The Beginning of My Brain AVM Journey

On September 25, 2015, I awoke around 04:50, sprinted to the gym, worked out and ran back at PR speed, (personal best record speed for those of you all who aren’t runners). On my way to work, I was rear ended and suffered a concussion. I didn’t know what this felt like really, as I’d had many adventures and injuries as a kid, but had never been wiped out like this. Something just wasn’t right. I was dizzy and confused. EMT staff at the accident really wanted me to go to the ER, to be on the safe side. I almost didn’t, thinking my super-powered macho athleticism would get me through. Reluctantly, I went and was very I was glad I did.

When I had a CT scan at the hospital, a large mass or AVM was found in my brain. The nurse seemed very worried, which of course made me worried. I still remember her showing me what they saw on their end, in the radiology room, with her iPhone. “It’s really big!” she said loudly. An AVM, short for arteriovenous malformation, is best described an incorrect attachment of veins to arteries. This tangle of parts, also called a nidus, (latin for nest) is subject to rupture because of the great pressure the arteries and veins are under, as there isn’t a normal capillary bed which most of these connections normally have to equally distribute pressure of the blood flow in the brain. When the condition goes on for as long as I had it for, which is thought to be one’s whole life, the risk of brain hemorrhage or bleeding in the brain necessitates the removal of the mass. There are additional percentages of prediction based on age that roughly tell when one’s AVM can possibly rupture. This initial diagnosis set off a chain of events that would change mine and my family’s lives.

There were multiple MRIs done to locate the AVM’s actual location, size and area of eloquence, (the special functions that the brain does for the patient). High eloquence areas = high danger when performing surgery. All of these factors have points that total up with a special grading scale, called the Spetzler-Martin AVM Grading Scale.

I was able to have an advanced type of MRI, called FMRI, (Functional Magnetic Resonance Imaging), where the patient is asked to repeat certain phonetic words like “seven” over and over along with thinking about or moving certain limbs to depict imagery on a screen that the radiologist can see.

When certain parts of the brain are made active, they “light up”, color coded, for the radiologist to read. The test is used to see what portions of the brain an ayurerysm clipping and AVM resection of the mass could potentially affect surrounding brain structures. This is another proactive measure and test to see what deficit(s) the patient and surgeon can expect as an outcome from operating around an eloquent area.

I had several angiograms and embolization procedures to carefully clot the feeding arteries and veins that were causing much pressure leading up to a craniotomy, (open brain surgery) and from these, I suffered strokes. Please know that cerebral angiograms are no walk in the park, and that they can cause strokes alone by themselves. What is good is that a neurosurgeon and/or a neurointerventional radiologist can see brain blood flow in real time. This type of test is really the gold standard in diagnostic imagery as it depicts the complex structure of the AVM and/or additional aneurysms that they often come with as well. As you can see in the video below a very tiny catheter, sometimes called a “marathon™” cable is used. This catheter is injected in the femoral artery on one side of the groin and goes past all other organs all the way up to the brain. Once it’s there, the surgery team can inject contrast dyes that show up live on video screens while a constant X-ray is emitted through the brain. For most of these, I was awake. It’s a crazy feeling when the dye is shot through the catheter. The neurosurgeon says, “Get ready to feel the heat!”, and BAM, you see stars and feel your brain on fire. Oh yeah, you also have to remain completely still and hold your breath while you take the torture.

My first stroke wasn’t readily available in imagery. Yeah, this happens. I noticed trying to get things out of my pocket was hard, and I had a bit of a phantom feel in my hand. These were results of what is called Astereognosis or Tactile Agnosia. Much of the items I grasp in the affected side are not understood by touch when my eyes are closed. This deficit is very rare and comes from the damage that was done to the left hemisphere of my brain’s parietal lobe. I can still remember the neurosurgeon calling me in my newly repaired, brand new hot hatch on Bluetooth. He says, “It looks like you had a stroke”. “Are you there?” he says. I continue driving up this aggressive, winding hill while trying to process it. “Well that explains a lot”, I said. There was what is called an infarction or loss of blood flow for just enough time to cause the deficit. This is called an ischemic stroke, where bloodflow is cut off to blood vessels. The other type of stroke is a hemorrhagic stroke, bleeding in the brain. I had one of these later, during open brain surgery. When I woke I couldn’t talk or walk. I was intubated and also unable to tell them to get the Darth Vader mask off. I was helpless. I’ll write more about these issues later. Revisiting them without accompanying PTSD is hard, but it may help someone else, so I intend to do it.

With all of my family and friends rallying around me, I have made great strides and continue to heal and get motor skills back. It has been a long journey that isn’t over.

The next step in the brain quest is learning to cope with and manage my new epilepsy. This often comes from brain tissue scarring around the surgery site. The scars disrupt electrical activity in the brain, causing frequent seizures. The great team at UVA’s Neurosciences & Behavioral Health Center are working together with me to keep the seizure activity under control. Their care and approach is expert and top-notch and I am so thankful for their help.

Surprisingly, Instagram and other SocMeds have been an inspirational resource, as I have connected with many who are on the same journey. Watching others that are on the same recovery timeline do supernatural things is very inspirational. I have been in and out of occupational, physical, and speech therapies for years. I have learned a lot about myself. I got a lot of perspective on what’s really important in life. And oh yeah, I still build websites like this one, while continually learning how to work at my full-time job.

I had to make accommodations to keep myself safe, like switching to an automatic car. I wear an AFO, (ankle, foot and leg brace) to prevent falls, not hit my noggin and continue to work on my gait. I have to practice making sure I constantly use my affected side, especially my hand. Many with stroke deficits suffer hemiparesis. Most of all, I have to be respectful and mindful of my new body and brain. While I don’t profess to be a neurologist, I do know a lot about things related to brain injury and epilepsy. I also believe in neurogenesis. I wanted to be sure that my new site contained resources for those who may be struggling with similar issues, especially when they’ve first been diagnosed. Learning about rare conditions is hard, but there are so many resources for you as a patient and survivor.