So how the hell did this all happen? People constantly tell me that Covid doesn’t cause hemorrhaging\pontine strokes...
Yes, well thank you for that.
I made it all up.
In the hospital no one had a clue what happened. My brain was full of blood, and it was a wait and see game. They blamed it on everything...
I was on some kind of designer drugs...but then I tested negative for all drugs.
Must be my blood pressure...4 years ago I was prescribed the lowest dose BP meds you could get. Hadn’t taken those for two years (I had started CrossFit and lost weight) but in the emergency room my BP was like 200/100 some crazy number
Oh goodness it’s also his blood sugar...he’s clearly diabetic his blood sugar is over 400.
I was hooked up to every machine possible, had every chemical injection you can think of. Just to get stabilized. Then off to rehab, cause of stroke unknown. But, first day of rehab I couldn’t even function hardly...they had to start rehab in my bed, because as soon as I sat up my blood pressure hit the floor, and basically do did I.
The flight attendant(my Doctor) asked me what BP meds was I on at home.
And that’s where it all started. If you aren’t on Anything at home then why you on like every Blood pressure med available?
So in rehab they took me off all the meds, and put me back on the super lose doses. Same with the blood sugar meds. Yanked me off all of those. I felt better, way better.
That’s when they started talking about an allergic reaction to something. No one had a clue what happened to me. No one ever figured it out. I was just there, and had the weirdest stroke ever - a pontine stroke that affected apparently the center of my body, and miscellaneous limbs(right side of my face, left arm, right leg, somewhat my left ankle). I was a mess. They did more scans-but my head was still full of blood. So, they scheduled me for a scan in April.
Carried on with therapy. Came home, still no clue.
In April I had a follow up scan. Still very hazy, but they could see several infractions in addition to the hemorrhage?!? And there was a dark cloud area in my pontine they wanted to see if it improved over the next month. Rescheduled for a month later and they ordered Covid antibody testing.
I got the antibody testing right away. That came back positive for antibodies.
In May they can clearly see that I had twelve infarctions, all over my brain-that explains the left arm, right leg, ears, and eye thing(my right eye is totally paralyzed, my hearing in the left ear is way off) and they see a ‘cavernous malformation’ in my brain directly in my pontine.
Cerebral cavernous malformations (CCMs) are abnormally formed blood vessels. As opposed to other kinds of hemangiomas, CCM vessels, which have the appearance of a small mulberry, develop and create problems in the brain or spinal cord. These malformations, which can vary in size from 2 millimeters to several centimeters in diameter, may be hereditary but most often occur on their own.
CCMs may leak blood, leading to bleeding in the brain or spinal cord (hemorrhage). Brain or spinal hemorrhages can generate a wide range of more apparent neurological symptoms, depending on the location of a cavernous malformation in a person's nervous system.
Cerebral cavernous malformations (CCMs) may exist without apparent symptoms. Obvious symptoms tend to occur when recurrent episodes of bleeding or blood clot formation lead either to seizures, for upper lobe CCMs, or to focal or vision issues, for CCMs in the brainstem, basal ganglia and spinal cord.
Generally, signs and symptoms of CCMs may include weakness, numbness, difficulty speaking, difficulty understanding others, unsteadiness, vision changes or severe headache. Seizures also can occur, and neurological issues can progressively worsen over time with recurrent bleeding (hemorrhage). Repeat bleeding can occur soon after an initial bleed or much later, or a repeat bleed may never occur.
-as defined by the Mayo Clinic
So my CCM is directly in the center of my pontine. But First Covid.
When I was in the hospital everyone had to suit up to see me, masks, gloves, basically biohazard suits. All because of something they said I had the ‘Rhino Virus’ no one ever understood why the hell all the precautions because...this is the definition of the rhinovirus...
The rhinovirus is the most common viral infectious agent in humans and is the predominant cause of the common cold. Rhinovirus infection proliferates in temperatures of 33–35 °C, the temperatures found in the nose. Rhinoviruses belong to the genus Enterovirus in the family Picornaviridae. Wikipedia
So, because of the common cold everyone was suited up? A common cold shut my body down and required me to be ventilated and eventually require a tracheotomy. A common cold caused me to have a severe sinus infection, and viral pneumonia - neither of which I had any clue that I had.
My neurosurgeon said that it looks like my CCM is one that regularly hemorrhages slightly, and then reabsorbs the hemorrhage (don’t ask me how she know that - but she has about 5 thousand photos of my brain)...her theory is.....
I had this viral pneumonia, massive sinus infection, and of course a fever. Add on top of all of that - my blood started to thicken (the only way she knows that is the blood matter that stayed in my brain from January-May) so my blood thickened, and that caused the 12 infarctions (they all happened at once from what they can tell) those infarctions caused my body to go into total chaos. -blood pressure skyrocketing, -blood sugar went way out of line, basically everything that could go wrong did. Nothing at all against Trident(I’m so thankful for them being where they are - the ambulance was able to get me there on time)when they read my MRI all they could see was one massive pontine hemorrhage - and because of the massive explosion in my head it covered up everything else that had gone wrong.
No one ever really figured out what happened while I was in the hospital, roper figured out I didn’t need to be medicated to hell and back. Roper got me to moving again. Roper gave me hope...to me it’s like roper worked miracles. But, it wasn’t until I transferred to the MUSC stroke center everything was figured out.
Still, I wouldn’t go anywhere but the stroke rehab center on the 3rd floor of roper. Sure...Katie’s loud, Angie’s mean, and Liz talks a lot...but that place changed my whole outlook-I stopped feeling like a burden there.
MUSC just wow...they’ve rewired my face, strapped it up, and figured out what the hell went wrong with me.
so, that’s why I’m so paranoid about Covid. It’s a scary damn thing. So unpredictable...you can barely be affected, or all hell can break loose.
Now, just to make sure this CCM stays under control.