Tiny background for this story. In May 2018 I moved from the town I had lived in my entire life and went 1,300 miles to the east coast. I wanted a change and I had friends there. I don't want to get into the move or the time I spent there now. Jump forward to the end of June 2019, one year later, when I was going to bed it felt like I couldn't see, my eyes wouldn't focus at all. I went to the bathroom mirror and I tried washing them out. As I was walking back to my bed, the room started spinning like crazy and my entire left side was tingling. I told by boyfriend, "I think something is wrong", but I was still walking, talking, using my extremities, so I didn't think stroke. He immediately loaded me in the car and took me to the ER. I don't remember much, but the nurses kept giving me stroke exams and I passed every time, but my symptoms were kind of stroke like, so they did a CAT scan. Sure enough I had a brain bleed and they immediately put me in Intensive Care were I spent the next five days. Now, I really don't remember much, but my boyfriend said I crashed at one point and the staff scared him so bad he called the Chaplin to come in.
"my whole world was spinning, literally!"
After those five days, I was moved to the regular hospital floor. My left side was numb and tingling, but I was able to control most movements. I had to use a walker due to the dizziness, my whole world was spinning, literally! The other major problem was my memory. I still don't completely understand the things I do and don't remember, it's short term memory loss though. I had no idea what happened to me or why it happened, who has a stroke at 46? Well, the seventh day in the hospital, the Neurologist finally came to me to explain. He said I was born with an entanglement of blood vessels on my brain stem and one of those blood vessels burst causing the brain bleed. The reason it burst was due to my blood pressure being elevated at the time of the stroke, BUT, if I didn't have that entanglement the bleed wouldn't have happened. Interesting, but I still didn't understand all that. I asked him if he'd take me as a patient, unfortunately he was retired from his practice and referred me to someone else.
"Thank the Lord I was home though."
So, as you can probably imagine, I needed help and my family and friends were 1,300 miles away. I tried to stay there and do my thing but I was drowning. The job I had didn't last long, my boss didn't have the patience needed to let my slow functioning brain work. He let me go with a "this isn't a good fit". Soon after I took that 1,300 mile journey home. That was January 2020, we all know what happened a couple months later, Covid-19! I can say, Thank the Lord I was home though. I have seen two different Neurologists in two different states but I didn't know what to ask, say or do and I didn't understand fully what happened. I just went in to my appointments with a smile on my face, passed the stroke exams every time (just like in the hospital), even if they did tell me something I didn't remember later. EXCEPT, the first one told me I had signs of "a couple of" mini strokes on my CT. I guess it happened without me knowing? I had a lot of questions so, I took it upon myself to do the research.
This is my research from the little bit of information the Neurologist in the hospital gave me. A stroke occurs when the supply of blood in the brain becomes compromised and there are two kinds of stroke.
Ischemic Stroke - a blood clot obstructing an artery and stopping blood flow to an area of the brain.
Hemorrhagic Stroke - a blood vessel in the brain bursting and leading to bleeding inside the brain. There are five kinds of blood vessels.
Artery - blood vessel carrying, in most cases, oxygen rich blood away from the heart.
Arterioles - a small branch of an artery leading into capillaries.
Veins - blood vessels carrying, in most cases, oxygen depleted blood towards the heart.
Venules - very small vein, especially one collecting blood from the capillaries.
Capillaries - any of the fine branching blood vessels that form a network between the arterioles and venules.
I know it was a Hemorrhagic Stroke due to a capillary that burst. But why did this happen? Well, I found out I have a vascular malformation which is defined as 'a localized collection of blood vessels that are abnormal in structure or number. Not cancerous, it is congenital and usually asymptomatic'. My particular malformation is Capillary Telangiectasia or CTS. Ugh! That's a mouth full, lol! This link describes CTS as 'a cluster of dilated capillaries that form in some area of the brain, interspersed with normal brain tissue. It can be found on the pons, cerebellum or spinal cord'. Now the original Dr said it was my brain stem and the brain stem consists of mid-brain, pons, and medulla. I'm thinking the pons is the common denominator. I had finally arrived to the Pontine Stroke and I was curious of the symptoms and how they compared to mine. The website I got this information from is linked to Pontine Stroke.
Balance difficulty ~ Yes
Spinning sensation ~ Yes
Dizziness ~ Yes
Double vision ~ Yes
Loss of coordination ~ Yes
Swallowing difficulty ~ Yes @ times
Difficulty articulating words ~ Yes
Numbness ~ Yes
Loss of sensation ~ Yes
Weakness in 1/2 of body ~ Yes
Nausea ~ No
Extra: 'A person with a brain stem stroke may have vertigo, dizziness, and severe imbalance without the hallmark of most strokes.' May explain why I passed every single stroke exam! And on the above list I have 10 out of 11 symptoms! I go to the Neurologist tomorrow, I know what to ask, and the Dr can confirm or deny. I will let you know. God Bless!
**UPDATE! Went to my Neurologists appointment yesterday. I had a list of problems I wanted to talk to him about and it was important to me. When he came in the exam room, I pulled out my paper to start discussing, I was having difficulty getting my words out about what I wanted to discuss (dyspraxia), my mind literally gets all fuzzy. Now, he is a very friendly man, he elbow bumped me, smiled continuously, talked calmly, but after I talked for about one minute on one subject he, still smiling, started talking over me, doing the normal, generic, stroke exam while I was still talking, then told me "I'll watch you walk out". At the time, I couldn't process it, but now that I have, I am furious! My entire life is a horrific mess due to this stroke and the Neurologists gives me 5 minutes every six months.
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