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rare diseases

what it feels like: 'i had to work through' paralysis from arteriovenous malformations

fifteen years after rhian jansen was diagnosed with arteriovenous malformations in her brain, she suffered a brain bleed that left her paralyzed.

by karen hawthorne

published jul 13, 2023

last updated dec 18, 2023

11 minute read

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11 minute read

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a brain bleed is a common first symptom of an avm

rhian jansen plans to create a free workbook for people with brain injuries. supplied

arteriovenous malformations (avms) are tangles of blood vessels — like a bird’s nest — that cause abnormal connections between your arteries and veins. most avms happen in your brain and spinal cord, but they can occur anywhere in your body. they are tricky. while some people have symptoms, others only experience symptoms after a significant event like a rupture and bleed. basically, the force of blood flow from your arteries brings pressure to the avm, according to the cleveland clinic. veins have weak walls and can’t always handle the blood pressure, so the avm bursts and bleeds as a result, which can cause stroke and brain damage.

avms are rare, estimated at one in 100,000 people who are born with it for unknown reasons, and are mainly detected in people age 20 to 40. about 50 per cent of people with a brain avm have a brain bleed as their initial symptom.

rhian jansen, 37, an artist and former esthetics centre manager in kingston, ont., talked with healthing about how she ended up in the emergency room, what it was like to wake up from surgery paralyzed and what she has learned on her way to mobility.

this interview has been edited for length and clarity.

what led to your diagnosis?

i found out about it completely by fluke about 15 years ago. i was having an mri done for this ringing in my ears, which turned out to be nothing, but it went away as soon as i was off the birth control medication i was taking. so they found this avm and my family doctor referred me to a neurologist in kingston. i was in my early 20s and he basically said that i was born with it and most people go their whole lives without even knowing they have it unless it starts to cause issues. he also said that the air pressure from flying could cause it to erupt. but i was born in a different continent in papua new guinea, and i had travelled halfway across the world to canada.

one of the warning signs, he said, would be really intense headaches or a migraine that wouldn’t go away and if the avm erupted, it would be like a stroke. but there was no followup afterward. he said, ‘you’re young, you’re healthy, just go about living your life.’ so that’s what i did.

you didn’t feel concerned or worried that maybe it might cause you problems later?

i really didn’t worry about it at the time. i was in my early 20s and i had all these plans and dreams to travel. and it’s not like he said, ‘you can’t fly’ or ‘you need special accommodations when you fly’ so i just didn’t worry about it. he had also said if i wanted to have kids, i should consult a neurologist. but that was never an issue because i don’t have kids and i never wanted to. so the avm never crossed my mind, unless i was going to a doctor’s appointment.

and after 15 years, i honestly forgot that i had it. in january 2021, kingston, where i live, had was in its second covid lockdown, so i wasn’t working. up until that point, i was working a lot and felt exhausted. i was actually looking forward to the lockdown because i was working 40 hours each week as a spa manager, plus i had a candle business on the side that i spent 15 to 20 hours each week on.

i had just got groceries and i was sitting in my car and i felt this sensation on my left side that started in my neck, down my arm and my upper body. i called them episodes, so it was like twitching and spasms, and then everything went numb. i felt really dizzy. i was kind of freaking out. and by the time i started to process what was happening, it was over. it lasted all of 45 seconds.

i have low blood sugar, so i thought maybe that was it and i had an energy bar. i walked around the parking lot and felt fine so i drove home, unloaded the groceries, took my dog for a walk, and then an hour later it happened again. then, i was making dinner and it happened again and again, each time more intense. i called telehealth and the nurse asked me all kinds of questions and then told me to the hospital immediately. i called a friend who took me to the emergency department. because of covid, no one was allowed to go in with me. it was terrible.

i explained to the staff what was happening and as i was waiting, i probably had another 15 of these episodes. i was dizzy and my vision was starting to get blurry, and my first thought was, ‘is this a stroke?’

it must have been terrifying.

i was starting to freak out. i guess my fear was that i was going to pass out or something terrible was going to happen and it would be too late. i didn’t think i was going to die, but that something bad would happen.

when i got into an examining room, i told the doctor about the avm and i was sent for an mri, but there was no one who could read my scans. there were also no beds available, so at the 10-hour mark, i told them to admit me or send me home. they said that i should go home, take it easy, and don’t do any heavy lifting. their unofficial diagnosis was that i had vertigo.

three days later, i got a call from the doctor that was in the emergency department and he wanted me to go back for a ct scan. i did, but they still weren’t certain what was going on with me. a week later, i began to get intense, non-stop headaches, ranging from a three to a 12 out of 10 in terms of pain. i took ibuprofen, advil, but nothing made it better.

how long did it take you to get answers as to what was causing your symptoms?

i went back to the er for a third time after the headaches started and i had another ct scan. i finally saw a neurologist who said that the episodes i had the first time i went to the er were seizures. she was able to pinpoint that the seizures were related to the brain bleed and the brain bleed was from the avm. she also said that the headaches were a clear sign that something worse was likely on the way. she referred me to a neurosurgeon, saying that there were likely three different treatment options: do nothing and monitor it, radiation or surgery.

the neurosurgeon called me a couple days later and said we definitely need to do something, but that the avm was too big for radiation, so my only option was surgery. because of the pandemic, they were only doing essential surgeries, but he gave me a date two months later in march.

i spent the time waiting for surgery planning out my life, tying up loose ends, cleaning my apartment and making sure all my laundry was done. any information i was given was over the phone by my neurosurgeon or his secretary, which i frantically wrote down. i live by myself, so there wasn’t anyone around to hear it or fill in the gaps. he went over the potential side effects, like a five per cent chance of permanent paralysis and a 15 per cent chance of temporary paralysis. the chances were so low, i figured that i was going into it trying to be positive since there was an 85 per cent chance that nothing was going to happen.

and?

i was so groggy when i first came to, i don’t even remember thinking about whether or not i was paralyzed. they took the breathing tube out of my throat, and it was so painful — that’s all i could focus on. i found out that the doctors were able to remove the avm, so that was good.

but then my surgeon came to see me and he was on my left side, saying, ‘ok, squeeze my hand.’ i tried to squeeze it and nothing happened. then he went down to my toes and asked me to wiggle my toes, but i couldn’t do anything. i think he felt a flicker in my hand, and he said my hand and arm will come back but he wasn’t sure about my leg. i had left-side body paralysis. i spent two weeks at kingston general hospital then five weeks at providence care hospital for rehabilitation.

physiotherapy must have been gruelling.

it was hard in the sense that the exercises were difficult and learning how to move my body again was hard. it was all so raw. when you first get to the rehab centre, you are evaluated and given an approximate discharge date. mine was supposed to be eight weeks, but it was cut short because of covid. my goal was to get through week one, week two, then week three — i kept looking forward. i was there for five weeks.

everyone was fantastic, but i was on the stroke wing and most patients were in their seventies and eighties, so i always felt like i was being compared to an elderly person. there was no socializing. and at that point, just my parents were allowed to visit — they would come every day. but in the evenings, sometimes i would sit in the sunroom by myself. that isolation was really hard.

did you worry that you might never get your mobility back?

no, i didn’t let myself think it. i never accepted that [the paralysis] was going to be permanent. in my mind, it was just something that i had to work through.

my hand and my upper body did end up coming back relatively quickly and within two weeks i could raise my arm as far as my shoulder.

apart from the mobility issues, the part of my brain that was affected also controls behaviour and emotions. my emotions were like a roller-coaster and i would react sharply to things — my highs were high and my lows were low. so it wasn’t that i overreacting, it was literally because the chemicals in my brain have been altered.

have you been able to regain more mobility?

now it’s just my left foot that’s paralyzed, but i’m hopeful that i’ll regain full mobility. it’s just a very slow process. i was in a wheelchair the entire time i was in the hospital. when i was discharged, i had a leg brace made, and i left with a walker and a cane. i used the walker in the house and used the cane for a full year. now i only use the cane for long walks or if i know i’ll have a long day. i also go to physiotherapy once a month and, realistically, i will need it for many years. physical activity in general is still where i feel the most frustrated because my mind wants me to do all these awesome things, but then my body isn’t there yet. it’s really hard learning what your limits are.

what things have been critical for your recovery?

i’ve networked with a lot of people and joined support groups. i have my family, and my friends — they’ve all been incredible.

i have also tried all kinds of medication to help with pain, sleep and spasms, but my body just does not respond well to medication. there are always side effects, like ringing in the ears, itchy eyes, depression or anxiety. i started researching homeopathic approaches, and that was a game-changer. through holistic therapies, i’m now off of all medications by choice. i also use cbd for pain, sleep and brain fog. other things like acupuncture, reiki, meditation and yoga, and cranial osteopathy also have provided pain relief, reduced stress and anxiety, and allowed me to take control of my health.

has your experience prompted you to make any changes in your life?

i lived by myself in a one-bedroom basement apartment, it was dark and had steps going down. my parents are getting older and they’ve thrown the idea around for a couple years that we should buy a house together, so we did. it has a completely separate suite for me.”

as for my career, i dove back into my candle-making, but it’s so competitive — there are so many people doing it. but i really like the idea of teaching, and i used to teach candle-making workshops, so i may continue with that for a bit. i have lots of other ideas on what i should do next, including a free workbook for people with brain injuries, distributed to people in hospitals and rehab facilities. i want it to have pages for colouring, and infographics that educate people on how to conserve energy and how to cope with a brain injury, but also with dedicated spaces for journaling, recording how you’re feeling, and a calendar to write tangible goals. most importantly, there’s going to be a huge section of resources.

i also see myself working with patients with art whether it’s going into hospitals or doing online tutorials. art is healing and so absent from our health-care system.

any advice for others who may be going through a similar experience?

i am passionate about sharing my story with the people who follow me on social media so their experiences are more positive. i want to tell people that no matter what they are feeling — whether it’s positive or negative — their emotions are valid and they are doing the best they can. also, be gentle with yourself, know you’re not alone and that, although being a self-advocate is incredibly hard and time-consuming, it’s critical.

rhian can be reached on instagram @rhidefining_recovery.

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karen hawthorne

karen hawthorne worked for six years as a digital editor for the national post, contributing articles on health, business, culture and travel for affiliated newspapers across canada. she now writes from her home office in toronto and takes breaks to bounce with her son on the backyard trampoline and walk bingo, her bull terrier.

what it feels like: 'i had to work through' paralysis from arteriovenous malformations