My Arteriovenous Malformation

An Arteriovenous Malformation - AVM for short - is a twisting of veins connecting to arteries in the body that can cause a stroke or stroke like effects and/or seizures when it happens, if the malformations are in the brain.

Never heard of it? I'm not surprised - neither had I til one surprised me at the age of 32.

This lens is an attempt to share my own experience, and to offer some information so that others can learn something about it. I also have information about seizures because a sudden appearance of seizures can be a symptom of an AVM or, as in my case, they can be the effects, part of the aftermath, of having an AVM.

..or that's what it felt like. I was 32, a thin and active mother of two. At the time, I worked in a bookstore. My life was less than calm. I also smoked a pack and a half of cigarettes a day.

While my 7 year old son slept, I was talking on the phone to a man I'd been dating. My 12 year old was with his father.

In the middle of our conversation, my friend started talking gibberish. "What?" I said. "What are you saying?" He mumbled something garbled again. "What, what what?" I said, but he just kept babbling nonsense.

And then my brain exploded -- it was a headache, it wasn't a headache -- it hurt like hell. My stomach churned. "I can't talk," I said, "I have to go." I hung up. It didn't matter, I thought, he wasn't making any sense.

For the next couple of hours I threw up over and over. When I wasn't emptying myself from the other end. My head pounded, I spun, I twirled. When I wasn't vomiting, I lay on the bathroom floor. I must have the flu, I thought.

When it finally stopped, I took a shower. I know I went to bed. That's all I remember. My mother had been away for a few days. When she came back she took one look at me and said, "You need to see a doctor."

I was a pasty grey and I guess I didn't look so good. But it was Sunday . I picked up the book I'd been reading but the words didn't make any sense.

On Monday, she took me to her internist.

We go to my mother's internist. She goes in while I sit in the waiting room. She talks to him for a moment, and then I'm called in.

I sway when I walk, my balance is off a little. At this point in my life, I'm not a heavy drinker. That's going to come later.

I sit down in the empty chair beside my mother. The doctor nods, my mother fixes her hair. The doctor asks a few questions, and though I swear I am answering them, it's my mother he listens to.

I'm 32 years old, twice-divorced mother of two boys, I don't drink, I smoke and I'm living with my mother because I can't afford to live on my own. I have no health insurance because I can't afford that either. My mother is an alcoholic, but we don't talk about that.

"She was on the phone with her boyfriend ", she said, giving me a look. She didn't like this guy. "They were having a fight, I think she was upset and had a headache and he made her sick,"

I stroke my head, which is still throbbing a bit. "No,we weren't having a fight, he was asking if I would..." but nobody is listening. Maybe my words make no sense.

"Hmmmm," the doctor nods and writes some things down. He hands me a book and asks me to read it. I hand it back. I'm lucky I can tell it's a book.

"I can't read," I tell him.

He nods again and smiles kindly. "Well," he says looking down at me over his glasses. "We'll go ahead and set up a CAT scan but ...." he writes something down on a prescription pad and hands it to my mother. "This is the name of a very good therapist. Give him a call, go see him. I think you'll find your headache will go away." He winks at my mother and they laugh conspiratorially.

and what did you do to get yours?

If you search Arteriovenous Malformation on the internet, you'll get a lot of information. Here's one source I've recently (2023) used: Brain Arteriovenous Malformations (a Canadian site), because it has more information about adults and is specific to malformations in the brain.

Approximately 1 in 100,000 people are estimated to have AVM according to the Rare Disease Database, though fewer will show symptoms. Brain bleeds are very rare, occuring in less than 1% of the population.

A short description -- normal arteries carry oxygen from your heart up into your brain, and veins take blood with less oxygen away from your brain and back to your heart.

Some of us have a bunch of tangled up blood vessels somewhere (not just in the head -- AVM's can be anywhere where there are blood vessels and veins).... that tangle can make the blood feed from the arteries to the veins instead.

And you have a mess going on.

My favorite fictional buddy who had an AVM was Nate Fisher from Six Feet Under... though I didn't like that he died of it... I did like that it got some coverage. Also, he was in love with a Quaker at one point (I'm a Quaker, so double points for Nate!)

U.S. Senator Tim Johnson had a stroke caused by an AVM on December 13, 2006 He went back to work the following September.

Dr. Jill Taylor -- who I think became famous because of her AVM, but that still counts for me! Dr. Jill Bolte Taylor is a Harvard-trained and published neuroanatomist who experienced a severe hemorrhage in the left hemisphere of her brain in 1996. Read more about her here

Mike Patterson, football star (former defensive tackle for the Eagles), diagnosed with a brain AVM in 2011.

..cause it ain't over yet!

When last we met, I was mis-diagnosed. The doctor thought I was having some kind of mental breakdown due to a non-existent argument with a guy I was dating, based on misinformation from my mother.

My CAT Scan was scheduled for a week from that Wednesday - no rush. (There were no MRI's back then).

I dutifully called the number he gave me but I didn't like something about the doctor - so I found another counselor in the Yellow Pages (a pastoral counselor, I had no idea that was affiliated with a church - in this case the United Church of Christ - I got a bleeding heart liberal counslor who turned out to the the best therapist ever - so even though this was a misdiagnosis, it led me somewhere great)

In between appointments, I was trying to work at the bookstore but having some problems. The store looked lopsided, as I walked down the aisles I felt like I was on a swaying ship - I'd be holding onto the bookshelves. And, of course, I couldn't read any of the book titles or run the register. I fell over once at work.

Once at home in the morning my legs suddenly stopped working - I was holding a cup of coffee and was standing one moment, the next I was on the floor. Hadn't passed out, it was as if the signal from brain to legs had been switched off.

When I showed up for my CAT scan, the technician was a cute young man and we flirted. Smiles and light conversation until he evidently took a look at what was on the screen - he rushed back into the room and eased me off the table like I was somebody's grandmother.

A flurry of visits to a neurologist and a neurosurgeon.

Inoperable, it just wasn't in a place that was good. And I didn't have any health insurance then. Today they have radiology treatment - but by now, I have a pre-existing condition.

None of my doctors ever told me to give up smoking. Evidently they didn't think it was related. But 6 months after my incident, I finally was able to give up smoking.

Drinking was another matter -- my life, not the AVM, threw me into a depression, and although I was in therapy, I was not doing well emotionally. This was the summer of my discontent. I drank quite a bit - mostly beer. After I got the traveling job, I phased down, rarely drinking. And when I had the seizure and went on anti-seizure medication (first Dilantin - allergic to it, then Tegretol - allergic to it, finally Phenobarbitol), I stopped drinking entirely.

In the years following my AVM, I had regular MRI check ups to see if the AVM was growing. At this point now (2023) I haven't had an MRI since 2008 or so.

My ability to read came back within a month -- it eased in slowly. I did find that I reversed words that in my mind were opposites -- fork and spoon, red and green. That got better and would only happen if I was tired. Now, of course, I can pass it off to old age!

When I was 42, I found out I was pregnant -- because of my age and the AVM, mine was considered a high risk pregnancy. But this was my easiest and most joyful pregnancy -- the delivery was short and easy, not a caesarian, though I'd been told to expect that. The baby was healthy.

or... my life reads like a soap opera sometimes

... So, the blown up brain happens in January. In February, I ask my soon-to-be-ex-husband to watch our 7 year old son while I have an angiogram (he's 500 miles away, he says no at first, then yes. Then he won't send him back).

By now, I'm in therapy -- thank God.

I move out of my mother's place. I find a job that pays more than I was getting in the bookstore. It's a traveling job. Driving a car from Maryland to North Carolina, calling on bookstores. Lots of driving.

I've never had a seizure, so there's nothing to stop me from driving driving driving. My new job is great, and it pays well. Except for the internal and external battles for my son, which is another story, life is fairly good.

In December we traveling sales people attend a company sales meeting. The morning I'm to fly back home I'm sitting in the lounge in the hotel with a few other sales people - laughter and conversation as we wait for our rides to the airport.

The discussion turns to talk about our religious line of customers and I'm thinking how unspiritual the conversation is when the conversation suddenly sounds like it's being fed through a hollow tube - the voices are getting further and further away. And I can't move or talk, though I know I want to say something.

My next memory is of myself lying on the floor - at some point I'd fallen. An ambulance is on the way. One of my fellow sales reps later gave me the notes he'd taken - he realized I'd had a generalized tonic seizure - I hadn't had the big one, a lot of people had only seen me fall down and hit the floor. He said nothing because he knew I could lose my job.

Off to the hospital - I had a nice fat black eye out of the deal, but otherwise they found nothing wrong with me. Back home. Back to a neurologist. I was put on phenobarbitol and stayed on it for years, even through another pregnancy, though my dose was cut way down.

All those years I traveled, I never had another seizure like that.

What I did have, that I didn't realize were still seizures, were simple partial seizures. I'd been having them often. I liked them, they felt good, a bit odd -- eerie-- they were auras. They are incredibly hard to describe.

and bring it with you to your doctor's visits... great gift for mom or grandma, too! This is the only way I can remember what I need to ask my doctor, and record what he or she said to me ... PLUS if you have to fill out medical history or write down all the medication you (or grandma) is taking -- this can save a lot of trouble!

You know, your doctor is a person - a busy person - yep, he or she knows a lot more about general medicine that you do. But you know a lot more about you than your doctor does. You're NOT a hypochondriac if you keep records!

What is it?

An aura can be many things for many different people. In many cases it's a warning that a bigger seizure is coming. Sometimes it comes a short time ahead of a grand mal seizure -- sometimes longer. For some people it is not a pleasant feeling. Most often you're frozen (the tunnel feeling I had in my first seizure was an aura). Some people can use it to stop the larger seizure.

For some, like me, the aura has been the seizure. I didn't lose consciousness, and it seemed to have a pleasant feeling with it. That's why I liked it, it was almost like getting high, without the drugs.

It might start with some feeling or sound of music or a picture of something would flow at me ..that's the only way I can describe it...it wasn't something you could clearly see, it was something you could sense, feel - - here it comes. And then there would be a series, a pattern of images, thoughts, sounds and I would know it was upon me, along with a very warm physical feeling and a spacy absence.

It might last a few seconds or a minute or two - I never timed it. I could be driving or sitting at home - there didn't seem to be any 'triggers', though sometimes I had the feeling I was the one who was bringing them on by thinking of a song or saying. That may be part of the 'hallucinatory' effect these auras had for me.

They were pleasant, they were friendly, I never wished they'd go away, I liked them.

Over the years they seemed to happen less and less.

By 2000, I became concerned about the long term effects of phenobarbitol and asked my general doctor if I could phase them out.

Over a few months, we eased me off them and I become drug free and I was very happy!

The aura's didn't seem to come back - not until 2006 when I noticed I was feeling "light-headed" after working out. (Read = aura, as all the symptoms were there).

I ignored all that, just vowed to get more rest, not over stress myself and ease up on the exercise.

But that didn't work so well - in February of 2007, alone in my office which then was separate from my home, I had a very strange seizure. It was not your classic grand mal seizure, it was a kind of the aura seizure, but it was an aura seizure from hell.

It wasn't filled with pleasant feelings entirely - there were also some very unpleasant sensations, along with constant vomiting and other bad bodily functions. I didn't lose control or consciousness that I know of, though I lay down exhausted and slept for a couple of hours - and woke to find that I'd bitten my tongue, badly.

OK - so, yes, I very probably did have a seizure in there.

Scared me badly - I got myself to an neurologist/epilepsy doctor - who ran an MRI on me, just to make sure everything was OK. That was at my request, because I was supposed to be having MRI's every other year or so but since I no longer have insurance, I can't afford it (at 1,000 - 2,000 a pop).

My epilepsy doc was great - I take my meds now and don't think those auras are so swell! Somewhere in there, neurologists were changed. The new guy seemed to think I might be overreacting, but kept me on the meds. He was himself a nice and pleasant guy.

I'm thankful for all that. But I always have my will and life insurance ready because I'm aware of how suddenly things could change.

In some ways, I still live a good portion of my days in denial -- if I remained aware all the time, I think I'd go mad. Or I would go nowhere at all. Every so often, my own mortality strikes me and almost takes my breath away. But that happens to all of us, probably more so the older we get. This is it. Even if you believe in reincarnation -- for this existence, this is it. Make the most of it, I remind myself.. and then of course, I forget and have to remind myself again!

It would be helpful if I had health insurance, but because of my pre-existing condition (the AVM and now epilepsy), insurance companies don't like me -- I can get health insurance, of course, I just can't afford it.

Every day is better if I remember how short life is, how human we all are and how anyone of us could go at any moment. Best we treat each other kindly and remember to say I love you!

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Feb - Mar 2023

It seems to be happening again, two auras one first week in Feb, the second this week - about a month apart. Not sure if it's lack of sleep, forgetting to take one capsule. Or something else. I haven't had a neurologist visit longer than 20 minutes since probably 2011, when one left and a new one started. The "new" one left last year and a Physician Assistant has filled the order. I don't think he knows my history - last June he recommended I stop taking the medication, but I declined. I did not contact the PA when this happened, but notified my GP since I have an appt with her end of month.

She has ordered an MRI for me -- it could be a new bleed that hasn't shown, or something. Also looking for a new neurologist/PA for me. I need to see how much of my ancient history is available to these people. Is it lost? That's entirely possible.

These are some really good links on this topic