Arteriovenous Malformation Diagnosis - The Day My Life Changed Forever

I remember it like it was yesterday, January 3rd, 2012. For a little over a week, my PCP left several voicemail messages after I had an MRI to assess a concussion I sustained the previous summer. The messages were vague but marked urgent. I had an MRI the month before and nothing was found so I didn't think anything of it. But this MRI was different because it was ordered with contrast, something my PCP had to literally fight my insurance company to cover.

And before I proceed, let me stress the addition of the contrast made ALL the difference in my diagnosis. Over the course of a decade, I received countless MRIs to assess the source of my chronic migraine, neck pain and dizziness. Not one of them revealed anything. Add contrast, and it's like watching invisible ink appear before your eyes. My advice, DEMAND IT.

At approximately 6:30pm, my PCP and I finally connected on the telephone. And I then I heard the words that no one wants to hear, "You have a brain tumor".  The good news? The tumor was benign. The bad news? It was an arteriovenous malformation located on my occipital-temporal lobe. They also found another 7cm benign tumor in my cervical spine called a hemangioma, running from my C3 to C4. Inoperable, but the doctors were certain that it was the brain tumor that was causing all of my symptoms. They wanted to handle that before moving on to the spinal tumor. I was urged to see a neurosurgeon within the week.  The appointment was already set, my medical records were already sent, all I had to do was get myself to the appointment. I didn't quite understand the diagnosis so I proceeded to tell him I had to work the day of the appointment and couldn't make it.

He said, "I don't think you understand the severity of the situation."

I said, "Wow doc, you sound pretty serious. You're scaring me."

He answered, "You have a 4.6mm arteriovenous malformation on the occipital-temporal lobe of your brain. It is severe and can cause a massive stroke at any moment. You are 68% risk of a massive stroke and if left untreated, could kill you. You need to undergo brain surgery as soon as possible." At that moment, I had dropped to my knees beside my bed in shock.

My doctor's words faded off as fear and anxiety took over my thoughts for a few moments. Brain surgery? I have to have brain surgery? What will happen to my children if something goes wrong? What IF something goes wrong? Are they going to cut my skull open? Will I be able to walk and talk afterward? I eventually confirmed the appointment with the neurosurgeon and ended the call. Then, I kneeled and prayed silently for a few moments.  I couldn't speak. I couldn't breathe. My entire body felt hot and I could no longer see past my tears.

It took me a while before I could answer my partner's pleas to tell him what was going on. I almost forgot for a moment that he was sitting on the bed hearing only half of the conversation. What would happen to us? Would he stand by me? What if I end up in a wheelchair? Then I thought about my two sons and what would happen to them. Their biological father was not in the picture. What would happen to them if I died or suffered a massive stroke? How do I tell them that mom needs to have brain surgery and could quite possibly die? What exactly is an arteriovenous malformation anyway? What is a hemangioma?

I... could... not... breathe.

Only those who have been diagnosed with a possible death sentence can understand the overwhelming fear and onslaught of emotions that pour into your mind when you hear that kind of news. It's like drowning with a 100-ton weight tied to your chest. When they say your life flashes before your eyes, they are right. I don't think I slept that night. Or any night since. And this was 8 years ago.

Looking back at this moment as I write this today is very difficult. It was the day my life changed forever. Nothing is the same today as it was back then. When I say everything changed, I mean EVERYTHING has changed. If you stay tuned to my blog, you will learn how my life has changed throughout my diagnosis, recovery, and healing. This is my survival story as an AVM Warrior.

Do you remember the day you were diagnosed? Feel free to share in the comments below.

What Is a Hemangioma? 
Spinal hemangiomas are benign tumors that are most commonly seen in the mid-back (thoracic) and lower back (lumbar). Hemangiomas most often appear in adults between the ages of 30 and 50. They are very common and occur in approximately 10 percent of the world's population. Source: UPMC

Are hemangiomas on the spine dangerous?
Symptoms vary depending on the size and location of the tumor; most hemangiomas cause no symptoms at all. Among symptomatic hemangiomas, the most common symptom is pain at the tumor site, usually in the back. Hemangiomas may also bleed, causing a hemorrhage that can expand and compress the nerves or spinal cord. Source: The Spine Hospital

What is an Arteriovenous Malformation? What is a brain AVM?
Normally, arteries carry blood containing oxygen from the heart to the brain, and veins carry blood with less oxygen away from the brain and back to the heart. When an arteriovenous malformation (AVM) occurs, a tangle of blood vessels in the brain bypasses normal brain tissue and directly diverts blood from the arteries to the veins. Source: American Stroke Association

What are the symptoms of a brain AVM?
Symptoms may vary depending on where the AVM is located:

• More than 50% of patients with an AVM have an intracranial hemorrhage.

• Among AVM patients, 20 to 25% have focal or generalized seizures.

• Patients may have localized pain in the head due to increased blood flow around an AVM.

• 15% may have difficulty with movement, speech, and vision.

Source: American Stroke Association