Ticking Time Bomb: Moyamoya Disease

A ticking time bomb. What if it were in your brain? And it could explode at any moment? Unbeknownst to you. Sounds like an intense TV drama, doesn’t it? While those shows mimic real life, this WAS real life for Kit*. * Her real name is used with permission.

Ticking Time Bomb

Shock and relief filled Kit when she learned about her Moymoya diagnosis at age 27. That ticking time bomb in her brain, a congenital birth defect, finally explained her academic struggles and YEARS of debilitating migraines. Thankfully it hadn’t exploded yet. But, time was of the essence in detonating that ticking time bomb in her brain.

Debilitating Migraines

Kit’s early years were filled with gymnastics practices and meets. Her passionate pursuit of the sport came to an abrupt end when debilitating migraines knocked her out for two to three days a week while she was in high school. Nausea, sensitivity to light and sound, intense pain – all these made completing her missed school work impossible. Her grades began to suffer. Kit’s pediatrician put her on birth control at age 16, citing her frequent headaches as hormonal migraines since she was still going through puberty. An anti-depressant was prescribed when she was 17 to control the migraines. Later that same year, she met the criteria for ADD and was put on Adderall. “I was a mess,” Kit remembers. “All those medicines only made my migraines more intense. I felt awful.”

Considerable Difficulty Learning

Not only was it the frequency of the unrelenting migraines, but it was also Kit’s considerable difficulty learning and retaining information during her high school years that caused great tension between Kit and her parents. “I didn’t know how to express I needed help with my classes. I was relieved when I was given the opportunity to finish my senior year through a home school hybrid.” After graduation, Kit secured an apprenticeship at a hair salon. A year into getting her cosmetology license, frequent migraines caused her to miss work and school. She questioned whether she was overdoing it. A few years later, the intensity and duration of her migraines worried her to the point that she met with a neurologist who ordered at CAT scan of her neck and brain. After reviewing her films, he said, “You’re perfectly fine.” Kit didn’t feel fine. Because of having to miss work so frequently to deal with the migraines, she finally left the salon. “I told my boss I needed to figure out the weird health stuff I had going on.”

Unexplained Health Struggles

Kit “salon-hopped” while trying to find the salon that was right for her and her unexplained health struggles. “I was too nervous to tell them I suffered from frequent migraines.” It was during this time that Kit began having transient ischemic attacks (TIA’s) or mini-strokes. “When an episode occurred, I would be confused, have blurred vision, couldn’t form complete sentences, my ears would ring, everything would move in slow motion, everything hurt – including my hair and teeth, and I had severe nausea/vomiting. When I had those symptoms, I felt like I was in a dream. I could feel the pain in my head, but I couldn’t grasp what was going on around me.” She didn’t learn these episodes were TIA’s until several years later. The ticking time bomb was intensifying – first migraines, now TIA’s. And no one is noticing but Kit.

Not Like Everyone Else

“Kyle and I started dating in 2010. In the beginning of our relationship, he didn’t understand about the severity of my headaches. It definitely caused rough patches for us. I often would get embarrassed when I had to miss so much work, because Kyle has an amazing work ethic.” A full-time apprenticeship at at hair salon didn’t last but a year. Kit realized she couldn’t work full-time while dealing with her health issues. After a working part-time at a restaurant, Kit took a break from working altogether. “I was really embarrassed. It was hard for me to admit I couldn’t keep up. That I’m not like everyone else.”

Extremely Narrow Veins

After a few months, Kit was ready to try working part-time again. A few months into her job as a receptionist at a animal clinic, Kit noticed the left side of her neck was swollen. Under her jaw was a golf ball-sized lump. The next day during her lunch break, Kit noticed the lump again. When she started feeling “off,” she told her boss about it. The doctor at the urgent care wasn’t too concerned because the lump had gone down by the time she was seen. He referred her to an ENT doctor. “The ENT doctor thought it might be a salivary stone, but he ordered a CAT scan of my neck and brain when I told him about my years of migraine issues,” Kit shared. “The doctor called to say my scan showed I had extremely narrow veins in the left side of my neck.”

Hidden Ticking Time Bomb

When Kit picked up her records to take with her to the vascular surgeon, she read the words Moyamoya disease. “You have a rare, progressive brain disease,” were the vascular surgeon’s blunt words when meeting Kit for the first time. “I remember not feeling panic. I didn’t question why. I just wanted information about the disease and how to treat it.” Kyle was taken off guard as this wasn’t the news he was expecting. “We will get through this,” he promised. “I was in a dream state. This was the missing piece for all the struggles I’d endured. Everything made sense but no sense at all,” Kit shared. During the month it took to get an appointment with a neurosurgeon, that hidden ticking time bomb began ticking louder and louder as Kit now knew she needed treatment as soon as possible. (Imagine waiting a month for an appointment, knowing a devastating stroke is possible without treatment.)

Almost Like Christmas

When the first neurosurgeon dismissed her struggles as simple migraines, Kit was devastated. But she refused to give up. Two months later, a different neurosurgeon ordered an angiogram that confirmed her diagnosis. “It was almost like Christmas. I’d been waiting for this moment. Research told me brain surgery could stop or slow the progression of my disease and hopefully stop all those horrible migraines.”

Couldn’t Function

In September of 2016, her neurosurgeon moved a thriving blood vessel above her left ear to a part of her brain that wasn’t receiving blow flow. “The plan was to do a direct bypass on my brain, but the neurosurgeon decided during the surgery that my blood vessels were too unhealthy, so he chose to do an indirect bypass instead.” By the following January, Kit began experiencing debilitating migraines again. “Before my surgery I couldn’t function, and I didn’t want to admit I was in that place again.”

Rapidly Declining

By March, her neurosurgeon was concerned and ordered a CAT scan and angiogram. “Your surgery didn’t work. I don’t see any new blood flow,” he said. That ticking time bomb resurfaced. “I was rapidly declining with migraines and TIA’s every day. There was no time to wait to have another surgery.” Four months of calls with Dr. Steinberg’s office at Stanford resulted in Kit’s second brain surgery in September of 2017. This time a direct bypass surgery with the leading Moyamoya surgeon in the country.

Hardest Parts of Her Journey

At her six-month follow-up appointment in California, Dr. Steinberg deemed her surgery a success as good blood flow was evident. No more ticking time bomb. And that wasn’t the only thing to celebrate! Marrying the man who supported her and loved her during the hardest parts of her journey while they were in California made her wildest dreams come true! (Isn’t that the sweetest picture?) In June of this year, they found out they are expecting a baby!

Strength in Vulnerability

“I consider my two brain surgeries my biggest accomplishment. I am believing in myself in a different way now,” Kit shared. “Overcoming is empowering.” With all the struggles Kit has gone through, I asked her to share her advice for others who wait years to discover the root cause of their struggles. She said, “Be your biggest advocate. Follow your intuition until you to get to the bottom of it. Even if it means feeling embarrassed or vulnerable. There is strength in vulnerability.”

Leave a reply (below): “I believe fists up represents fighting for yourself, because you are worthy. Believing in yourself is a very powerful feeling. When the going gets tough, put your fists up and fight for yourself and what you want in life.” Those are Kit’s words. POWERFUL, aren’t they?

Do you put your “fists up” when the going gets tough? Do you fight to overcome your struggles? Do you fight for what you want in life?