A Brain Vein Drain (Cavernous Angioma)

“The MRI detected a mass in your brain.”

I heard these words a little more than two years ago, in January 2005, a few days after sudden and severe double vision sent me to an emergency room. They began my odyssey with a Cavernous Angioma, or CA.

Let me tell you a little bit about CAs. CAs, also known as Cerebral Cavernous Malformation, or as Cavernoma, are clusters of abnormal blood veins in the brain or the spinal column. A typical CA looks somewhat like a raspberry, and can range in size from microscopic to inches in diameter. It is made of multiple little bubbles (or caverns) filled with blood and lined by a single layer of cells called endothelium. These cells are similar to those that line normal blood vessels, but the bubble-like structures of a cavernous angioma are leaky and lack the other layers of a normal blood vessel wall.

Some are present from birth; but 20 percent of people with CA have a type which runs in families, and those with this variety usually have multiple CAs that develop anytime. Experts say one person in every 200 has at least one CA and of that, only a third show symptoms.

Most CAs will not cause symptoms unless they bleed, and most bleed so slowly they are not life threatening unless they are in the brainstem. And the good thing, if you know you have one and it hasn’t bled, you can lessen your chances of a bleed by simply being careful – you can avoid blood thinners, you can avoid roller coasters, you can keep your blood pressure low.

CAs were known to medical science back in the late 1800s but are being found more frequently now because of the widespread use of Magnetic Resonance Imagry, or MRIs. Previously, CAs were found during surgery or more commonly, autopsies! CAT scans and Angiograms seldom detect them and the symptoms are often misdiagnosed. What’s the first thing you think of when you hear of someone having seizures? Epilepsy. With headaches? Migraines. Vision problems, nerve problems, balance problems? Multiple Sclerosis. These are symptoms of bleeding CAs.

Symptoms depend on the location. CAs in the front of the brain can cause seizures. In my case the CA is in my brainstem. Although my swallowing, breathing, and heartbeat could have been affected by that location, the double vision was my only apparent symptom until the surgery.

The treatment – watch and wait, or brain surgery. There have been attempts with a concentrated laser beam, called a gamma knife, but the success rate is very low and the risks of damaging surrounding tissue are very high.

At the time, I didn’t have to make the tough decision between the real dangers of surgery with a likelihood of permanent deficits, and “watch and wait” for the possibility of another bleed, with a chance of the same permanent deficits. Even though my CA was in a bad area, surgery was necessary since I was being treated for DVT, a leg blood clot. My blood had to be thinned to treat the clot, and to prevent further clots, which was the exact opposite of what was recommended for “watch and wait.”

I‘m not going to recount the surgery. I think everybody who has had any surgery knows the fear, pain, and gratitude for support.

I could not stand unassisted when I left the hospital and couldn’t walk unassisted for weeks. I kept a calendar onto which I wrote each victory; from being able to shower on my own, to carrying a cup of coffee into the living room, to graduating from a walker to a cane. The steps of progress, every single one, were celebrated. Unfortunately, the recovery has been frustratingly long and a matter of two steps forward, one step back. The brain heals very slowly. I still have double vision, which is corrected by prisms in my glasses. I have balance issues and general right side shakiness. I freeze up when stressed and have moments when the brain doesn’t seem to make a connection. At this point I have no idea if my deficits will be permanent or not, but compared to what could have gone wrong with surgery in the brainstem area, I consider myself lucky to be able to breathe, swallow, and walk! Sure, there are some things I can no longer do, but at least I can live and work more or less normally, though it’s tempting to wear a t-shirt saying” I am not drunk.”

Follow-up MRIs show that the part they couldn’t get is expanding. At first I was very angry . . . and scared. It took a few days to get to a better spot, emotionally. They took out what was bleeding and what is left is not bleeding and may never bleed. And if it does, well, I’ll just have to deal with it.

Because I now know that I can face almost anything. I owe everything to the incredible support I was given by family, friends, and coworkers, especially my best friend and husband, Bob, who left a job in another state and came back to care for me. He is gone again and I was terrified to let him go. Letting him go was another positive step in my own recovery. You have to keep reaching for your goals.