On July 5th I had 3 strokes, caused by a spontaneous vertebral artery dissection (VAD). In the middle of the day at work I was getting up to go talk to my manager and I got lightheaded and dizzy, I didn’t think much of it as this happens from time to time. By the time I got the 20 steps from my desk to his office I knew something was wrong. I was having trouble remembering, I had right sided weakness and trembling, my vision was blurry and parts of it were completely dark, I was hot as if I was having a hot flash, my breathing was shallow, my neck was tight and hurt to move, and my head was hurting as if I had just been hit with a sledge hammer. I told my manager I needed to go to the hospital, he offered to call an ambulance, and looking back I should have said yes. Instead I called a friend who was able to get to me pretty quick and take me to the ER. At my previous ER trip on July 2nd they did an X-ray of my neck and told me I had a pinched nerve. Despite my wife and I both asking for a CT or MRI just to be sure something else wasn’t going on, they declined. When I came back July 5th, (with all the textbook symptoms of a stroke) the doctor reevaluated the previous X-ray and said, “pinched nerves can get worse before they get better.” Due to all the new symptoms we again asked for a CT or MRI and were declined. This doctor sent me home with the same instructions as the previous doctor; if you have any new or worsening symptoms come back.
On July 9th we went back to the ER because again my symptoms worsened. – From the first set of stokes on July 5th I had no vision in my right eye and only tunnel in the left. – The doctor this time was very thorough, she did a CT and MRI and found the initial three (3) strokes. I was admitted to the neurology ward and kept for about 48 hours; I was put on Plavix and Aspirin, both of which are anticoagulants. These are the first go to drugs for people who’ve had strokes. I was discharged with a walker, instructions to follow up with an outpatient neurologist, and not to return to work until I was seen.
I spent much of the next week sleeping. On the 15th my symptoms worsened again, the weakness and trembling on the right side started, I had a slight slur in speech (new at this point), the pain and tightness in my neck increased, and I was struggling to walk. On to the ER again. By the time we got there my symptoms escalated to the point I could hardly walk even with the walker. They redid the scans and found 10 more strokes, 13 total; I had one on each side of the occipital lobe, 2 in the frontal lobe, one 90% the size of my thalamus, a couple in the midbrain and the rest scattered throughout. The anticoagulants weren’t working. This time I spent about 5 days in the Intermediate Care Unit (IMC), I was on a Heparin drip (intense blood thinner) for about 36 hours. Once the Heparin drip was in a therapeutic range they transitioned me off that and on to an oral blood thinner of similar strength, which I am still on today.
I had a few hospital stays after this, one of which the neurologist thought I was crazy and ordered a psych eval. The psychologist was really understanding and very much thought the neurologist was overreacting. This same neurologist then ordered an opthamologist eval because she thought I was exaggerating about my vision loss and was convinced there was something else going on. The ophthalmologists eval said that my eyes and optic nerves were completely fine, and confirmed the vision loss is in fact stroke related. The outpatient Neuro-Opthamologist also said that the vision loss is stroke related.
I have seen 3 different outpatient neurologists one who was a vascular neurologist, one a general neurologist, and the other a migraine neurologist. The first 2 said that my vision is not explained by the strokes, even though it didn’t start until the stokes happened and changed again as I had the other strokes. The migraine neurologist however, said that from what she sees on the scans and the radiologist notes the vision loss is stroke related and she is referring me to a stroke neurologist. I’ve also seen a hematologist, she confirmed I will be on the blood thinners for life as well as the cholesterol medication (this is more as a precaution/prevention). The hematologist is running a whole group of tests, which I don’t have the results from as of yet.
With all of the facts out of the way…I am exhausted, emotionally and physically. I am fearful and angry and confused, but mostly angry. What does one do with anger, especially with physical limitations? For my whole life I’ve trained myself as a form of protection; to turn anger inward and make it my fault, my failure, my [fill in the blank]. If something is my fault I can do something about it. This is not working any longer; I realized this when my wife told me that she is worried about me. About the mental space I’ve been in, about how I apologize for things I don’t need to be sorry for. She said I am headed down a dark and dangerous road, and she is right. She is so right, and the appreciation I have for her and her love for me. Enough to say these things. Enough to worry and be concerned. Her heart for wanting me to get better, not worse. I realized I have been self-shaming and self-loathing because of something I couldn’t control. I talk about the people in some of the Facebook groups I’m in and how bitter they are, yet that is the road I started to walk down. The thing is, that is not who I want to be. I’ve talked about how I don’t want to be this person, that I don’t know who I am, that I don’t like the new me. However as my wife said, I am becoming a self fulfilling prophecy. In reality, I have to come to terms with it before it ruins me. My marriage. My family. These strokes and health issues are out of my control, but I am in control of how I handle it. I am in control of how I use this unfortunate reality. I am in control of how I move forward from this. I don’t know what taking control, moving forward, and coming to terms with this looks like…but I am up for it. I will climb out of this rut as I have with others before. It takes concentration, tenacity, and perseverance; it takes an unwavering soul. But I am resilient. I am tenacious. I will find the way.