Many people don't realize how broad a category 'traumatic brain injury' is. When many people hear the phrase, they imagine that it basically just includes physical injuries resulting from bike accidents or car crashes. But in addition to these types of accidents, TBI also includes strokes, which make up almost half of all TBIs. [1] Since most people understand that strokes are fairly common, realizing that strokes are a subset of TBIs allows them to better understand how common TBIs are.
My wife (age 35), had a stroke last year, caused by a ICAD (one of her two carotid arteries dissected -- tore -- leading to a loss of blood flow). Hers was 100% occluded. Although some ICADs are traumatic, e.g. from car crashes or bungee jumping or chiropractors, many are not. If you can't point to an obvious moment of knowing when you had one, and if you don't test positive for Ehlers-Danlos or other connective tissue problems, they just shrug and deem it idiopathic/spontaneous.
She has what the doctors say are "excellent collaterals", meaning her other blood supply routes were great, and it took less than 90 minutes from stroke to teatment. It was a wake-up stroke and it took maybe 10 minutes for us to call emergency. tPA (side note: tPA is a miracle drug; it clears your system in maybe 2-3 minutes, I'm talking about my wife going from near-death and in full stroke presentation to being alert and having a normal conversation in literally 2 minutes), thrombectomy, immediate management of blood pressure. No further episodes after the beginning of treatment being administered. Discharged after only 7 days in hospital. MRIs show 3 or 4 small dots of infarct. The neurologist characterized the dots as being unconcerning, and further noted that if she was 55 or 60, they'd expect that level of damage to have accumulated just from living. Post-discharge treatment was just blood thinners for 6 months, at the 3 month update doctor said they could easily take her off; she's banned from rollercoasters and olympic weightlifting for life and we need to talk to an obstetrician to figure out if they'll recommend a c-section for any future pregnancies. 3 month followup MRI indicates her carotid never re-opened and never will, so now she's just living with one fewer major redundancy.
TBIs are weird. My wife returned to work after about 3 weeks. I would say her work performance was unaffected. On the other hand, she had sudden and overwhelming bouts of tiredness that seemed to come on with no warning. She'd go walk 5k no problem, but then other times she'd get so exhausted from making lunch she'd have to sleep the entire day. She had a lot of random head pains. Not headaches, but weird and unknown pains in her head. The doctors say both of these things are common post-stroke symptoms and they've improved a bunch over the last six months and will likely subside. She had a work-related OT visit 4 months after stroke that showed normal cognitive function except that she got a bout of extreme tiredness half-way through the day. She's mostly coped by WFH and taking breaks or naps during the day and working extended hours to catch up.
Why should random small infarcts cause this? It's unclear. We tend to have a picture of neuroanatomy that is functionalist, with particular parts of the brain serving particular functions, and so it would seem like small dots of damage should either do nothing or else impact diffuse things weirdly, not cause big systemic problems like this.
The other component is pretty severe PTSD. She's in stroke support groups for young stroke survivors (read: 60 year olds...). She has survivor's guilt when she meets people who had it worse than her. She gets upset when stuff in the news is about people who had strokes. There's been a few times where it's felt like she didn't realize she had a near-death experience, and so when I have had to talk about my own feelings with family members or friends, I think it's been jarring for her to hear how much danger she seemed in from the outside. I can't rule out that some of the big feelings are also a result of the neuroanatomical insult, but most of it seems just processing everything.
I guess the final thing is that it seems to me like she's more forgetful. More lights left on, more stuff left out, more "what did I come to this room to do?". Could this be the symptom of a TBI? Unclear if this is a real pattern or just my hyper-vigilance, and if real if it's actually caused by the stroke or something else.
For anyone else reading: Stroke morbidity and mortality is tied ENTIRELY to the speed of response. Balance, Eye Gaze, Facial Droop, Arm Weakness, Speech. If you see a symptom that might be a stroke, call emergency services immediately. Waiting an hour will compound damage significantly, and waiting 4 closes off most avenues of treatment.
Thank you for taking the time to write this out. My partner had a haemorrhage a number of years back, and has many of the symptoms you explain. The extreme tiredness doesn’t come on in the middle of the day, however at night it comes on very suddenly, as if a switch has been flicked. If you don’t mind me asking, how has your wife been with flying? My partner wasn’t fond of flying before, and we were advised to not fly for a number of years after.
She's flown twice since. The first time there was some odd pressure on the way back that freaked her out, the second time no issues. We're fairly frequent flyers. Docs did not recommend against flying. For stroke the general recommendation is that "weird feelings" aren't an underlying indication of anything -- "strokes only take away, not add" (hence why all the actual indicators of an acute stroke are things not working, rather than weird feelings) so to not panic. I would presume if my wife's stroke was caused by an underlying pathology throwing off clots rather than a dissection they would probably recommended compression gear for flying, but it wasn't and they didn't. But I could imagine that given the odd things going on with pressure and air and sitting still, there's a lot of factors that could contraindicate flying with a past TBI.
Yep. Suffered a mini stroke (TIA) a couple times a year since high school.
Then it moved to multiple per week.
Imagine 2+2 becoming a difficult concept for a week, then you're doing recursive algorithms with the best of them.
Had one while I was white boarding. I understood the what I was explaining but I was writing pure gibberish.
Another while in a violin lesson. Instructor said play these 3 notes. I play a bunch of completely random ones. He's like umm, no, let me show you again. I play a new set of random notes. Repeat about 10 times. Finally he's like "is there something wrong with your head?"
Factor 5 Leiden (genetic high clotting) is about 5% of population. So not that low of odds. Took doctors 3 years to figure out I had this. I'm still fighting to get my kids tested.
I belong to some young stroke survivor groups.
The range of disability is amazing.
From full recovery in a few days after an event to never.
1: https://www.cdc.gov/stroke/facts.htm