Carotid Artery Dissection - Gretchen's Story

To continue my series on Carotid Artery Dissection, Gretchen has kindly offered to tell her story and I was really struck by the message of resilience. Read on to hear about how Gretchen had her dissections:

My name is Gretchen Myers. I live in Pittsburgh, Pennsylvania in the US. I am honored to have the opportunity to share my experience and contribute to raising awareness for Artery Dissections. A Carotid Artery Dissection is a tear in the carotid artery. This will essentially slow or completely stop blood flow through the artery. CAD’s can be caused by trauma to the neck, sports injury, certain types of exercise, chiropractic neck manipulation, excessive sneezing or coughing, or they can be spontaneous. Some people have health conditions that weaken artery walls and make them more susceptible to artery dissections. It is a very uncommon diagnosis. Many people are diagnosed with artery dissection after a stroke unfortunately. 

Here is my story: 

I have had two Carotid Artery Dissections, diagnosed one year apart- ages 38 and 39. I am very blessed that I never experienced a stroke. I am a speech pathologist and know about stroke damage. The day before Easter 2016, I suffered my first CAD in my left carotid artery during an intense Cross Fit workout. I will never forget it. It was the strangest, most confusing time of my life. Though I did not realize what was happening at the time, my initial symptoms were intense, painful migraine, dizziness, loss of peripheral vision, and an overall feeling of not being present in my own body. I was able to return home and slept for 3 hours. I continued on with my weekend activities and a full work-week with recurring symptoms, including constant fatigue and pain. I knew something was wrong and made an appointment with my PCP office mid-week. I was ordered medication for migraines but no imaging. I left that appointment in tears knowing that something was wrong even though I was told by the physician assistant that it was only a severe migraine. My symptoms did not improve, and by Friday, the pain was unbearable. Calls to my PCP office were unproductive. They continued to insist that my symptoms were due to an ongoing migraine. My husband and another family member in the medical field advocated for me to go directly to the Emergency Room. Imaging confirmed a left Carotid Artery Dissection and complete stenosis of the artery, meaning absolutely no blood flow to my brain in that carotid artery. That night, I was transported to one of the major hospitals in Pittsburgh and stayed for a week. 

The next year was filled with good days and bad days of feeling well and feeling sick, lots of medical appointments, extreme fatigue, stress, anxiety, and more questions than answers. Lights bothered me. Sounds bothered me. My left CAD healed after 6 months thankfully, but residual symptoms did not subside. I finally started feeling somewhat better and more like myself as time went on. I had a follow-up scan one year later in March 2017. That evening, I got a call from vascular neurologist saying that the scan revealed a dissection in my right carotid artery. It was shocking. I have no idea when it happened or what caused it. I will never know. I had no clear symptoms as I did with my left CAD. My neurologist said I may have damaged both carotid arteries at the same time one year prior. I ended up back in the hospital for 4 days. This time I felt smarter and more empowered to search for the right doctors. I knew by this time how little is known about CAD’s, especially in younger, otherwise healthy people. It is unusual to have one CAD, let alone two. I visited a doctor at the Cleveland Clinic who specializes in artery dissections. I went through genetic testing and other testing to rule-out underlying conditions. Nothing. Everything I was tested for was ruled-out. I do have exercise and activity restrictions now so that I can continue to do the things I love safely. I love to exercise and be active. As of my most recent scan in 2019, my right carotid artery has not healed. It is stable, which I am grateful for, but it has not healed at all. My doctors have expressed to me that if it has not healed after 2 years, it likely will never heal. I am on anti-coagulant medication for life, and I am okay with that. I’ll take it! I have some mild residual symptoms (most people with a history of artery dissections do because of nerve damage), but I feel healthy, strong, and have more energy than ever. I am able to be fully present and alive with my 2 daughters and husband, and I feel really good. I am one of the lucky ones. 

If you have stayed with me this long, thank you! I hesitated to write this post, because, mostly, I just do not like to bring attention to myself. I do not talk about it very much. But then I realized that I am not doing any good by staying silent and not sharing my story. I wanted to write this post to bring awareness to Carotid Artery Dissections, and invisible diseases in general, in which people suffer without visible symptoms. Carotid Artery Dissection is not widely known even in the medical community. I have had several friends or family members in the medical field look at me with a confused look on their face and say something like “You’re too young to have a dissection!” or “How could that happen at your age?”. I heard at one time that if a young person experiences a stroke, an artery dissection should always be considered. 

I have learned a lot after going through a serious health issue. I lost my dad after a 4-month-long battle with stage-4 lung cancer in 2016 as well. Hard times make you stronger. They help you realize what you are capable of. I have a greater appreciation of what matters in life. I appreciate the little things in life. I don’t know if I would have that appreciation if not going through hard things. I heard a quote that says “Positive people are not positive because they have skated through life. They are positive because they’ve been through hell and decided they don’t want to live there anymore.” I also learned to always, always advocate for yourself. If you know that something is not quite right with your body, listen to yourself and do not ignore the symptoms. You could save your life! 

For other Carotid Artery Dissection Stories See:

Linz's Story

Helen's Story

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  • Anonymous
    Anonymous 15 May 2023 at 21:03

    Thank you. I have had a right carotid artery dissection in March. Struggling at the moment. I can relate to the disconnect from family and friends almost not believing that this can happen and that it is even a real health issue...

    • Cliona Kelliher
      Cliona Kelliher 28 July 2023 at 16:17

      It's very difficult - I think because it is an invisible condition, it is very hard for people to understand the real impacts. And that lack of understanding can be really upsetting. I hope you are feeling a little better now.

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