Aneurysms, Embolisms…and AVMs?

   A few days before Thanksgiving when I was about 21, I shared an apartment with mom. We worked 3 jobs between us to cover bills. We had very few furnishings but it was enough.  We used my cell like a house phone and her little Corolla from the 90s kept us going back and forth to our jobs.  It was difficult but we were cozy in that little moldy apartment.  One night in November (2004?) my cell rang.  I looked at the I.D and saw Violet’s name.  I began to shake and threw the phone on the table.

Me:

Mom, it’s Violet, I can’t answer it.

Mom, also nervous:

 I can’t pick it up.  Let it go to voicemail.

   There was no reason for either of us to be so frightened of her that we would vehemently refuse to answer. Mom and Violet had finally reached a point in their relationship where they had experiences to bond them rather than age to separate them; and yet, there we both were, staring at my glowing, ringing phone on the table with my aunt on the other end waiting…waiting.

   The next night mom and I were in my room. I had my shadeless lamp on the floor between us, mom sat on my frameless mattress/bed, and I rolled a joint as we talked about what to do about Stilla.  My sister was the reason we moved into an apartment together in the first place and now she was looking for a place to live with her two boys and baby on the way.  The phone rang and we exchanged frightened glances.  The voicemail we never checked was now floating in the air between us over the exposed bulb of my lamp.

Mom:

No.

Me

It’s grandma.

   Mom is the black sheep of their household. I am the black sheep of mine. Kasper is the black sheep of his.  We don’t fit in.  We fit in so awkwardly that when a family member calls us instead of us calling them, we instinctively know something is wrong. Reluctantly, mom answered the phone. I heard grandma’s stiff voice drift over the hot bulb to my anxiously awaiting ears.  It was the one word I never heard grandma say: my mother’s full name.  Mom broke down.

     I held mom as she cried over the death of her sister for an hour.  She was completely devastated.  I think it had to do with the fact they were finally talking like sisters after almost 5 decades of fighting, bitterness and jealousy from both sides.  Violet was…a special kind of woman.  She stole her youngest son’s college fund–one he created when he learned he was the black sheep of their household and would not receive help once he was no longer aa legal obligation.  She used the money he saved bagging groceries and organizing fruit and veggies to pay off a chunk of her massive credit card debt.  That’s just one example of her shining, winning personality.  Being a new grandparent, however, had begun to humble her and mom appreciated this.

    It took mom weeks to finally ask to listen to the voicemail.  I played it once to make sure she left one; she wanted to talk to mom, wish her a happy Thanksgiving and then hoped to catch up soon.  I hit replay and put it on speaker.  Mom would never get to hear that message.  I’m the only one who heard Violet’s last words to her sister.  All  mom heard was static and random syllables she couldn’t make out.

How It Happened

   Violet was prone to migraines.  She created a  cocktail of OTC meds to treat them and it worked for decades.   When she went to bed early one night in November many years ago, it surprised no one.  Her husband, who had his own room for some time already, didn’t think to check on her before making way to bed.  In the morning, noticing she had yet to wake, he checked to make sure she was okay.  She was not okay.  She was so very not okay the details are horrifying.

   Violet died how we all fear to die: alone and in pain.  Violet’s body was found in a way we hope to never be found.  Her death pose, from what has been told, was one for Halloween props in haunted houses. With her mouth open, her eyes bulging from their sockets and blood drying on her cheeks, Violet died from a massive cerebral rupture.  The pressure was so grand it forced her eyes forward, causing blood to leak from behind them.  The rupture was so massive it was nearly impossible to find a definitive cause of death. Aneurysm was written on a chart somewhere and that’s what we all accepted.

   Aneurysm-3pic

   An aneurysm is, to keep it simple, a bubble that forms in your arteries. There are various types, they form in various places and they don’t all develop for the same reason or cause.  There’s many factors from genetics to diet to behavior so it’s impossible to predict everyone potentially at risk. Be a healthy person in general and you’re probably fine since most aneurysms aren’t exactly life threatening.  But because some aneurysms rupture like geysers and factoring in the amount of “mess” made out of Violet’s brain, it’s only natural to assume an aneurysm was the culprit.

   It turns out, after examining Violet’s medical history (migraines) and considering her self prescribed treatment, it’s possible she passed from an embolism. But this can mean many things.  Tossing out embolism in general is like diagnosing cerebral palsy because a kid is left handed at the age of one (what they said about JJ). Again, to keep it simple, an embolism is basically a blood clot (or some other debris) that lodges in an artery, creating a blockage and leading to either a rupture or cutoff of blood and oxygen to a vital organ such as the lung or brain. The meds Violet took are known to create holes in the heart if taken in excess; this is like ibuprofen causing liver damage if taken above recommended dosage, and without water to keep the kidneys and liver filtering properly.  It’s possible a clot passed through a hole in her heart and to her brain, known as a paradoxical embolism.  I have no idea if this is just random theory or if an autopsy found a hole in her heart, leading to this theory.  I don’t think she had an autopsy though, I’m not sure.


More Than An Aneurysm

     As I lay on a table, completely exposed to strangers running circles around me before my first scans, I was asked if aneurysms occurred in my family.  I told them of Violet in no great detail. This was accepted as the most likely cause of my stroke.

   Later that first night, I saw my neurosurgeon for the first time, Dr. Burgundy.  He’s a nice older man with a comforting voice and touch. He asked if I knew what happened; all I knew was I had a stroke.  He asked me to move my left side which I could not.  He talked about what happened to my face and was confident that it wouldn’t stay that way.  He reassured me by explaining his medical background.  He’s very well known  regionally– not because he’s super awesome and spectacular when it comes to digging around inside other people’s skulls but because his field of expertise and range of patients is exceptionally wide. He’s a neurologist and a neurosurgeon.  He’s an emergency neurosurgeon and a pediatric neurosurgeon.  He’s a pediatric neurosurgeon and….wait for it….a fucking veterinary neurosurgeon. I didn’t want to leave his hands.

   So I had a stroke.  Okay doc, great, but what is a stroke? A stroke is when, again, keeping it simple, an area of the brain is unable to receive blood.  Blood feeds the brain oxygen, without it, parts of that deprived area begin to die one cell, one neuron at a time.  It can be devastating in minutes.  Only recently has science begun to understand treatments are available to reduce risks, damage and even prevent stroke.  There are many names for stroke (CVA: cerebrovascular accident, brain attack, for example) and there are 3 types of stroke (ischemic, hemorrhagic, and transient ischemic).

   What causes stroke?  Holy shit you will get two types of answers when you ask a doctor this:

*shrugs* it could be any number of things

or

Blah, blah, blah, big words, blood pressure, age.  Blah, blah, bigger words, I’ll just keep talking until you finally realize you’re too stupid or stressed to understand me.

   Both of these are actually on point.  All that really matters is what caused my stroke though, right? Dr. Burgundy explained they thought I had a ruptured aneurysm because of Violet, my age, and the pregnancy.  Within the last 10 years, the number of strokes in younger adults has increased at a surprisingly alarming rate (check this) and no one knows why other than obesity rates have pretty much matched or surpassed that rate.

   Dr. Burgundy asked about my migraines, did I have any?  No, just headaches. He looked confused and touched the right side of my head and I reacted with such intensity that he pulled his hand away.  I said that’s where my headaches always are. I then pointed to a more precise location and he said something like:

What you have is an arteriovenous malformation, an AVM.  This morning it ruptured and bled into your brain, causing a massive stroke.  Right now there is a puddle forming in your basal ganglia.  We are hoping to go into your brain in the morning and remove it before you have another rupture.

   So that’s a lot of information. What the fuck is an AVM?  And what do you mean I had a stroke?  Like a real stroke?  Like the kind for old people? And what do you mean brain surgery?  Like actual brain surgery?

   Even now, I think brain surgery sounds like a fake event that doesn’t happen to real people.  Fucking brain surgery, eh? Brain surgery…la-dee-da

   I feel like that entire day was about me waking up various times and learning something terrifying each time.  I didn’t take any of it seriously.  How could I?  I should have been drowning in fear, I should have been bawling my eyes out and screaming for someone with a habit or a collar to hear me give confession.  I should have been asking about the baby in my belly.  Was it still there? But how could I? I wasn’t even allowed to sit up to take in my surroundings.  I saw everyone from the chin first and then it was nose hair and eyebrow.  How do you take that seriously?

    As slow as a day goes, things happen fast when you’re in a state of shock that’s so severe people can’t tell you didn’t already know everything that was happening and going to happen.  I asked questions as if my brain functioned perfectly normal.  Had I ever heard of an arteriovenous malformation?  HAVE YOU?

   Apparently, for no reason anyone can figure, arteries in our bodies like to tangle up into little knots.  Okay, that’s not true buts it’s a simple way to think of it and that’s how they will first be explained to you.  In fact, most of everything you will come to know about AVMs will be found via Google because doctors only seem capable of being vague.

  My brain had a knot in it and after Dr. Burgundy left me with what information he could I felt like…  I realized how much I ignored my instincts throughout my entire life that night.  I knew this would happen to me.  As I lay in that hospital bed, looking up at a dark ceiling, unable to move, I saw the first pieces of a very big puzzle gathering before my eyes.  I don’t think poorly of my ignorance, how was I to know? Most signs of anything are found in retrospect.

   I tried to imagine what a knot in one’s brain might look like and I had no idea.  When I was a young teen I had an experience.  It’s possible it was a sort of seizure but what it was, was a hallucination (complete story, here).  I was stoned and sitting with my family when I suddenly had a vision, and thought I…saw my brain.  It’s stupid, I know, I’m not dumb; but it happened.  There were witnesses.  I really felt and thought I saw my brain and I never forgot the vision I had.  It stayed with me throughout the years.  Every time the story was brought out from the Chest of Mortification to show friends and boyfriends, that vision was refreshed in my memory. This vision came to me, one of a tangle of red and blue wires, the one described similarly by Dr. Burgundy.  The difference is I still imagined wires sitting cozily in a hollow space of my brain as if those existed.

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Photo Credit

 So that’s an AVM, arteriovenous malformation.  I think of it like this, though it may not be accurate[?]: your brain has a street map of veins, vessels, arteries, whatever you want to call them; your vascular transit system. Like every city, you have big, high volume traffic roads and you have smaller, more moderately paced roads.  Sometimes, traffic needs to get from a high flow artery to a low flow artery.  And like traffic with actual vehicles, you can’t just run high speed off one road onto another going much slower due to it’s narrower design. In the real world we have access and exit points that ease and merge traffic together peacefully.  In our vascular system these are called capillaries.  When there’s an AVM, there’s no capillaries so you have two high speed rates of traffic merging at once.  Eventually, the constant colliding of traffic weakens the arterial walls until they rupture.  This is why the risk of rupture by the age of 20 is almost 50% and increases up to 5% each year. They say if you reach your midpoint in life without rupture, you likely have a low risk AVM and will die from some other horrible cause, natural or otherwise.

   It has taken me 5 years to learn and understand what I now know about stroke, AVMs and the recovery process.  As if I knew the impending hardships ahead, I did not rush to accept what has happened and what lie ahead.  I accepted the shock warmly and I let it wrap me up to keep me nice and safe.  I couldn’t wait until morning so I could have my surgery and carry out the rest of my pregnancy at home.  That is how I have always survived everything, just let it happen so I can start to get over it and I really wanted to do that with this stroke, AVM, and surgery business.  I didn’t want to deal with it and who would?  Things are so much better when you can look back and think,

I’m so glad that’s over

and start moving forward.  Naturally, that didn’t happen to me because when karma bites, the bitch wants to make sure you acknowledge her with a good long howl of pain and fear.

   I didn’t get to tell Kasper I was having surgery that next morning.  If I did, it was a short lived tale. There were paths ahead that I would need to choose from and I found that out early as I looked up Dr. Burgundy’s nose and listened to him tell me about his colleague that’s much more attuned to the needs of a patient such as me.


You can find the beginning of this experience here

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