all learning how to navigate this together, I’m not trying to make people I care about feel bad but rather teach people a little bit more about my experiences). Because of comments like these, seeking medical care and sharing the degree to which my symptoms have affected me has become something that I have a very hard time doing at times. The emotional impacts of this have been significant as I’ve struggled to know who I can trust… does everyone around me think that I am too much? Does everyone assume that I am exaggerating my symptoms to get attention? Does everyone assume that this is all psychosomatic?
Obviously, we now know that the underlying cause of all of these random medical challenges is EDS… which brings me to an important part of this update – the moments leading up to my EDS diagnosis.
Sasha and I were on a road trip in late 2019. Overall, I was feeling decent. At this point in my life I definitely didn’t consider myself “ chronically ill” – I hardly understood what that concept meant. There wasn’t much that I refrained from doing aside from eating a few foods and sitting in certain positions for too long (because of my neck/shoulder/head pain getting worse). For whatever reason, my health issues started getting worse on that trip. By the time we got home I had this weird bacteria overgrowth in my mouth…it was (and still is) a gross problem. I’d also discovered a lump in my breast (presumably unrelated to everything else happening) and decided that enough things were piling up that I should really go to the doctor. The lump…that’s a whole other story for another time (I don’t have cancer). The other symptoms…My doctor told me she was quite convinced that they were coming from unmanaged anxiety and ADHD. Same old, but I didn’t reject this given we had just moved to Alberta, and there were reports looming about an impending pandemic. I was hesitant to try ADHD medication again, but my doctor told me there was a new medication she figured would work well. I gave it a shot and the cognitive effects of it were pretty amazing, – I was able to focus like never before. Unfortunately though, nothing was changing with my stomach and bacteria overgrowth issues. Then I started experiencing a deep depression. Things got pretty bad and after breaking down crying at a massage therapy appointment (something I was doing pretty regularly to help manage the significant pain I was experiencing), my massage therapist asked if I would like to try and see her friend who was a family doctor. Yes, yes, yes – I needed help from someone who was a little more empathic than my current family doctor whose only ideas were medication increases and journaling (I’m pro journaling and all, but I needed a lot more than that).
Through my new family doctor, I was connected with a psychiatrist (if you’ve heard me rave about Dr. Carl Adrian from Cochrane, this is who I’m talking about). We took all kinds of approaches while I saw him, from medications to various therapies. At this point I was also convinced that all of my symptoms must be psychosomatic…especially because of the deep, deep depression I was experiencing. What continued to stump Dr. Adrian was my medication responses…I wasn’t responding like an average patient.
Fast forward to summer 2021, Sasha and I decided to move back to Winnipeg to be closer to my family. By fall 2021, I was experiencing physical symptoms like never before. Low temperature verging on hypothermia, trouble with my vision, muscle twitching/body shaking, wild bouts of dizziness, and of course the intense pain and nausea/vomiting that I had grown so accustomed to. After a particularly challenging few days, I ended up deciding to go to urgent care. When asked what I was there for, I struggled to know what to say… “Um, I just feel really sick.” I went on to describe all of my physical symptoms and told the triage nurse that I was also actively seeing a psychiatrist to figure out a treatment plan for my deep depression – I believe that this action right here has influenced the trajectory of my care to this day, as it once again labelled me as a psychosomatic patient.
What started out as a visit where I naively assumed I would finally have answers for everything happening, turned into one of the scariest medical experiences I’ve had to date. I was lying in a room waiting for the doctor to come see me, when I started experiencing intense tingling all over my body. I was by myself because of Covid, so I decided to press the call button. Suddenly my hands started uncontrollably clenching and I started screaming from excruciating pain – I had no control over my muscles as my hands clenched together… not even the nurses could pry my hands open. I don’t know if I’ll ever be able to articulate this experience…I genuinely thought I was dying. I woke up to a confused doctor, with no clue what to do with me. I had a stutter, was struggling to use my left arm/hand, and had trouble walking. They took me seriously enough to send me to the ER (HSC) to see a neurologist, but they still made notes in my file related to psychosomatic symptoms…this was documented in my files for the neurologist at HSC (after all, I had admitted I was depressed).
Once at HSC, the neurologist saw me and was very confused about my symptoms (fair). After determining that nothing was too serious, I was sent home with a referral for an urgent outpatient brain and spine MRI. The following day, I was at home on the couch when my body started experiencing intense tingling again. I told Sasha and he started monitoring my heart rate as my body started going more limp. I didn’t experience the same muscle contractions as I had at the hospital, but I was unable to speak and could hardly move. My heart rate started climbing, and Sasha called 911. The paramedics coded it as a stroke, sending me straight into the resuscitation room at HSC. Like every doctor I’ve talked to, I’m still confused about what happened here…likely some kind of autonomic storm…but it wasn’t a stroke. I ended up getting my MRI pretty quick and when it came back as normal, psychiatry was called. I tried to tell the psychiatrist that I believed that something was physically wrong with me, and I was frustrated that no one was taking me seriously. This resulted in a report that permanently lives on my hospital files for other doctors in Manitoba to see: “she demonstrates a fixation on somatic symptoms without awareness of worried thoughts”. I was discharged with a follow up appointment with a neurologist, and a recommendation to find a psychiatrist in Manitoba.
Once home, my psychiatrist from Alberta was able to see me for one final consult. I navigated that appointment with a stutter, and was met with empathy I had definitely not experienced from the ER docs over the previous few days (I do recognize the immense pressure ER docs face, particularly at that time when covid was rampant). He asked me about whether I could bend my joints in certain ways…yes. He told me that I needed to ask doctors in Manitoba to investigate something called Ehlers Danlos syndrome (EDS). And then he told me that I was going to need to fight for my care, knowing the discrimination that EDS patients so often face. He told me about someone whose symptoms were dismissed for so long that they ended up having a stroke which led to permanent mobility challenges. Following that appointment he sent me a discharge paper as he was no longer able to treat me out of province. The discharge paper said that my neurological symptoms were medical until proven otherwise.
As soon as I hung up the call, I googled EDS and was met with all kinds of scary things. I was so focussed on whether or not I was going to die young, that everything he said to me about how hard it was going to be for me to get care really didn’t sink in.
Immediately I made a follow up appointment with the family Doctor in Winnipeg who I had already been seeing prior to leaving Manitoba, and went off my ADHD medication based on a recommendation from both the ER docs and my psychiatrist. Miraculously, the deep depression I had been experiencing was lifted almost immediately.
Thankfully, my family doctor actually knew a bit about EDS (huge win). She also felt that this likely was in fact the underlying cause of everything happening. The problem was she didn’t know what sub-type, which would help us understand common comorbidities. At this point she started sending off a ton of referrals to specialists who might be able to help figure out exactly what we could do to improve my symptoms. Eventually my stutter resolved itself, and my left arm/hand problems resolved enough to start using them again.
Here’s where I feel like it’s important to add a bit more context as to what EDS is. It’s a connective tissue disorder that can cause all kinds of intense comorbidities/health complications because basically all joints and organs in our bodies are made up of connective tissues. Connective tissue is like the structural framework for our whole bodies. EDS itself isn’t really the thing causing the debilitating symptoms, it’s all of the comorbidities that come along with having faulty connective tissue. There are treatments to help manage most of the comorbidities…the challenge is just that most “common” comorbidities that EDS patients experience (beyond general joint instability) are not well understood by most doctors.
In between appointments with doctors and various practitioners to try different treatment options, I still managed to get out of the house a decent amount and was able to work and prepare my own food. There were a number of times over this period where my legs gave out on me and I wasn’t able to walk without assistance, but for the most part I was always still able to sit upright…and my legs would always get back to the point where I could walk again. There were a number of periods throughout this time where I was even able to go for short bike rides and attend longer events. Over this period, I did a ton of my own research about EDS comorbidities, and connected with others online navigating similar health complications. I got to the point where I was pretty convinced that I had either instability in my cervical spine, a tethered cord, or a Chiari Malformation. Most specialists I asked about this said that wasn’t possible…I kept hearing things like, “if you had that you would be way more sick” or “ we would see that on your imaging”. At this point what I didn’t understand was that these issues present on imaging differently in patients with connective tissue disorders, and you need upright and/or dynamic imaging to capture what’s happening…imaging technology we don’t have here in Manitoba.
Fast forward to fall 2024, when suddenly things with my health started going downhill fast. My walking issues were amplified to the point where I needed a wheelchair to walk extended distances, I was experiencing significant air hunger (not able to get enough air into my body), and I started really struggling to sit upright. I was no longer able to attend meetings and events for work, and was cancelling plans with friends and family like never before. Prior to this I had accepted not finding answers about the “root cause” of what was causing all of my symptoms, I had accepted living in the state for the rest of my life. Come fall 2024 I no longer felt that way…I couldn’t keep living like this.
Late 2024 & 2025 (current): I met with the one specialist in Manitoba who hadn’t given up on searching for answers with me (my Sports Med Doc), and we both agreed it was worth consulting with one of the few specialists in the world who has experience working with EDS patients who have instability in their necks (in Colorado). I chose one whose approach focuses on regenerative medicine rather than invasive surgery to fuse the spine. His clinic requested that I get a Digital Motion Xray, so Sasha and I drove down to Minneapolis in October 2024 for the scan as this was where the closest Digital Motion Xray machine is located. At this point I already knew a neck brace helped with my symptoms and figured I likely had some mild instability and would be able to get a few stem cell injections and be back on my feet. This scan was the beginning of many conversations related to the severity of my case…there were two technicians doing the scan. Partway through they both said they couldn’t believe what they were seeing…they had never seen someone’s C1 slide out so far. I started crying…it was the first time in my life someone had confirmed that there was a structural reason for all of my symptoms. But I still convinced myself that things weren’t that bad, especially since neither of them were doctors.
That Digital Motion Xray was sent off to my doctor in Colorado, and we had a Zoom call a few weeks later…the point about my case being pretty severe was once again repeated. In the same call he said to me, “has anyone ever told you that you also have a Chiari Malformation”? Oof. I was hoping for just one of the three things I was concerned about, not two. We decided to schedule an invasive stem cell procedure where they injected stem cells directly into the damaged ligaments in my neck through the back of my throat. This is the procedure I got done last December. By this point I had learnt more about decompression surgery to make more room in the brain for my sagging brain (Chiari Malformation), as well as fusion surgery to screw the cervical spine to the base of my skull. I was scared out of my mind reading about complications in EDS patients and remember telling Sasha and my parents I would never be pursuing these surgeries. I was so determined that stem cells alone would be enough given some of the incredible success stories I had read.
Recovery from the procedure was rough, but I had a period where things definitely improved a bit. I was sitting upright more and remember having moments where the pain was incredibly manageable. After a few weeks of this, the low back pain I had experienced my whole life started getting a lot worse. And I started having more bladder and bowel issues. I knew what this was a sign of…tethered cord (when the tissue in the spinal canal attaches to the spinal cord). I brought this up with my team in Colorado who quickly dismissed it, saying that the answer to what was happening was likely a herniated disc that I had known about for the past few years (which none of my doctors in Manitoba were concerned about). I quickly became frustrated at the lack of agreement between doctors and decided to seek out some neurosurgeon opinions. Knowing that most neurosurgeons who work with complex EDS patients require patients to have an upright MRI before they take you on as a patient, Sasha and I travelled to BC where Canada’s only upright MRI machine is located. I got the scan and sent all of my images over to Dr. Gilete, a neurosurgeon in Spain working with some of the world’s most complex spine cases. He is incredibly empathetic and out of all doctors I’ve seen, he’s hands down the one that understands what’s happening the most and asks about symptoms before I even bring them up. Seeing him has been validating, hopeful…and scary because he’s been honest about how bad the instability in my neck is. It’s not just around C1-C3 like we thought (although these areas are the worst), I also have instability below that. He said that the Chiari Malformation is acquired as a result of everything else happening in my spine (he doesn’t even call it a true Chiari, he said it’s a herniating of my brain happening as a result of the other issues in my spine). He also said that he suspected that I had a tethered cord, but that we would need another special MRI to know for sure. Whether I had a tethered cord or not, he told me that he did not believe stem cells would be enough to deal with my level of instability. He told me that I needed fusion surgery.
You still with me? I recognize this is so much to follow. At this point I have a diagnosis of instability throughout my cervical spine, herniation of my brain (that only shows up on imaging in certain positions because of my instability), a pesky little disc herniation that is confusing people, and a suspected tethered cord. I’ve tried one stem cell procedure which gave me some relief for a bit, but not for long.
Knowing all of these diagnoses, my Sports Medicine Doc in Winnipeg referred me to a local neurosurgeon. Remember, at this point, all of the reports from local ER doctors and neurologists still indicate that my symptoms are psychosomatic and/or a result of anxiety. My sister (Katie) and I went to this appointment this past May and we were met with an incredibly empathetic and understanding nurse at the spine clinic at HSC. We explained everything that had been happening, and she even went as far as to take “ anxiety” off of my medical records. Unfortunately, the neurosurgeon that I met with had already read my files and seen what other specialists had written. I tried to show him the report from my neurosurgeon in Spain, but he brushed it off as an out of country surgeon trying to make money off of Canadians. I tried to explain to him everything that had been happening and Katie tried to personalize everything, painting a picture of someone who was previously active and skiing and living a relatively able-bodied life. He spent a few minutes glancing at the out of province imaging I had brought for him, but not enough to really understand anything it was showing (I have been told that most doctors have not been trained to read these specialized scans, particularly in EDS patients). He then pulled up my local imaging on his screen and I listened while he went over every part of my spine, telling me that nothing he was seeing would explain my symptoms. At this point, it was clear he was not interested in learning more about what I was trying to share with him. He said that going for an invasive fusion surgery would be a terrible idea that would make me worse. I then asked him what he figured was causing all of my symptoms, and he looked me in the eye and told me that I needed to accept that it was primarily psychosomatic. I immediately started crying and was unable to continue engaging with him. My sister spent some more time with him advocating on my behalf, while I went to another room with the nurse… I had asked if she could stay in the room for the consult with the neurosurgeon, because I was so afraid of being dismissed. I cried as I told her about others in my position across Canada who, like me, have been unable to access care because we are continually getting dismissed as being patients with psychosomatic disorders. I told her about others who have progressed worse than me, who have deteriorated to the point where they are relying on oxygen and experiencing full body paralysis, as well as an inability to consume food orally. Katie did an incredible job of advocating on my behalf, but despite her efforts, the neurosurgeon still proceeded to send a letter to the other doctors on my team with a pretty hurtful rhetoric related to my unwillingness to accept that my symptoms are psychosomatic. Although I was in no way interested in having a surgeon without experience working on my case, I need a neurosurgeon from Manitoba to sign off on my case in order to have out of country treatment covered by Manitoba Health.
It’s around this time that I got pneumonia which wrecked me physically and emotionally. I couldn’t sleep from the coughing, I was vomiting from the coughing, I was choking on the vomit, I was putting joints out of place from the coughing, and worst of all… coughing, and vomiting is extra awful when you have compression around your brain stem and instability in your neck. At this point, my plan was still to have my second stem cell procedure… I didn’t want to believe the neurosurgeon in Spain. I had this procedure scheduled to happen on the same trip I was going down to the US to get a special MRI that looks specifically for tethered cord. We had this trip all planned, but after doing more research, I started feeling really uneasy about the stem cells given how much worse my low back pain had gotten since my initial treatment. In addition to this, I started questioning whether stem cells would be enough given how many people had told me how severe my cervical instability was…and what my neurosurgeon in Spain had told me.
Long story short, I decided to hold off on that stem cell procedure, but we still went on that trip to get my MRI. I have since gotten a few more opinions and the MRI that I got on my low back confirmed that I do have a tethered cord.
Where does this leave us now? The past few months have been heavy, heavy, heavy. Sasha and I are both fucking scared. My neurosurgeon in Spain is worried about us putting surgery off and me not being able to physically get there in any way other than a medivac plane with a care team due to my symptoms continually worsening. I am no longer able to do basic tasks like make meals and clean the house because I am unable to be upright for long because my pain and breathing issues become intense, and I feel like I am going to pass out (this improves significantly when I lie down).
Digesting food continues to be a struggle, although I did start a medication that is assisting with my food reactions a little bit. I do feel confident that I will be able to avoid a feeding tube. I have started regular IV therapy to get electrolytes in because of my issues with absorption/digestion, and I just got my first oxygen machine to assist with all of my breathing difficulties. I am on way more medication than I want to be to help try and manage the pain, breathing challenges, digestion challenges, fatigue, and all the other confusing symptoms that come along with brain stem compression and nerve damage in your spine.
My family doctor here in Winnipeg and my Sports Medicine Doc, both believe that I need to do everything I can to privately pay for surgery based on the timeline that my surgeon in Spain is recommending, and they will support me afterwards to receive follow up care in Manitoba as well as fight Manitoba Health to help cover some of the cost postoperatively.
There are a few more scans that my neurosurgeon wants to do to make a final decision related to how the surgery will be performed, but right now what he is recommending is to cut my spinal cord away from my spinal canal (to deal with the tethered cord) and screw my skull to the top of my spine (to deal with the instability) all in one massive surgery. His office has already started working with the various medical teams that would need to be involved in the surgery and the plan right now is that I will be going to Barcelona at the end of September to do final testing, and then I will have surgery at the beginning of October. The first couple of days will be spent in the ICU, followed by a week or so in the hospital, and then recovery time in a hotel before flying home. If all goes well, I will be in Barcelona for 4 to 6 weeks.
I am beyond grateful for everyone who continues to support me despite my inability to leave the couch most of the time. I am beyond grateful for everyone who continues to check in, sending me messages about how you’re thinking of me and ways that you want to support me and Sasha. Wow, wow, wow, I genuinely cannot imagine doing this without a supportive community as I navigate ongoing trauma related to my experiences with the medical system (which has left me quite fearful about how others perceive my medical problems).
I’m finally starting to feel more comfortable sharing my story, as I become more confident in believing that these symptoms are not psychosomatic and that they are not my fault. I will continue to share updates here as I have capacity.
How can you help right now? I am just in the process of figuring that out (including answers to the big question: how are we going to pay for this surgery). I obviously can’t do any of this on my own, and will be sharing more in the coming days about what would be most helpful right now.