What is TOS anyway?
Hi I’m Re and I have Thoracic Outlet Syndrome better known as TOS.
What is it? well, it was a mystery to me at first too! (and I work in healthcare🩺).
Admittedly reluctant to share my story. It’s kind of a weird place to be as a healthcare provider being on the other side of things. I ask my patients to share their story everyday. In fact I ask them to give me every detail so I can formulate decisions based on their clinical situation. Though this is a safe space (at least I strive for it to be). I can’t help but have a deeper level of appreciation for how brave folks are for sharing their stories. I decided try my hand at taking a page from the book of bravery to share some of my story when it comes to TOS.
**I also want to caveat this post with a “it could have been worse” as I am truly grateful to have found the help I needed and I was not in a immediate life threatening situation. It brought me back to my days working in the Emergency Department; CTAS score of about a 4…. walking “well” could probably wait awhile….and that I did.
Deep breath.
Here we go.
Physiology behind TOS
Lets go over the science stuff first (mostly taken from here) I will try to drop 💡 sources, and bits of 📣 reflection that I found useful on this journey throughout this post in hopes it helps others who are on the start of their fact finding journey;
Generally, thoracic outlet syndrome (TOS) is a group of rare conditions that involve compression of the nerves or blood vessels that pass through the base of the neck and behind the collarbone on the way to serve the arm and hand.
TOS can be subdivided into three separate conditions caused by compression of a group of nerves or artery:
Arterial TOS (compression of the axillary-subclavian artery)
Neurogenic TOS (compression of the brachial plexus nerves)
Venous TOS (compression of the axillary-subclavian vein) (**this is the type I was dealing with)
Here is a helpful video on it
Wait…did you say Blood Clot?
It’s been a tumultuous journey in getting treatment and learning about what the symptoms of TOS were and how they were presenting in my body. For me the symptoms started after using a spin bike where I was using light weights in a repetitive overhead motion. My left arm was sore but I brushed it off as a strained muscle. Rest, Ice, Advil on repeat. A couple days had passed and the pain persisted, now with a bulging vein on the inside of my arm making itself known. I know what your thinking, Re…. its obviously because your so jacked 💪 its just a normal thing for people who workout a lot… its that OR you might have something compressing your blood vessels backing up blood flow…hmmm yup… that would be…awkward. I did what any sane healthcare provider patient would do…I ignored it for another week lol
**📣 This was a major moment of reflection for me, a reminder; listen to the warning signs and take a moment to investigate them.
I reluctantly decided to take a tele-visit (which was faster than accessing my family doctor) on the advice of my partner & friends. I thought to myself …maybe its just a muscle strain? The tele-doctor ordered an ultrasound for my arm which was great but…. unfortunately I quickly found out that vascular ultrasounds are not common practice in the community; most times Ultrasound centres don’t have the technicians to perform it. Vascular ultrasounds happen in hospital and the wait time was a month for for mine. This was the start of my fairly rocky journey with navigating the healthcare system.
**For context, I live in Toronto , with major healthcare institutions nearby in Ontario. It was also 2022 so facilities were still in pandemic recovery mode. Luckily I have a wonderful sports medicine physician who I would regularly see for my right shoulder (I will forever be grateful to Dr. Alrawri and UHN’s Altum clinic for its care). He heard my symptoms, performed an assessment and sent me for an urgent vascular ultrasound…which then led to the emergency department.
Two blood clots were found in my left arm (later a third would be found on repeat imaging); subclavian, cephalic and auxiliary…cool…cool…cool.. that sounds bad 👀. As I sat in the busy waiting room at an ER that I once worked in, I thought ot myself….. We are all just human beings, trying our best, dealing with stuff beneath the surface. What we share on social media only scrapes the surface of what people are actually going through.
I was comforted by a familiar face in the ER and was very lucky I knew who my team was. After the Emergency department I was referred onwards to a thrombosis clinic, a specialized service that cares for blood clotting or anticoagulation issues, where I would start anticoagulation (blood thinners). 💡Thrombosis Canada resource.
From that point forward I would be treated with 6 months of tinzaparin(injection blood thinner) and a maybe a lifetime of xeralto ( determining this was not the smoothest journey…but we got there…eventually) While being on waitlist to see the vascular surgeon. In my case, I was too subacute (just well enough) for any other intervention (thrombolytics or surgery).
Enter my ‘Waiting Game Era’
**I’m not Taylor swift but I definitely resonated with the idea of different ‘eras’ of this journey. Each bringing a new layer of self reflection, advocacy and new learnings. Plus…its more fun this way 💅
Back to the story: On average, in Ontario it can take about 90 days (or less if life threatening of course) to a year to see a vascular surgeon depending on your concern. <Trust me the surgeons want to see you, it’s more of a systems and a capacity issue vs. individual surgeon issue>. Issues are triaged based on the level of happen to be young, without other health conditions and being treated conservatively so I could wait…and wait I did.
💡 Here is an example of what triaging means and what it looks like in emergencies. Diagnosed in March 2022, I received my first appointment to see the surgeon in June 2022 (in transparency; with pulling a few strings).
⏰ Now to give you insights to why the wait; the clinic requires an interdicipliary team to be present with all (2) staff vascular surgeons present at the same time (which is a feat of strength to arrange because scheduling can be a hurdle). TOS is such a niche issue as well, it tends to fall by the way side. I was told only 4 surgeons treat this issue in Ontario; two of them being at the institution I was being seen at. I would not see the surgeon in follow up again until over a year later in 2023 because I once again was; young, without other health conditions and being treated conservatively (on blood thinners).
In the meantime, I was searching for ways to address the growing discomfort in my arm, neck and hands. I could just stretch and exercise this out right? 👀 Quiet adjustments started to happen; declining certain physical activities like going for bike rides with friends or playing any sport involving the risk of straining my arm or getting hit . Looser clothing and strictly long sleeves. Withdrawing from social occasions because stuff just didn’t quite fit anymore in my closet and quiet self doubt. Starting to loose elements of yourself because “you look so well” and “your managing” .
📣 I kept thinking to myself ‘Was there anything actually wrong with me?’ I felt like I was convincing everyone around me that I was fine while simultaneously invalidating that there was something actually pretty serious going on. Even to this day I feel the need to down play what I’m feeling. It’s true I am managing, but does that mean acceptance of going from an acute issue to a compounding chronic syndrome? Working in healthcare I’ve always known the song of advocacy. Why was it so difficult to have my voice heard for myself? There are a couple things that helped me cope through the situation.
Physiotherapy was one of them.
I cannot express enough how physiotherapy has helped me learn new ways of moving and dealing with symptoms. Shout out to my PT Isabelle at Myodetox . She immediately understood what TOS was and was on board to helped me find ways to cope. I continue to go to PT and am thankful I can afford it. Many of you might know PT is an out of pocket cost if you don’t have coverage (wild to think that you might work in healthcare, under contract and not have extended care coverage).
More PT resources
Enter my ‘Advocacy Era’
I am quite fortunate to have a partner, family and friends who sought out all the research they could once I received the diagnosis. I had been looking at the work that been done in the United States around TOS; research studies, technology as well as surgeons (yes plural) who specialize in this area. As a Canadian I was torn at the thought of a second opinion. I was receiving high quality care here.. why would I need a second opinion? well..the wait was why. After much research we found Dr. Lum’s clinic, John Hopkins Hospital in Baltimore. I was in awe of this work of Dr. Lum and his practice. It was the first time I felt like what I was experiencing was valid. After almost a year of fact finding, I landed in a place that finally understood me. I under estimated the impact of the emotional and physical validation. My nervous system felt its first sigh of relief. Now I completely understand my situation is unique in that I was able to seek care outside the Canadian system. However, what’s not unique is the effort it takes to advocate, research and prioritize my health. These are all things I would tell my patients…but never listened to myself.
Enter my ‘Healing Era’
After almost two years of several diagnostic tests; venograms, ultrasounds, duplex scans, VQ scans, blood thinners, one allergic reaction, physiotherapy and multiple specialist visits I was able to receive the intervention I needed for my Venous TOS.
In January 2024 I had a first rib resection and a scalectomy (removal of my first rib & muscle to free up space ). I am on the journey of healing and remain a strong advocate of physiotherapy in improving my quality of life. I am incredibly grateful to my family, friends and my partner for giving me so my strength through this process. I am thankful to the the clinicians at John Hopkins and Dr. Lum took a chance on a young woman, who was quietly struggling to find answers about what was going on with her health…. and no I didn’t win a grammy BUT this was my Eras tour.. so your going to get the thank you speech.. you’re welcome 💅
📣 This was my final reminder and an important one; its ok to ask for help, to check in with the people you love and find ways to express how you actually feel (even if it’s super messy).
I’m sharing this not for sympathy but rather collective empathy. I hope that the person reading this might have learned something new.
And if you have TOS or an invisible syndrome.
I see you and I feel you ✨
As I write this last paragraph, I want to thank you for reading this until the end. This journey is still not over yet, but it feels incredible to feel seen. If this is something you’re going through as well, please reach out I am happy to provide any support I can.
With so much love,
Re ✨
