PATIENT VOICES
Life After Vertebral Artery Dissection and a Stroke

Was this helpful?
59
Health Club and Aerobics Gym
Getty

At a gym down the street from our home, my husband and I had only five minutes left in our high-intensity workout when it all went downhill. While doing CrossFit, I heard and felt a pop in my head. Everything went blurry. The worst headache of my life set in, and my speech started to slur. My husband insisted we immediately head to the ER at Aurora St. Luke’s Medical Center.

After hours of waiting in a neck brace and wheelchair, I was called in for a CT scan. Soon after evaluating the results, the stroke team came and explained I would be admitted into the neurological intensive care unit. Everything they explained at that moment was completely foreign to my husband and me, so we just trusted the doctors. An angiogram procedure the next day allowed the doctors to visualize the blood flow through the main arteries leading into my brain. The scan confirmed what they’d seen on the CT: I had experienced a vertebral artery dissection (VAD).

My family and I were completely unfamiliar with my diagnosis, and I’ve since learned many doctors don’t know much about VAD either. As the neurologists explained it, a flap-like tear had split the inner lining of a major artery in my neck. Their main concern, as a result, was that I could suffer a stroke. Blood pooling around the tear could easily form a clot, which could then travel the short distance from the vertebral artery to my brain.

The team immediately put me on an IV blood thinner to prevent such clots, and assured me the tear would heal on its own in time. After six days at St. Luke’s, I was discharged with the blood thinner, a prescription for pain management, and strict instructions to rest and return weekly for follow-ups. I was unable to return to work for three months.

Finding Support, the Right Doctor, and Some Validation

The months following that fateful workout session were a blur. I continued to see my ER neurosurgeon, and a follow-up CT angiogram at six weeks confirmed my VAD had healed. But even with that good news, brutal headaches, nausea, and bouts of vertigo continued to plague me. All along, this neurosurgeon’s focus had been on stroke prevention and healing my artery, not symptom management. With the VAD repaired, the question of why my symptoms persisted went unanswered.

Fortunately, I had great advocates in my husband and mom, and we eventually got the answers we needed. In that first week at the hospital we found a support group through social media that connected me with hundreds of people who’ve experienced VAD. I’ve learned more from the people on that site than from any doctor. Offering everything from emotional support to provider recommendations, the online group has helped tremendously.

Then, through a friend, my mom received a referral for me to see Dr. Brian-Fred Fitzsimmons, a neurologist at Froedtert Hospital. After my research showed he was extremely well rated, we scheduled an appointment with him in August of 2012—four months after the VAD.

Because of my persistent symptoms and the research I’d done, I had been suspecting for months that I’d actually suffered a stroke that day at the gym. After explaining my story to Dr. Fitzsimmons, he evaluated me, looking for signs to confirm or deny my suspicions. When he then told me he was almost certain I’d had a stroke, I started crying. I wasn’t upset by the diagnosis, but happy to finally feel validated.

Dr. Fitzsimmons also helped me get my vertigo under control, referring me to a vestibular physical therapist. And after two years under his neurological care, the main ongoing issue I was left with was migraines. So Dr. Fitzsimmons referred me to another neurologist specializing in headaches. I’m still grateful for the progress I made under his care.

A Newborn and a New Normal

In 2014 I turned 34 and my husband and I were eager to start a family. My new neurologist wanted me to stay on an anti-inflammatory headache medication during pregnancy, while my obstetrician and I felt differently. So I was back on the market, looking around for another specialist. The search brought me back to St. Luke’s and under the care of Dr. Elizabeth Marriott.

In tune with our desire to start a family, Dr. Marriott slowly weaned me off my medications until I was only taking a baby aspirin each day. In exchange, she started me on a few supplements that actually left me feeling better than I’d ever felt on the medications. And in December of 2014, she gave me the all-clear to get pregnant. In 2016, our newborn son made us a family.

My life isn’t the same as it was before this whole experience. I still suffer frequent headaches, but my regimen of acupuncture, supplements, baby aspirin, and a pain reliever as needed, has helped me regain stability. I’ve also taken steps to cut back on my workload and avoid noise and bright lights that can still trigger vertigo. But the most important lesson I’ve learned is you can find and adjust to a new normal. I credit Dr. Marriott for setting me out on the right path.

Patient Advocacy Starts With You

The most stressful part of this ordeal was feeling like my new full-time job was figuring everything out. My husband and mom have been my two biggest supporters. They advocate for me and understand that my daily life is still affected by that VAD and stroke. But you truly have to advocate for yourself, because nobody knows exactly how you feel.

If you’ve had a VAD, I recommend joining a support group or asking around until you find a doctor who knows about VAD—one who understands the many ways it can affect your life. People don’t often talk about the mental and emotional burdens of illness, but suffering a stroke is a traumatic life-changing event. I waited longer than I should have before seeing a psychologist who ended up diagnosing me with PTSD. Don’t be ashamed to talk to a therapist. Without my husband’s encouragement to do so, and some courage of my own, I never would have worked through all the emotional stages.

Put in the work and connect with others, and you can get all the professional help you need to find your new normal and reach a place of emotional acceptance.

Was this helpful?
59
THIS CONTENT DOES NOT PROVIDE MEDICAL ADVICE. This content is provided for informational purposes and reflects the opinions of the author. It is not a substitute for professional medical advice, diagnosis or treatment. Always seek the advice of a qualified healthcare professional regarding your health. If you think you may have a medical emergency, contact your doctor immediately or call 911.