My Personal Stroke Story: Why an Aspirin Regimen is Right for Me
By Deanna Zuber, U.S. Consumer Health Field Sales, Rite Aid Team, Bayer U.S.
“Ms. Zuber, I am confirming you have Moyamoya Disease. The blood flow on the right side of your brain is severely blocked. You need to make an appointment with a Neurosurgeon as soon as possible to discuss plans for surgical treatment. Revascularization of the brain is the only solution to delay the progression and prevent life threatening neurological risks.” — Saint Barnabas Health, Livingston, NJ
These were the crushing words I heard after a cerebral angiogram revealed my shocking diagnosis of Moyamoya disease. I was numb, terrified and in complete disbelief.
When it comes to our health, it’s easy to make excuses and self diagnose symptoms amidst busy lives and priorities. We say things like: “Something doesn’t feel right,” “I need to get that checked,” “I’m too busy,” ‘I didn’t drink enough water.” Sound familiar? That was me. It is inevitable that health emergencies will happen when we least expect it. Trust the gift of a warning — it could save your life.
Over the past three years, I experienced occasional dizziness and loss of balance. Like most of us, I brushed it off. When my symptoms grew worse over the summer of 2018, I underwent several tests to rule out insulin resistance, thyroid disease, vertigo, etc. All of my results were healthy and normal. My next step was to consult a neurologist but I put it off…AGAIN. I felt ‘fine.’ However, when I started forgetting names and words, I knew something was very wrong. This was not typical brain fog. I was seriously struggling and experiencing what is called aphasia, a loss of ability to understand or express speech. In addition to aphasia, an abrupt headache caused short term blurred vision in my right eye and swelling on the left side of my face and neck. My jaw was in a lot of pain. On Tuesday, September 11, 2018, I was worried I was developing a serious tooth infection and scheduled an emergency dental appointment. Once again, all tests were healthy and normal. Little did I know an ischemic stroke was brewing and about to strike two hours later while home alone in my kitchen.
The feeling of panic took over when I realized what was happening to me. I frantically searched for aspirin to buy time fearing it was a heart attack. My left hand felt tight and the numbness immediately spread across the entire upper left side of my body. My blood pressure was out of control and I could barely speak. I grabbed my phone and dialed 911.
It was a long five days in the hospital filled with numerous painful tests that revealed a very rare and serious condition. Luckily my stroke did not cause any neurological damage and feeling came back within 24 hours. However, my stroke was related to a confirmed diagnosis of moyamoya disease. My right internal carotid artery was severely blocked, or occluded, restricting healthy blood flow to the right side of my brain. One of the rarest forms of occlusive cerebrovascular disorders encountered in neurosurgery is moyamoya disease. Fragile blood vessels proliferate around a blocked artery in an attempt to bypass an occlusion. Their appearance on a cerebral angiogram resembles a “puff of smoke” or “moyamoya,” a term coined by a Japanese team who first described the disease. It can affect both children and adults usually with symptoms of TIAs, strokes, headaches and seizures. There is no cause or cure for this disease and surgery is aimed at bypassing the blockage with another artery to restore normal blood flow.
Determined to find answers and the best resources, I turned to my dear friend Dr. Rosa Coppolecchia, US/Global Medical Affairs Cardio Aspirin/Prevention at Bayer’s Consumer Health division. Dr. Rosa was instrumental in coaching me with the right questions and connecting me with best medical resources for my condition. Ironically, we aligned on the same world-renowned neurosurgeon, Dr. Gary Steinberg of Stanford Health in Palo Alto, CA who specializes in moyamoya. Dr. Steinberg quickly reviewed my films and immediately knew my condition was emergent and accepted me as a patient to perform an Intracranial and Extracranial Bypass (EC/IC). The surgery would require taking a scalp artery and bypassing it directing into an artery to revascularize the right side of my brain. It would also include suturing a piece of the same artery onto my brain to generate a new blood supply. All of which would be delicately stitched with needle and thread thinner than an eye lash. The Stanford Moyamoya Center offers a highly experienced Moyamoya Team who see several new moyamoya patients each week, making Stanford the largest moyamoya referral center in the world. I was in the best hands and, for the first time, I felt hope and relief.
Once I had a plan, I was on a mission and immediately got my legal matters in order and prepared myself physically, mentally, emotionally and spiritually. Although the prognosis of surgery is very positive and highly successful, it was difficult to face and consent to the risks associated. November 13, 2018 was my scheduled surgery date in California. I was ready to fight and FOUGHT HARD during the 8 hour surgery. As promised, I wore my son’s Spiderman glove for ‘superpower strength.’ I’ll be honest, I needed it. Recovery was rough because it included a lot of nausea, bruising, swelling and neurological side effects of hallucinations, loss of speech and inability to chew due to severed muscle in my jaw and bone flap to my skull. But, time heals everything and, little by little, I got through it and with a little bit of grace and a whole lot of faith, I DID IT!
Three months later, I returned to work on February 11, 2019. I am happy to report that I am fully recovered, active and living a very normal life. All of my pre-surgery symptoms are gone. Headaches continue and my incision is still tender but that is to be expected as it could take a full year to heal. I return to California this summer for extensive post-op testing to review results of my surgery and to monitor the progression of the disease. Luckily I caught the disease at a very early stage. As prescribed by my doctor for secondary prevention of another cardiovascular event, I take a daily 81mg aspirin. What are the chances that the #1 drug to help treat me is aspirin, manufactured by my employer Bayer? I am beyond blessed for the family, friends, colleagues and medical professionals placed in my path.
In support of World Moyamoya Day on May 6, I’m honored to raise awareness of this rare progressive cerebrovascular disease and share my personal story with others. On behalf of my 18+ years as a proud Bayer employee, I would like to personally thank and acknowledge so many colleagues across the country who helped support me on this journey. I am forever humble and grateful for your kindness.
“…with a little bit of grace and a whole lot of faith there is hope in overcoming anything! Hey, moyamoya…BRING IT!”
Aspirin is not appropriate for everyone, so be sure to talk to your doctor before you begin an aspirin regimen.
