Updated: Dec 6, 2019
T-minus 6 months. This was all the time I was given. When the clock hit zero I would finally know what permanent damage was done.
This was the time frame swirling around my head constantly. The normal treatment plan for the type of clot I had is 6 months on anticoagulation therapy. This would help to dissolve the clot and prevent further clotting in my body's fragile state. When clots are small, anticoagulation has the possibility to totally dissolve the clot. I was told in a couple of my first follow ups that this would never be in the cards for me. The clot was too big. The hope my team had was that enough of the clot would dissolve to restore some blood flow. Either that or my body would re-route blood flow through other channels to compensate. During this 6 months, not only would my body attempt to rectify the issue of blood flow through my right cerebral venous sinus but it would also work on preventing the clot from causing trouble again. It would start to wall it off, a process called epithelialization. The wall would protect the clot from the pressure of blood flowing around it and preventing pieces of the clot from breaking off and causing havoc in another part of my body. After 6 months, whatever change was going to happen to the clot would have happened by then. It would not continue to improve after 6 months, it would be stable in whatever state it was in at the 6 month mark. The nurse practitioner side of me understood all of these, how the body would try and find a new homeostasis. But the 26 year old side of me heard one thing: " I'M A TICKING TIME BOMB."
Not only would I be left with a clot in my neck ready to cause devastation at any moment. There was the issue that my initial MRV showed significant compression on my jugular vein where the clot was. I was told after waking up in the hospital that it appeared I had a structural abnormality. I had bone compressing my jugular vein, making it narrow. The perfect place for a clot to get stuck. This combined with a permanent clot would put me at significant risk for reoccurrence. I sobbed in the doctor's office when I realized I would spend the rest of my life teetering on the edge of death. I felt the Grim Reaper laughing at me. I had narrowly avoided his grasp once, but he wouldn't let me get away that easy. I lived in a constant state of fear for 6 months.
July I had my second and final MRV scheduled. The end of my treatment time had arrived. Now I would finally get the final word on my fate. Would future surgeries be in my future? If the compression on my jugular vein was too severe, I would need a high risk surgery to try and shave the bone down and release the pressure. How much blood flow had been restored in 6 months? I had improved significantly in my functional ability. But now I had hit my limit of possible improvements. I should have been happy to have reached this milestone. I would no longer need full strength anticoagulation. My body would have walled off whatever clot was left so my chances of it breaking apart and causing clots in the rest of my body was significantly lower. But sometimes, ignorance truly is bliss. Until the final MRV is done, there is always that unrealistic sense of hope but now I was facing my sentencing. Would it be death row or a life sentence without the possibility of parole?
I did not sleep the night before the MRV. I had to spend all my energy trying to force myself to breathe. I stared at the ceiling of my childhood room that night as the time ticked away. I would finally know how permanently broken I would be. And I felt guilt again. I should be thankful for being alive 6 months later. There was a high chance I would never reach this second MRV but yet here I was. I knew logically I was better in some sense, since I was walking and talking. "Stop being ungrateful Myra." My family accompanied me to radiology in the morning. They watched as my hand shook filling out consent forms. I could barely change out of my clothes into hospital gowns I shook so much. I needed my mom's help to take my necklace off because my fine motor skills had gone out the window. I spent the next hour trying to keep my vibrating body still as the MRI spun around me.
We went to neurology immediately after my scan. I sat in the waiting room feeling miserable while my mom and Matt took bets on whether the clot would be there or not. They both played on the team of optimism, believing that it would be gone. I grimly gave my "generous answer" of maybe only 60% of it will be left. Soon I found myself sitting in my neurologist's office watching her flip through the images on her computer screen. The next things I heard were not at all what I was prepared for.
N: "WOW! I don't see it. I can't see the clot."
Me: "I'm sorry what?"
N: "Wait, I don't see the compression either! The flow looks great!"
Me: "Bone doesn't just disappear."
N: "You've got a small area of brain tissue loss in the temporal lobe. Functionally you're doing amazing. My other patients who have had damage to their temporal lobe seem to do the best. We don't really know what the temporal lobe does honestly, and I guess you can live without it!."
Me: "I guess I had a stroke in the best place then."
My family cheered with the seemingly impossible news. My neurologist pulled me into a tight hug. Even these results were beyond her wildest dreams. Statistically, I should not have improved this much. All the research and studies say so. And yet, the official MRV read shows that I have only a tiny "filling defect" in the place where the clot was. My hematologist said that this can either be a small piece of clot left or scar tissue from the damage the clot caused in the vessel. There would never be a way to know definitely. I would not need dangerous surgeries. There was no compression putting me at risk. My neurologist consulted an expert on this rare compression who concluded it never existed. My initial scans couldn't be relied on to make that diagnosis because the clot was so big it had distorted my normal anatomy.
I walked out of the office numb. My mom looked at me with concern. "Myra, aren't you happy?!" I was happy, but also in shock. I released a breath I didn't realize I had been holding for 6 months. I could definitively say "it's over." I had officially recovered. The time bomb in my neck had successfully been diffused. Maybe, just maybe, I wasn't destined to die tragically young.