what it feels like: 'life is different for me now' with thoracic outlet syndrome
9 minute read
"sydney (pictured above) is a great advocate for herself," says her mom, heather. supplied
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sydney gill, 23, had been experiencing pain and tingling in her right arm since she was just nine years old. being told it was likely growing pains, sydney learned to live with the bouts of pain and tingling until she broke her collarbone in 2015. after that, the pain in her arm became constant, and she was finally diagnosed with thoracic outlet syndrome.
thoracic outlet syndrome (tos) is a rare condition where the nerves or blood vessels in the thoracic outlet (the area between your collarbone and your first rib) are compressed too tightly in the narrow space. symptoms depend on what is being compressed — nerves or blood vessels — and include pain, weakness, numbness, discolouration or tingling in the neck, shoulder, arm, or hand.
only one to three people per 100,000 will be diagnosed with tos each year. causes of toc typically include major trauma, like a car accident; injuries from repetitive movement in work or sports; and structural causes, like the presence of an extra rib.
sydney and her mom, heather, sat down with healthing to talk about the surprise of learning sydney had an extra set of ribs, being told sydney just “had to try harder” and there was nothing more that could be done, and the glimmer of hope they found more than 700 km away.
what led to your diagnosis, sydney?
sydney: i started having intermittent pain in my right arm once every couple of weeks. when i was nine years old, it progressed to a couple of times a week. the doctors said it’s just growing pains and was nothing to worry about. i also had symptoms where i felt like i couldn’t breathe. [the doctors] gave me a puffer. they thought it was asthma.
another really weird symptom was i had very obsessive hiccups. i would have hiccups multiple times a day. but it wasn’t until i fell off my horse and broke my collarbone that things really progressed and became much worse.
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what happened when you broke your collarbone?
s: by the next day, the pain in my right arm was worse than the break pain. breaking a collarbone is very painful, because you can’t set it — it’s not like a broken arm that you can put in a cast. and the nerve pain in my right arm was worse than that pain.
it was the same kind of pain [i had been experiencing before], it was just much worse. so, we knew that something was going on — especially because the collarbone break was on the left side and the pain was on the right side.
we saw the orthopedic surgeon for my broken collarbone, and we mentioned the pain. he said that it was probably tos [and sent me for] some imaging and nerve conduction tests. he ended up being right.
what is a nerve conduction test?
s: it’s a very painful procedure. needles that can conduct electricity are put into your arm, or wherever is being tested, and electricity is sent through the muscle.
h: through the nerve to see how the nerve reacts.
s: i had to do it quite a few times and i was pretty young — i was 16 and 17. so, i wasn’t a little kid, but i was still young and it was scary because it’s quite an invasive procedure.
what did the imaging tests show?
s: the mri and the ct scan showed that i had cervical ribs, which are an extra pair of ribs that come around my neck and were pressing on the thoracic outlet.
what was going through your head when you hear that you have this extra set of ribs?
s: i was kind of relieved that they were able to figure out a cause for the pain, and that i wasn’t just crazy or imagining it or thinking that it’s not as bad as it is. but i was also nervous to see what was to come and that there might be a lot of surgeries in my future — that’s a scary thing to face.
h: before sydney’s collarbone-break, she was very active, very busy doing things all the time. she’s a hard worker and an outdoor person. we went from going to horseback riding lessons to seeing the doctors and [getting tests done]. i’m not sure how that was for sydney, but it was certainly hard for the family.
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s: i also was an honours student through grade 9 and 10, and then i began failing courses and not being able to keep up with my studies. so it really was a big change for me affecting every aspect of my life.
how did you juggle this diagnosis with school?
s: i didn’t finish high school until 2020. i put off my studies because i was having surgeries and i was getting worse. i was able to finish through a general education development certificate in june 2020.
h: basically, she was having surgeries every year throughout high school on top of all the medications. unfortunately, none of those treatments were helping and so, by the fall of 2018, she needed a wheelchair [because] the pain was so great, and the medications were really debilitating.
s: i couldn’t really support my neck, it was very weak, so i had to have a full back wheelchair to rest my head on.
what was the treatment after you got your diagnosis?
s: i had three surgeries here in canada. unfortunately, canada doesn’t really have the infrastructure for a specialist team for thoracic outlet syndrome, so the surgeries were incomplete. i actually ended up worse, so the real treatment happened when i went down to mass general brigham hospital and had the complete resection of my cervical rib and my first rib. we really have to credit dr. dean donahue for taking a complicated case and really turning it around.
dr. donahue and sydney at mass general brigham hospital. supplied
what was the goal of surgery?
s: it was to relieve the pressure on the thoracic outlet. we believed that it was just compression on my nerve, but when [dr. donahue] got in there, he discovered that there was pressure on the subclavian artery as well. so, if that was left, i would be at risk for blood clots and then that can turn into a pulmonary embolism or stroke or heart attack. so, it wasn’t just the severity of the pain, but it was a life and death scenario as well that we weren’t aware of.
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after the initial surgeries here in canada, you felt worse?
s: yes, unfortunately the rib was just partially removed, and it grew back into the nerve and got tangled. it’s of no fault of the surgeons here, it’s just there’s no real infrastructure for a specialist. and it’s just the importance of seeing a specialist.
how did you get connected to dr. donahue?
h: after three surgeries and a bunch of failed procedures and drug management, we realized that had reached the end of the road in terms of treatment options in ontario. we started looking outside of canada. we weren’t ok with that she had to live with severe pain and disability for the rest of her life.
our daughter’s in a wheelchair. she’s in severe pain. she’s heavily medicated. this is not the life that we want for her. we started just looking around to see what other people were doing. there are a number of global groups that exist to support groups for people with tos, so we connected with each of those. we started doing our own research to find out if there are any specialty clinics, and we discovered that there were a handful of specialists in the u.s.. then we started looking at those specialists, and several canadians have gone to see dr. donahue with positive results, especially for situations like sydney’s that are really complicated. we decided we would go for a consult just to see.
sydney and i went down to boston and met with him and that experience, i can’t even describe to you what it was like. it was just that moment of hope, and that was the part that was really hard for us — because at that point we hadn’t had any hope.
sydney had some special imaging there that was developed for people with tos. and then, in addition to that, she had some guided botox injections that were an assistive diagnostic tool. the side-effect was that she was able to have some relief from her pain for the first time from the botox injections. there is no magic bullet, but it was like, ok, these people know what they’re doing. they understand tos. they understand the complexity of it.
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how long did it take to get an appointment?
h: they took us quite quickly. we applied in september, and we were there in december. before then, it was four years of dealing with it [since her diagnosis]. and if we go back to her initial symptoms at age nine, we had been dealing with this mystery illness for six years.
s: and at a period of time when four years is a lot. when you’re 16 to 20, that’s a big chunk of your life.
h: she missed her high school experience altogether. it was just one surgery after another.
did the provincial health plan cover the costs of the surgery?
h: we did make an application to ohip but, unfortunately, our application was denied. once we realized that there was hope and we could be helped, we decided instead to reach out to our family and friends and community. we started a gofundme campaign, and, with the help of family and friends and strangers and all kinds of amazing people in our community and beyond, we were able to raise half of the funds to get both of sydney’s surgeries.
it’s just a community of support. it was really quite amazing. we were nervous about doing that because we were a private family.
what was recovery from the surgery like?
s: the first surgery was very difficult. i also had my pec minors removed as well, so it was a couple of surgeries in one. it took me about 18 months till i started to feel better at all. then, there were some complications with my second surgery, but after those were addressed, the recovery was much quicker. i was able to go to school in the fall and start riding again in the summer. within six months, i was getting back to the activities that i really wanted to do.
and what is life like for you now?
s: life is a lot different for me now. i’m going to school for pre-health and i’ve applied for nursing school this fall.
h: i keep telling her she’ll make the most incredible nurse. sydney doesn’t talk about this too much, but her dream was to always be a nurse, even before she got sick. once she got sick, i think she thought that dream had died, and here we are now, recovered enough to be able to revive that dream. and really, in many ways, she’s had a pretty interesting apprenticeship in terms of what the experience is for the patient.
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i think one of the things that’s important to me, is just for people not to give up hope. a lot of what i observed with sydney going through it, before we got to mass general brigham, was just a lot of judgment. she must be drug-seeking or she must be this or she must be that. through all of that, sydney navigated remarkable well.
for other parents whose kids are going through it, even if you’re told there are no other options, just keep looking and to keep seeking places like mass general, because they exist.
you have to advocate for yourself big-time. sydney’s a great advocate for herself, but sydney’s not trying hard enough is probably the thing i heard the most. i think that’s interesting, because when things aren’t working, it’s easy to blame the patient. it was really just believing in sydney, in her experience and listening to her that really got us through.
readers interested in learning more can check out the thoracic outlet syndrome program at mass general brigham or information from the university health network.
emma jones is a multimedia editor with healthing. you can reach her at emjones@postmedia.com or on instagram and twitter @jonesyjourn.
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