After waiting two and a half months post-stroke to see a neurologist, I finally had my appointment today. The neurologist is very experienced. He was a fellow (can’t remember the university) and also a professor at Oregon Health and Sciences University. I felt at ease with him and trusted his expertise.
At the time of my stroke, it was noted that it was likely from Reversible cerebral vasoconstriction syndrome (RCVS). The Cleveland Clinic describes it, “a rare condition that occurs as the result of a sudden constriction (tightening) of the vessels that supply blood to the brain. The main symptom of RCVS is sudden, severe, and disabling headaches that are sometimes called “thunderclap” headaches.” This is what I had and what sent me to the ER in an ambulance. Unrelenting, sudden intense pain in my head. Since I continue to get headaches and some of them are far more intense such as the one on Saturday, he is having me repeat an MRI (with specific neurological sequences) and CT scan. He’s looking for anything that could have been missed, such as an aneurysm (lab work can come back fine even if there was one), evidence of RCVS, and anything else that could explain why it occurred in the first place.
I have a history of migraines, but they’ve increased frequency and intensity only within the last 6 or 7 years. My previous MRI done in 2016 when I had several showed some little irregularities (for lack of a better term), but nothing alarming. He explained that it could be evidence of my migraines or it could be TIA’s (mini-strokes).
Sometimes as the blood is reabsorbed back into the brain, remnants can be left behind on the brain. They don’t yet know what the impacts on the brain are. He referred to superficial siderosis. You can read about it here but it’s described as, “Superficial siderosis is a potentially devastating syndrome usually caused by recurrent subarachnoid hemorrhage with an accumulation of hemosiderin and other iron-containing pigments in the leptomeninges, brain surface, brainstem, cerebellum, cranial nerves, and spinal cord. Superficial siderosis can mimic many other central nervous system degenerative or multifocal disorders, including amyotrophic lateral sclerosis and multiple sclerosis.”
He repeated the neurological tests I had daily in the hospital. My left side is still weaker and focusing is a struggle. I’ll have my peripheral vision checked, scans done of my retinas and a hearing exam as well because all of this was affected by my stroke.
As far as timing goes with regard to my fatigue, brain fog, memory loss, etc.- it’s just going to take time. I’m still only 2.5 months out from the event so it’s early. I’ll begin physical therapy on Tuesday, and they will evaluate what else it is that I need. I’ll see him in a month when he has all of my labs, scan / MRI results, and previous scans of my brain from when I was admitted. He wants the whole picture and to be very thorough given my age. So, for now, I continue doing what I’m doing; staying busy but resting and listening to my body. Should everything come back normal, I will be at no more of a risk for a stroke than anyone else. They may not get any definitive answer as to why I had one but I’m relieved he’s having me do all this for peace of mind. It’s scary knowing this happened and but not why. At least ruling everything else out gives me some relief. Stay tuned.
