I would love to say that the second I was insured, treatment resumed posthaste. This was not the case. During my time out of treatment, doctors had come and gone, and so I had to be acquainted with my brand new surgical team. We also had to face the fact that my AVM had experienced considerable growth since my last scan.

This meant I had to go back in the magnet tube, I had to have CTs, I have to have angiograms. My new surgeon had a new treatment option: Onyx.

Let’s chat for a minute about Onyx. You’re either going to think of the Pokemon or the literal rock, and it is neither of these things. Onyx is the name of an embolic agent that is relatively new to the world of treating AVMs. It’s a copolymer of Ethylene Vinyl Alcohol (basically if alcohol was solid) and Dimethyl Sulfoxide. I’m going to operate under the assumption that you don’t know what these words mean. I barely know what these words mean. Let’s take a step back.

I’m going to safely assume that you’ve come into contact with rubbing alcohol. I’m also going to assume that you’ve had it applied to a wound or maybe gotten it too near to your eyeballs. You know where I’m going here. It burns. It’s not friendly with fleshy bits. This will become important.

My fourth embolization happened on April 3 of 2013. My surgeon prescribed me a particularly hefty dose of steroids because he had been particularly aggressive toward my AVM. That was all fine and good. I arrived home, prescriptions filled, took my recommended dose of pain medication and steroids and curled up in bed to watch Avatar: The Last Airbender until sleep would take me.

Sleep did not take me. The ER took me.

I was in pain that Just Would Not Stop. I arrived at the ER in disheveled My Little Pony pajamas, I was given an ice pack and a dose of IV Fentanyl and things are fuzzy after that but I think a CT scan happened? All that I really remember is stumbling my way to the bathroom to pee in a cup because I was told if I couldn’t give a urine sample they’d have to cath me. Nothing is going up my urethra while I’m the slightest bit lucid, no sir.

So, what had gone wrong was the pharmacist who filled my prescriptions had taken a look at the prescribed steroids and decided that it was way too much and, without consulting me or the doctor, decided to cut my dose.

A quick refresher on why they give me steroids: veins swell in my head and hoo boy does it hurt! It hurts so bad I go to the ER! It hurts so bad that all I can think about is how much I’d rather be six feet down in a cozy pine box!

So, once we got the steroid situation sorted out, things were much better! We’ll end on a high note this time, because things sure do get weird in the upcoming entries.

The idea that Just Anybody can apply for disability and then coast along through life without anything actually wrong with them is absurd. There may be the occasional outlier, but for the most part, the hoops that one must jump through in order to even be CONSIDERED for disability are ridiculous.

My initial application was rejected out of hand. Fine. I’m told that happens, to weed out the would-be fakers. Apply again. Show them you’re serious. I apply a second time. I get rejected a second time. I become very discouraged. This process is taking a long time, my AVM is noticeably growing. I am considering charging it rent for the amount of space it is appropriating.

By the time of my second rejection I was having daily bleeds. Bad bleeds. I recall a specific incident where I sneezed and began bleeding with force reminiscent of brand new high-water-pressure plumbing. I was instantly dizzy. I genuinely thought it was the end, and I sat there bleeding all over myself and wondering, what do I do? Call 911? Should I make a Facebook post?

Obviously the bleeding did stop and all I could think about was how ridiculous it was that I was in that situation at all, laying on my bedroom floor thinking that I had just nearly died via epistaxis. I remember thinking about how Attila the Hun died of a nosebleed, he drowned in his own blood on his wedding night. Fun facts!

I decided to go through with the appeal process. I was advised to get a lawyer for this, but decided not to, due wholly to my anxiety and inability to communicate effectively over the phone.

I collected testimony from doctors and nurses who knew me and my case. I collected CDs of scans, printed out information about AVMs and the near-inevitable fatality of untreated extremity AVMs.

Then I went to court.

This was one of the harder days of my life. I was a mess of anxiety and nerves, everything seemed to hinge on that meeting. I needed to convince the judge that I deserved medical care. That I deserved a chance to get better. That I was in near-constant unmanaged pain and I was not capable of getting and maintaining a job.

I had, at some point – I think when I was 18 – taken some sort of IQ/cognitive function test with a psychiatrist who spent a grand total of 30 minutes with me asking me seemingly random ‘stuff you learn in high school’ questions. He told the judge that I ranked having below-average intelligence, and I remember being so angry. How could he claim that about me, when he’d only spent 30 minutes with me, in a stressful situation?

Already feeling lower than low, I had to state my case. I answered the judge’s questions, gave her the letters written from my doctors and nurses, explained my illness. I remember saying that I have terrible nosebleeds and she asked me if I had proof. I was baffled. No, I had not thought to take pictures while trying to stop my face from bleeding.

I went home. I made myself dinner. I spilled my dinner. I cried a lot.

A month later, I received a packet in the mail stating that I’d been approved for disability and my insurance was effective immediately. I cried again.

My second embolization was scheduled for April 7, 2011 and my tentative resection was scheduled for just days after. This, however, turned out to not go according to plan. My doctor realized there was more to embolize and he didn’t want to do it all in one go, so we’d schedule a third. This one, he said, would carry more risks.

I was told that there was a ten percent chance that I’d lose vision in the effected eye. I might have some neurological side effects. I took a little while to weigh the pros and cons before finally agreeing, and we scheduled it.

And then we rescheduled it, because I realized the initial date overlapped with the premier of Harry Potter and the Deathly Hallows, part two, which I could not miss. It was important. My family wasn’t pleased with my choices.

What matters here is that I saw Harry Potter, because the rest of this goes downhill after that.

The embolization went according to plan. Things looked good. I could come back next month and get an MRI and then we’d move on to resection.

Except I couldn’t come back in a month, because in August I turned 21 and then I promptly lost my state health insurance. There was a brief moment of panic because I knew how AVMs work and I knew that if I didn’t continue treatment at a rapid pace the AVM would grow and take over my face like invasive kudzu.

I’ll apply for disability, I told myself. It will probably be fine. But oh, oh, I was wrong, and I’m going to cut this entry short because the next entry will be a very long one detailing how wrong I was.

I’m going to be deeply and painfully honest in this one. There will be talk of suicidal ideation. It’s going to be dark. If you’re not up for that, I recommend that you skip this one. I’ll even summarize the post: life sucked really bad for a while.

I mentioned in the previous entry that I was not given a prescription for pain medication. I don’t know why this was. It could have been that the doctor just didn’t remember to and I, being new to all of this, didn’t know it would be needed. In any case, I was sent home medicated only by steroids.

The first few days were predictably rough. You expect things to be bad after surgery, so I was, for the most part, still mentally okay. I used ice packs and Tylenol (ibuprofen, being an NSAID, was strictly forbidden) but they really did not do much. I thought things would ease up after the initial recovery period. I expected a reprieve.

It did not come.

The thing about AVMs is that when they are damaged in any way, they regrow aggressively. This thing was an enraged hydra under my skin and we’d just cut off two of its heads. It hurt. It hurt in ways that I can’t even put into words, the 1-10 scale was irrelevant. Any stimuli on or near my head was agony. I could not sleep because I could not lay my head down.

After several days of being in agony and getting no sleep, I was understandably losing my grip. This was Hell with no end in sight. I remember being awake in the early hours of the morning with my laptop, venting to friends on the other side of the Earth. I remember saying that I didn’t know if treatment was worth it, if this was how it was going to be.

I was starting to grasp for a permanent solution to what was a temporary problem. I have to tell you now that if you find yourself in a position like this, please reach out for help. I didn’t, and I suffered for much longer than necessary.

Thankfully, I didn’t act on my darker impulses. It was a few weeks until my followup appointment, but once I was there I told the doctor how much pain I was in. He prescribed me Percocet, and it made a world of difference. We also scheduled my next surgery, April 7 2011, with the complete removal tentatively scheduled for April 10 2011.

The Percocet was such a help that I was able to live a mostly normal life between procedures. I went out with my friends, I went to parties, I went to the zoo.

In the next entry, we’ll talk about my next few procedures (summarized, since you know the details now).

When we last left off, I was being put under for surgery. I am told the surgery went great and there were no complications. For three reasons I do not remember much about waking up:

1. This was nigh on a decade ago.
2. Anesthesia
3. Oxycodone. I think it was Oxycodone? It might have been Dilaudid.

I do remember some things. I mentioned that I’d brought two friends with me. I VIVIDLY recall one of them looming over my bed as I woke and she asked me – and I quote – “Can I see your catheter?”

Dear reader. I have to be fully honest with you right here and now. I have not an ounce of shame. I told her that I don’t care if she looks. I don’t remember if she did, but knowing her? I would not be surprised. I believe my family was also present at this point. My brother bought me a little vase of white roses and some purple flowers. From this point onward I was pretty solidly sleepy.

So, fun things that happen when you have any sort of neurology-adjacent treatment. You get neuro checks. Every hour on the hour a nurse will come in and make sure that your brain is okay. They do this by asking you a number of questions (your name, your birth date, do you know the date of today, do you know the year, do you know where you are, do you know who the president is?) and they will shine a flashlight right into your eyeballs despite the fact that you were JUST sleeping and you want to continue sleeping and your head hurts. It’s not great.

Another thing about embolizations that I didn’t mention before: Depending on the type of closure that was used on your incision, you will have to lay completely flat and do not move your lower body at all for up to 8 hours, because, you know. An artery was opened. So I had to lay flat for x amount of time, but that was okay, I was sleepy.

Then came the magical moment in which I was allowed to sit up. This meant that I was also allowed to eat and drink. I was in desperate need of beverages because I hadn’t had anything to drink since the previous night, and also I had been intubated during surgery. My throat was scratchy. The first drink of ginger ale was like heaven, and then the turkey sandwich… It was JUST a turkey sandwich. Bread, turkey, cheese, but God I was hungry and in that moment it was the best sandwich.

Over the next few hours I was sporadically awake but mostly asleep. My family left after I came out of recovery and was declared Still Alive, so it was me and my friends and various hospital staff. I was mostly unconscious and my friends just had chairs, so I imagine it was around this time that they began to regret tagging along.

At some point in the early afternoon the day after surgery the nurses gave me a sock and I was a free elf. I was given a prescription for steroids (dexamethasone, for the medically inclined) and not for any pain killers – this will be relevant later. My friends went to get the car and a nurse escorted me to the front door (in a wheel chair, because if you trip and fall while on hospital property you can sue).

The ride home is mostly a blur. I was still mostly out of it, I remember we stopped at mcdonalds and I got nuggets and a shamrock shake. Then I came home and probably went to sleep? Maybe I played some video games first. I know I did a lot of sleeping.

Things go downhill in the next entry, my friends.

In my previous post I talked about meeting doctors. I also talked about the surgical procedure instrumental in obliterating AVMs. My surgical team met and discussed my case at length, and came to this conclusion: I would need two or three embolizations, and then they would cut my face open and take the whole thing out. We scheduled the first procedure: March 10th, 2011.

You may notice that a lot of time has passed since my diagnosis, which was on October 13th of 2010. This is just how dealing with specialists works. There is a LOT of phone tag, a lot of phone calls not returned. It is inefficient and it makes me angry. However, the next nearest surgical team who could handle my case is a five hour drive away, and so I Just Deal.

It’s worth noting that my last visit to an operating room had been when I was a toddler in need of a tonsillectomy. I have a few strong memories of this: Being taken into the OR not by gurney but by a classic little red wagon, my dog puppet Ralph with me, a doctor placing the mask over my face and instructing me to count backward from 10 while he sang Twinkle Twinkle Little Star.

Being nearly two decades older than I was at that time, I had gained knowledge. Knowledge that came from watching House MD, Grey’s Anatomy, a few too many YouTube videos of surgical procedures gone wrong. I had fear and respect for the operating room. I knew that a single mathematical miscalculation could lead to patient death in the fundamental act of anesthetization, before a scalpel even comes near the patient.

So with the date solidly on the calendar, I began to rapidly descend into panic. I gathered as many friends as I could the night before. We went to a favorite fast food location of mine and then I think we wandered around Walmart for a while before heading back to my house, two close friends still with me.

I don’t think I slept. We departed the house at going on 4 in the morning. It was pouring rain. I rode along with my friends while my brother drove a separate car with my anxiety-ridden guardian. The following events were a blur. We arrived at the hospital early. I was wearing Hello Kitty pajamas. I remember there being an Au Bon Pain across from the admission office, which was frustrating as I’d been NPO – nil per os, or nothing by mouth – since midnight.

There was paperwork, then plastic bracelets put on. Three bracelets – one for identification, one for allergies, one indicating that I would be a fall risk after surgery. We were sent up to the second floor Nuclear Medicine department, where I filled out yet more paperwork, and then a kind nurse came to fetch me and take me to the pre-op preparation room.

Surgical prep is essentially the same across the board, with only a few minor changes depending on where and why you’re being cut open. You are instructed to change into a hospital gown that provides little in the way of modesty, those obligatory hospital socks, and then if you happen to possess a functioning uterus you are made to pee in a cup to prove that you are not currently home to a fetus. They do not accept “I have not been near a penis in years.” as sufficient evidence.

Then there’s the IV prep, and more doctors and anesthesiologists and people with papers to sign. They ask for your name and birth date countless times. Then the waiting.

The amount of wait time depends on the number of patients ahead of you and sometimes emergencies/trauma cases will come in and they’re obviously higher priority. I don’t think I waited very long, but I was very tired and nervous and can’t really remember.

Eventually it was time to go, and my nurse gave me a dose of IV Versed. Versed is a magical drug. It’s meant to induce memory loss, but that doesn’t seem to be the case for me. For me, it just makes me really not care about what’s going on. All of the nerves and anxiety I’d been gathering in the days leading up to the surgery were gone. I was wheeled cheerfully into the operating room.

The operating room is very brightly lit, very white. For some reason they don’t let you just get down from the gurney and then get onto the operating table with dignity – perhaps because of the Versed. They line the gurney and the table up and you have to scoot, bearing in mind that you’re wearing naught but the gown and your backside is very exposed while you scoot on over to the table and get adjusted into the proper position.

Things get a little more invasive after that. They start attaching the heart monitors, which involved a fair amount of moving my breasts around and the nurse apologizing for each time a breast was touched. I assured her it was “no biggie”, stating that “I know once I’m out you’re going to cath me so touching my boob ranks really low on the intimacy scale.”

They taped my head to the table for some reason, I guess to make sure I didn’t move around much. There was also a sort of seat belt device. The nurse also took hold of my belly (if you don’t know me personally and have just happened upon this blog by chance, I am fat) and taped it up so that my groin area was more easily accessed. She also apologized for this. Again, no biggie.

I was covered up with a blanket fresh out of the blanket-oven and pillows were tucked here and there to make sure I was comfortable, which seemed silly when you consider the fact that I was going to be out in about two minutes.

While all of this was going on, nurses and surgeons and anesthesiologists all introduced themselves. There was quite a bit of chatter, and everyone seemed really cheerful. Music was playing. Between this and the meds, I was very at ease.

Then came the anesthesia.

They put the mask over my face and encouraged me to close my eyes and breathe. I was still a bit in awe of everything, so I forced myself to keep my eyes open. The IV anesthesia came next, with the anesthesiologist warning that it might hurt a bit going in. I don’t remember any pain, I just remember feeling very… Warm. Tired, but in a comfortable way. The way that it feels when you sink into a comfortable bed after a long difficult day and you know that sleep is only seconds away.

So I let sleep take me, and I’ll end the story here for today.

We last left off with me having received a diagnosis and undergoing imaging and so on. The next order of business was visiting the multitude of doctors to whom I’d been referred, all within the same hospital in a Very Big City about an hour and a half away from me. Small towns do not have very good specialists, but the adjacent Big City boasts two of the country’s top hospitals.

The first thing we must note is that I, for a number of reasons, do not drive. My guardian has severe anxiety when it comes to travel and the interstate and so she does not drive very far or anywhere requiring the highway. My brother was not yet trusted to take me there All By Himself, and so this became a family ordeal featuring four relatives and myself.

We piled into the car before the sun had yet risen, because my guardian’s approach to all things is be as early as possible. My appointments were maybe 8 or 9 AM, and if you’ll recall, this trip is 1.5 hours. We were accounting for the potential of getting lost within the large city.

We got there with no incidents, arrived early, and drove in circles to find a suitable parking garage.

The hospital itself was overwhelming in its vastness and the sheer amount of things going on. I suffer from agoraphobia. It was all a lot to take in.

The doctors I met that day were a plastic surgeon and an interventional radiologist, both of whom were friendly, but in the end left me with more questions than answers. AVMs are complicated. My case was especially complicated. I was given orders to return in the following weeks and enter the magnet tube.

We returned home, and I took all the information I’d been given and returned to my old friend, Doctor Google. I was told that I’d need embolizations. This is a procedure in which a small incision is made in the femoral artery (uncomfortably close to your genitals) and a catheter is fed through the artery and into the AVM itself. This procedure is also used for imaging by way of injecting contrast and taking X-Ray photos (if that’s all they do it’s called an angiogram). Once the catheter is in there, they will inject a substance – typically a type of surgical glue – into the veins that are feeding the AVM.

The end goal is that by cutting off the supply line, the AVM will die. My surgeon was optimistic, he estimated maybe two embolization procedures and then they’d open my face (with the aid of the aforementioned plastic surgeon) and take the whole thing out. It sounded simple, albeit uncomfortable.

I returned with just my brother for the visit to the magnet tube. MRIs are generally unpleasant. You take out all metal (I was heavily pierced at the time) and you get in the tube. There’s a lot of noise. You lay there for like, half an hour. Sometimes they play music for you, but there’s still the banging, so what’s the point.

With MRI images acquired, my doctors would convene and develop a Plan Of Action, which we will touch upon in my next entry.

Upon receiving my diagnosis, I did what one typically does when being diagnosed with a thing they’ve never heard of and can only slightly pronounced. I went to Google.

When you google Arteriovenous Malformation, you will be given a lot of information on brain AVMs, which is not what I have. Now, I don’t know if this is a problem unique to me or if other people with extremity AVMs have experienced, but my doctor didn’t specify. He said “that’s an AVM” and sent me on my merry way with a referral to Nuclear Medicine. He did not say “that’s a facial AVM” or even explain to me that there is a difference.

“But Bella,” you might say to me. “it was so clearly in your face.” Yes. Yes it was. Visibly so. But I didn’t know that it made a difference. Doctor Google told me I was going to bleed into my brain and die. Google had only led me astray approximately two hundred and twelve times before so I saw no reason to not freak out.

Extremity AVMs present their own sets of problems, which I would find out much later in my googling. Extremity AVMs are much more prone to bleeding because they are in parts of your body more easily exposed to trauma. Like, let’s say I took a dodgeball to the face or something. Could have killed me! I was very tempted to go through life wearing a hockey mask.

Other unpleasantness includes ulcers, visible pulsations, the impending threat of heart failure if left untreated. If your AVM is in a place where it can latch onto bone and muscle, it can be inoperable. I’ve known people via support groups who have had entire limbs amputated to get rid of the AVM.

So anyway, I had a diagnosis from a vein specialists and a license to panic from Doctor Google. I was then told that I’d need to have a CT scan with contrast. I’d never had this before. Once again, straight to Google.

If you’ve never had a CT scan with contrast and you’re facing one in the near future, I urge you to not Google. You will be told that CT contrast, as all things in life, bears a risk of allergic reaction. The details are not pretty. You are probably not allergic to it. Chill.

So, I’m in the diagnostic imaging center and I’m sitting on the CT table. There are consent forms. The radiologist gives the typical “there is an extremely small chance that you could die, you probably won’t, but legally we have to say this” talk. Informs me that it is my right to refuse the CT contrast, but the images will likely be useless without it. In my all-consuming fear, I refuse the contrast. We proceed with the CT.

Nuclear Medicine calls me a few days later. “Hey Bella, the images are useless, please do it again but with contrast.”

Nothing particularly unpleasant happened. The contrast DOES make you feel a lot warm in the downstairs and you will think you peed yourself. You probably didn’t pee yourself. It’s fine. You’re not having an allergic reaction. You’re having anxiety. Breathe.

CT scans do not take much longer than X-Rays, so I was in mild discomfort for like five minutes. The images were sent down to Nuclear Medicine in a hospital an hour and a half from where I live, a journey that I would take countless times in the coming years. Together we will reminisce my first visit to The Big Hospital in my next entry. 🙂

Ever since the beginning of this, people have been telling me to write. A book, a memoir, an autobiography, but that seems like so much work. It seems pretentious. I’m not the sort of world-changing individual who should be immortalized in that manner.

What I am is a person with an incredibly rare variation of an incredibly rare disease, and THAT, I believe, does deserve documentation – but on the internet, where anybody may find it. If somebody going through what I’ve been through finds this blog and it helps them, then that’s the good I’ve done in the world.

So let’s get started.

I want to preface this by saying that I’m not going to use the real names of my relatives, friends, or doctors involved For Reasons. If you want the names of doctors please feel free to contact me and I’d be happy to share, but for the time being I enjoy the small amount of anonymity that the internet offers.

So, back to the very beginning.

Once upon a time I was an egg. Then the egg became fertilized, and things went generally downhill from there.

An Arteriovenous Malformation is a congenital birth defect. That is to say that it happens in the womb. My embryo didn’t know how to do veins, and so it messed up a little. It’s okay. Mistakes happen.

Specifically, what happens with an AVM is that there is a spot where your veins connect to your arteries, and these areas usually have capillaries. Your capillaries serve as something like a mudroom between the artery and the vein. Your blood chills out for a bit in there before moving on. An AVM occurs when your body has decided that, eh, that spot didn’t really NEED capillaries. Except it did, and now look at you. You’ve got this ticking time bomb somewhere in your body.

That ‘somewhere’ is, the majority of the time, in the brain. See, this is where things get particularly scary for those of us who don’t have the typical brain AVM. Our doctor tells us we have an AVM and we go home and google AVMs and we read about brain hemorrhages and strokes and instantaneous death, not knowing that that’s not what will happen to us.

What happens to us is often far more complicated.

AVMs can occur anywhere that you have veins. Plenty of people go through their life never knowing they’ve had an AVM because it was somewhere weird and never became symptomatic. Now, my AVM was/is (I will explain that later) both within my skull and outside of it. It started out looking like a birthmark, as most extremity AVMs do.

I would like to take a moment here to say that if your baby has been born with an unusual birthmark and your pediatrician has told you not to worry: Demand tests. It is very often just a birthmark, but sometimes it’s not, and you are better safe than sorry.

My mother asked my pediatrician about my birthmark, which became more apparent as puberty set in – this is an important fact, hormones often cause AVM growth – and was told she was worrying for nothing. My mother did not push for testing, and for oh, seven years, things were fine.

At the age of seventeen (and after very much research), I asked to get a Mirena IUD. It is a type of hormonal contraceptive placed inside the uterus and it lasts for five years. I want to be clear here before I go on – I, in no way, blame the IUD for my AVM. It was already there. It was already going to become a problem.

The hormones from the IUD caused the AVM to gradually grow, and after seeing multiple doctors, I received my diagnosis at the age of 20, on October 13 of 2010.

I will end this post here. If you’re reading this, thanks for staying with me. 🙂