
Growing up I remember instances of severe head pain as far back as elementary school that self resolved. Years later I became a Nurse and worked in the Emergency Department. I helped care for patients with migraines but somehow remained stubborn in getting my own headaches evaluated. At times I would come home from work and curl up in the fetal position because the pain in my head was so severe. I assumed I had migraines and thought I could just tough it out. It was not until 2000 that things changed. I was 35 years old and the mother of a 2 year old and 7 month old. I believed the increased frequency and increased severity of my headaches were related to lack of sleep of being a Mom until I had an episode where I could not speak. I had my 7 month old on the changing table and was preparing to change his diaper. I vividly recall trying to talk to him when I heard MY voice but the words were just odd sounds and made no sense. My heart started racing, I could not speak but I knew what I wanted to say. I felt trapped inside my body and a sense of pure panic. I calmed myself down thinking I must be a sleep deprived Mom but something deep down told me something was not right. I decided to tell my husband what happened that day. My husband worked in healthcare and knew I needed to be evaluated right away. I consider myself fortunate because without his insistence I might have convinced myself I was just an exhausted Mom. My Internal Medicine Doctor was calm and immediately ordered an MRI to rule out a tumor. I remember going for the MRI, laying down with my head placed in the little helmet cage sliding into the machine tunnel thinking there is just no way anything can be but normal. A few hours later my husband called to tell me his colleague reviewed the MRI and there was a small mass. I was filled with a fear that I had never experienced. I was determined to be fully involved in my patient care. At the Neurologist appointment I was told to stay in the exam room in my gown. I could hear my doctor talking to his colleague and my husband (another physician) in the hall about me. I actually walked out into the hall in my gown and asked to listen to their discussion about my case. I remember feeling that it was my body and I deserved to be privy to their discussion about my brain. We were in a small community and I ended up being referred to a Major Hospital where I was seen by a world renowned Neurosurgeon. I was incredibly nervous but was reassured that this was his speciality, caring for patients with cavernous hemangiomas. I felt a sense of being in good hands as he seemed well versed on this and his Nurse was so organized in talking to me about preparing for the surgery. On March 15th 2000 I taped a picture of my 2 baby boys to my thigh in preparation for brain surgery. I wanted everyone in the Operating Room to know I needed to be okay because I had 2 beautiful boys to raise. It was the scariest day of my life. I feared coming out of surgery not being able to talk or communicate but knew that I needed to have the cavernous hemangioma removed to eliminate the possibility of a lethal rebleed. The Neurosurgeon explained that my specific type was in an area he felt confident to remove and the MRI showed rings/shadows that indicated it bled several times and would likely continue to bleed again. After surgery I was told I was lucky as it had stained the subarachnoid area. I remember the surgeon describing it as a fragile piece of popcorn ready to burst. I felt very lucky to have had it removed and now understood that my painful headaches were actually subarachnoid bleeds where the cavernous hemangioma was leaking into the subarachnoid space. After the surgery I felt (for a few weeks) like I had been at sea on a boat where I felt a bit wobbly walking. Since the surgery my memory is not as sharp, where I feel a tiny bit slower recalling things and use lots of tricks to remember things (like a detailed calendar). I still battle headaches and take medicine for migraines but feel so fortunate to have been given this second lease on life. I celebrate the anniversary of my brain surgery March 15th as my birthday each year. My sons now wish me “Happy Brain Day” each year as they know from growing up we would celebrate by going to the beach since that is my happy place. I hope my story inspires others to be brave. |
