John Andres
In June 2020, I woke up and could not walk straight. I bumped into the wall, had numbness in my face, my senses of taste and smell were off, and my peripheral vision was affected. I bit my tongue and lip chewing because my natural reflex to avoid doing so did not work. An MRI revealed I had cavernous malformations throughout my brain, including one on my brainstem that had bled and caused my symptoms.
There was no treatment for my bleed, so I weathered several months of constantly veering left when walking, having pronounced headaches, and being unable to walk downstairs to my office without spilling my cup of tea. During the subsequent six months most of the symptoms resolved.
I found out my uncle had this disease decades ago. In his 70’s, when he couldn’t take the headaches any longer, he elected to have a high-risk surgery to remove the problematic malformation on his brainstem. He survived the surgery, but he never regained the ability to swallow and for the remainder of his life fed himself through a feeding tube.
Oddly, in our family only three men have been diagnosed with CCM – all in our 60’s. I was diagnosed at 62. At roughly the same time my brother was diagnosed at age 67. Luckily, he has not had serious symptoms. Even though our CCM is clearly familial, we test negative for CCM 1, CCM2, and CCM3 mutations.
Finding the Alliance to Cure Cavernous Malformation was a blessing. The group gave me perspective on the widely varying symptoms and their severity, and provided sources of information to help me understand this disease.
My condition was stable for 4 years. At the end of 2023, we spent the holidays in California. On Saturday, December 30, 2023, I boarded a plane on the first leg of our trip home to Boston. During the first flight, I started to feel something was wrong with my legs. When we arrived at our layover, I had difficulty getting off the plane and had to use a roll-aboard suitcase for support. Getting to the next gate was a difficult, long walk. Things were progressing so quickly I was concerned I might not be permitted to board the second flight. During the second flight my condition progressively worsened. In Boston I managed to get off the plane, again using the roll-aboard as a crutch, but needed a wheelchair to get to the car. We went straight to Massachusetts General Hospital (MGH), where I was helped into a wheelchair. That is the last time I stood up.
At MGH, my diagnosis of a cavernous malformation bleed on my spinal cord was confirmed. By Monday, 2 days after getting on the first plane, I was completely paralyzed from the waist down. I spent all of January and February at MGH and Spaulding Rehabilitation Hospital, returning home on March 6, 2024.
My wife and I are adjusting to our new life with me in a wheelchair. I still have CCM lesions throughout my brain, and we live with the prospect that additional bleeds could cause further symptoms.
I am choosing to fight back. Last fall I was honored to be asked to join the Board of the Alliance, and I have embraced raising awareness and funds for our mission. I am eager to see our research initiatives flourish.
More stories
