Danielle Farrant - Familial Multiples

"I felt out of control, like my mind was not doing what it was supposed to."

Unlike many people who struggle with the confusing and often bizarre symptoms of this condition for years before a diagnosis, I knew what my diagnosis would be almost as soon as symptoms appeared.

It was February. I had a cough, felt sick, dizzy and had a bad headache. I was sleeping poorly because I was coughing so much and had increasing discomfort on one side of my body... eventually I got up, hoping to shake the feeling. When that didn't work, I woke my husband up and said I thought I was having a stroke. I was split completely down the middle – my left side felt “asleep” and numb (although I could feel touch). Half of my scalp was tingling and my left leg was dropping a little when I walked and felt full of lead. My left eye felt a little droopy and so did the left side of my mouth. I couldn't lift both sides of my mouth evenly. We went to the ER, and in spite of informing the doctor of my family history, was sent home to rest my “pinched nerve.” The ER doctor was a bit uneasy with his assessment (given my family history), so told us to come back on his next shift should the symptoms persist. We came back in the following afternoon and the same doctor saw me and ordered a CT. That got his attention. The CT scan revealed the source of my troubles – a bleeding area on my brain stem.

I was dismayed, but not surprised. My family has Multiple Familial Cavernous Hemangiomas. I had watched my Dad and Aunt struggle with various issues (paralysis, migraines, constant fatigue, numbness etc) for many years. I had also heard about the struggles my two younger cousins were having. I knew there was a chance I could have inherited the condition.

I was sent promptly to Victoria General Hospital where I received a battery of tests including an MRI. At that point I had three readily apparent cavernomas. The active one was the largest (10X15mm) and located on the pons. A “gradient echo” MRI showed four additional cavernomas for a grand total of seven. It was an emotional time for me. I was extremely tired and cried and slept a lot. My son was only 19 months, and it was hard to be away from him. It was also hard for me to receive the diagnosis. I know that absolutely no one is promised long life and health for the duration of it – but it was still difficult to receive news that confirmed that fact.

About a month after my diagnosis, I wrote about the additional symptoms I was experiencing. Many were difficult to explain and without tangible evidence. I felt out of control, like my mind was not doing what it was supposed to. I was getting headaches, thankfully not severe (as compared to my other family members). Tasks that were simple previously now required full concentration. Exhaustion was my constant companion and I was easily overwhelmed. I experienced “blank outs” (which my neurologist informed me were likely mini seizures). When I grew tired (which happened easily) all my symptoms would become exaggerated and I would start to slur my words. Loud noises and commotion were very difficult to handle (something a mom with young kids has to deal with all day long every day!)

Gradually I recovered. It has been 4 years since my first episode and I have been very fortunate not to have had another. Shortly after my diagnosis I found out I was expecting again. I got through the pregnancy and birth without any dramatic side effects. I still get headaches, tire more easily than I should and a high level of exhaustion will bring back some of the numbness. Otherwise, I am symptom free.

When I think of my condition and what it could mean for my future, it is a good reminder of the uncertainty of life. It helps me to be thankful for the good days and to cherish my health. I am thankful that I am able to ride my bike and play soccer with my kids. I can ride my horse or go running and still have energy to keep up with my other daily tasks. I know there will be times when my energy levels or physical mobility will not afford me these luxuries, so I do not take it for granted.