I am currently 32 years old and prior to my AVM, I worked as a Professional Pasty Chef. It all began with a couple of extreme migraines.
The first migraine happened in the Spring of 2019, while I was at work preparing pastry, coming to the end of my early morning shift.
I experienced a blinding migraine and I felt extremely nauseous. After about twenty minutes of trying to sit and breathe, I left the bakery.
I managed to make the short drive home, but it was very difficult to drive while part of my visual field was distorted.
I went home to my dark bedroom and got in bed. It was about 9am and I was having to vomit about once an hour over the next ten hours. My vision stayed distorted. Luckily, the next day my migraine was gone and my vision was normal.
The second migraine happened about six weeks later while I was working out at home. Once again, I could barely see and was vomiting every hour or so.
I managed to text a friend. She was concerned and thought I might be having an aneurysm. She had an aunt who had an aneurysm in the past and she said my symptoms were eerily similar. She urged me to get medical attention.
I called my GYN-OB, had I noticed a pattern with migraines around my monthly cycle and she saw me within a few days. I asked her to remove the Nexplanon birth control implant from my arm, which had recently been put in, but she refused. I had not experienced migraines before switching contraceptives.
My doctor described my migraines as an aura and she shocked me by saying that I should have a tubal ligation, to come off contraceptives immediately.
After that appointment, I had a strong feeling that something more was wrong.
I went for a second opinion and the doctor said she wanted to put me back on my original birth control, which always seemed to work pretty well for me. But she said that I would first need to be cleared by the neurologist.
I saw a neurologist within a few weeks. She said that because I had had the visual field disturbances, I needed to have an MRI.
About a month and a half later, I had the MRI. I had an extremely bad feeling that what they would find was going to change my life forever. I cannot explain where that feeling came from; I had no clue AVMs even existed!
In two days, I got the results of my MRI online. It said that there was an AVM.
I was scared, anxious, unaware and full of fear of the unknown.
Four days later, I had my follow-up appointment with the neurologist. She said that she was referring me to the neurosurgeon. The appointment was the next day.
I met with the neurosurgeon, Dr. Imbarrato, and he said we had two possible treatment options, Gamma Knife radiation or a Craniotomy. He ordered an angiogram to confirm which treatment would be best. He also said that the biggest risk from treating the AVM was vision loss. The risk of a bleed was large.
Two weeks later, I had the angiogram but unfortunately, I experienced an extreme allergic reaction to the Fentanyl they gave me during the procedure. Afterwards, I was vomiting and couldn’t function or speak well. This went on all day into the night. I did go home that night but I felt awful for the next two weeks.
On a more happy note, three weeks later my boyfriend Mike and I went to Asheville and got engaged. When we got back, I had an EEG to check for seizure activity and then saw the Ophthalmologist to test my vision to establish my vision baseline, before my AVM treatment. Both tests came back normal.
I had my follow-up with the neurosurgeon. He told me that I had a “level 3 AVM in the left occipital lobe”. At this point, he said the combination of multiple embolization and a craniotomy would be the best treatment. Explained I would need to be awake and coherent during the embolizations. I was given time to think about it. Do I do the radiation, the embolizations and craniotomy, or just do nothing?
Two days later, I called to schedule treatment with embolizations and craniotomy, and in two weeks I had my first embolization.
Due to my previous reaction to the sedation, there was no sedation as I was strapped to a cold metal table for roughly two hours. At certain points, I was told to “hold your breath and done move.” Sometimes I had to be hold my breath for ten seconds, and at other times, it was closer to a minute. Knowing that there were wires in my brain, I sure as hell didn’t move or breathe.
I needed to stay overnight in the Neuro-ICU after every embolization. The nurses and doctors at the hospital began to feel like family. The embolizations were very uncomfortable and hard to live through. They changed the way I felt forever. The pain endured post treatment would wake me up at night screaming. Honestly, that pain still occurs to this day.
Five weeks later I had my second embolization. I was able to endure light anesthesia during the beginning of this round. I was so thankful for that! I temporarily lost my right visual field while recovering in the Neuro-ICU. Explained to the surgeon that half of his face and body was blackened.
Soon after, I saw my neurosurgeon for the follow up with Mike. He was with me almost every visit. My full vision had since returned. Doctor Imbarrato explained that I had one more embolization and that the craniotomy would take place the day after embolization, in about four weeks, which happened to be smack dab in the new year.
In the next month, I completed my living will and dealt with insurance companies calling me to ask if I felt suicidal. I had my pre-surgery appointment to check my airways and heart rate, and was cleared for the surgery.
The month passed and I had the embolization, followed by a midnight MRI. I spent the nice with my neuro ICU family, barely slept and could not eat after midnight. I wasn’t able to get much sleep. All I could think about was the next day-an 8 hour craniotomy.
The next morning at 11:30am I was wheeled out of my hospital room while Mike, my Dad, my brother and stepmom watched. Mike and I kissed goodbye. I saw Doctor Imbarrato before all the fun began, asked if he was nervous. He wasn’t. In that very moment, neither was I.
The surgery lasted eight hours and I was under general anesthesia, again thankful for that.
The recovery in the hospital was three days full of steroids, bad anxiety, and panic attacks. Also was able to have some laughs with my nurse family. The surgeries were on a Monday and Tuesday, I went home on Friday.
The strange thing was that I didn’t realize how my vision had changed after the surgery until I came home from the hospital. I stood in front of the mirror when I got back home and realized that half of my face and body was missing! I had lost my right visual field. Everything I look at is cut in half. I was overwhelmed.
Two weeks after surgery, I had a follow up with the surgeon and had the 30 staples removed. He approved daily light exercises to build back my strength. I started with daily yoga and gradually increased the intensity over time and also added in other forms of exercise.
It feels good to have some control over something. I’m no longer able to do the detailed pastry decorating work that I loved, with my visual impairment.
I went through months of vision therapy to learn how to read, write, navigate around, eat, cook. While I can do these things, the amount of effort it takes and pain it endures makes them not worth the effort occasionally. I have a difficult time riding in the car too, and can no longer drive.
Six months after my surgery, I had a follow-up angiogram to check the status of my AVM, if it was fully removed or if I’d need another craniotomy. The doctor said, “You are finally cleared of the dangerous portion of the AVM.”
What a relief! But I had a strange feeling of “what now?”
One of the most difficult things through it all has been finding someone to fully relate to. All brain surgeries are different, all outcomes are different. But I have been gifted with support from various foundations and survivors! While our stories are different, we can still relate and support each other.
Mike and I got married in November 2020 and moved into our dream home, complete with a pool and vacation home vibe. I am also extremely fortunat
e to have some stores within walking distance, giving me some of my freedom back. You can’t put a price on freedom!
Life now revolves around healing, strength and mental health. I have a border collie who entertains me all day long, and am so lucky to have a loving husband.