So, I’m writing this as a reflection of why we should persevere and believe ourselves before our doctors or supposed medical superiors.
My stroke story started on the 10th of January 2022 at about 6.30pm, alone at home I suffered a clot on the RHS of my brain just above my ear, I phoned for an ambulance but was told one would not come for at least six hours, I was asked if I could make my own way to the hospital, I said yes, and went to sleep for 14 hours.
Since that moment I have suffered with what were diagnosed as, but did not match,“focal aware seizures”, in what I described as “episodes” my body and brain has since been exposed to a relentless bombardment of stroke like symptoms cascading over hours, sometimes days. My episodes were daily for the first five or six months post Jan 10th, but have subsided somewhat in the last two or three months, but were still occurring in that time.
I had one on Monday night just gone, a series of stroke like symptoms cascading through the night with each lasting for 10 to 60 seconds before clearing and then followed by another within 5 to 10 minutes, in total on Monday maybe 20 or 25 times, followed on Teusday by another 20, Wednesday none and then Thursday a cluster of half a dozen or so. Each a transient mix of facial numbness, drooling, left side facial paralysis a fuzzy head and cerebral tingling.
Through out my 10 months and 14 days post stroke I have returned countless times to my GP’s, three different GP’s in fact in an attempt to be heard and try to seek out a solution and cause to my episodes. I was told by my stroke consultant on a number of occasions that it was not possible for my episodes to be TIA’s as it would be impossible to endure so many and that the frequency of occurence would have resulted in multiple strokes.
Today I had a GP appointment to follow up on an MRi I begged for in August, I’d asked for the MRi after a savage cluster of episodes that I felt were becoming unsurvivable and wanted someone to look and see if the episodes I was enduring were causing any damage to my brain.
The results I got today were clear…
…however, they reviewed my MRi with contrast from February 2022, a scan I had after returning to hospital post what appeared to be another stroke, just four weeks after my actual stroke, my consultant asked for an angiogram to check my brains vein integrity and reported post scan, that all was well.
Today I was told that my February sca had been reviewed and that there’s a significant stenosis in a vein in the middle of my brain on the RHS, that it is the reason for my original stroke, did cause the blood clot that led to my infraction and will be the reasoning behind my episodes.
Until today, I was told that my stroke was cryptogenic, so was never looking for a reason why it happened, I was just accepting that it did.
The stenosis is being referrred to the neuro surgery team for apprasial as it is described as a significant narrowing and will be intermittently restricting blood flow to the entire right side of my brain and surprise surprise, cause cascading stroke like symptoms and TIA’s
I don’t have epilepsy, or seizures, I never needed tegretol nor most likely an EEG.
What I needed was someone to do their job in February and read my angiogram right, any of my doctors or consultants since to not “gaslight” me with their lazy uninterested, to busy to care clinology, to not tell me I needed to “meditate” or “relax” and practice mindfulness, to not to tell me it was impossible for my episodes to be TIA’s and to actually just listen as time and time and time again I described cascading stroke like symptoms over and over and over. I wrote a and recorded a letter to both my GP and consulatnt to get my last MRi, believing that by providing a written record of my symptoms they would perhaps be forced to listen by me recording in writing my condition in the belief that if I dropped down dead, maybe someone would be able to hold them to account for not listening to what I was telling them all along.
From there to here 500 is a low ball number for my episodes, it’s probably more like a 1’000…and the only reason I got as far as this, and actually managed to find out WTF is going on in my head is by repeatedly returning to them, with more and more records, requests, insistance for assistance that has eventually led someone looking back at the procedure they should have got the resultsright to in February.
Don’t ever doubt what you know yourself, if you really feel it and believe that something is wrong, don’t accept the word of someone not living your experience that it’s something else that suits their conveience but not your own instinct.
We’re the professionals when it comes to our bodies, we’re the ones driving it.
Today I took my first statin, it’s supposed to stabilise the stenosis, ease the flow of blood past it and get me to the neuro surgery team who may insist on trying a stent, perhaps even an operation.
I will face my next episode, which I’m sure will come, in good order like all the others before it knowing what exactly is happening to me for the first time in 10 and a half months, I’m not sure whether it will help or hinder me in surviving it, but like all those before, I’ll face it alone in my own head and if I make it out the other side unscathed will be as determined as ever to keep my will to live alive and kicking.
I apologise for hogging so much forum this week, it’s been quite a baller, I guess the moral of my story is ask, ask and ask again even if your doctor tells you you’re looking for problems, even if your consultant tells you your scans are all good and all clear, and especially if your body tells you that they all know nothing and feel nothing about what you feel inside.
Be good good people, save your sorrows for the dead, the living having no need or purpose for thoughts and prayers, I’m well and alive and seriously considering acosting the next smoker I see for a “very very naughty” ciggie, becaue after survivng a 1000 plus TIA’s, I f*****king don’t care about sneaking a cheeky one…hahah (joking I won’t, but I bloody should and stick two fingers up to those Greek gods playing games with me)