500 TIA's and counting

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)

Al Xx

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Good morning Al @Pontwander. There is such an important lesson here. It should not be this hard. You are not asking for sympathy so I won’t give it. I’m just grateful you are still here and still fighting. Avoid the ciggies though please, but grant freedom to the two fingers. Julia x

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Thank you Julia

Your pragmatism is much appreciated…
I gave up smoking eight days after my stroke with real ease and have felt no real hankering pull to go back since, my desire to acost the nearest smoker comes from an overwhelmimg urge to do the wrong thing, be very naughty and show my bare bottom to the gods and medical profession at large ad hoc…

but I will resist my tempestuous urge…haha.
Al. X

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@Pontwander good morning, you’ve come along way and a very rough ride.

Questions to ask is something I do constantly you are right to asking and correct about our bodies we are the drivers NOT the doctors. I never accept their prognosis as they are 10/10 wrong and seem to keep on making mistakes.

Medical school for doctors I think I’d rather see a vet!

I’m glad you preserved but how frustrating it’s been for you this nightmare journey.

Do a moonie in the hospital windows :roll_eyes::wink:

You must have been awake very early, I hope you managed to go back to sleep.

Keep going and I’m thinking of you have a nicer weekend than you’ve had. (NO ciggys :wave:) my kindest regards Loraine

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Well done pontwander for persevering, what a nightmare for you, but I am so glad you finally got some answers and that you are staying positive.
Keep your chin up.
Jane.

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@Pontwander it’s been a difficult journey for you, but you’ve finally got your answer, hopefully the treatment will prevent further episodes for you, fantastic job at sticking to your resolve and getting the medical professionals to look further for you.

Best wishes

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By Jove Alan, that’s a knotty ride. It’s called symptom satisfaction and is a worldwide healthcare phenomenon that is only alleviated by forward thinking and energetic healthcare professionals willing to put in some extra time to resolve the conditions of their patients. It’s good that they have detected the stenosis and that you pushed for clarity. I recall once, as a child at school, having a teacher who told the class some misinformation on a particular subject. I challenged what she had said and got in trouble. Sometimes, that situation reminds me of certain predicaments I’ve been in as an adult when it comes to authority :woozy_face:

I can’t help you with advice on the ciggy front, I have a pipe and pipe tobacco in my study that I sometimes turn to when I want to thumb my nose at entropy and existentialism. I hope with some of these creases beginning to be ironed out, you can progress forward to a better sense of well-being.

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@Pontwander wow Al, you’ve been through the mill. You are right about persisting when you know something isn’t right. Fingers crossed you now get the correct treatment & your symptoms start to ease.
You could put an official complaint in if you have the energy.
Wishing you all the best.

Ann x

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I agree wholeheartedly with @Mrs5K …. If you’re well enough this definitely deserves being reported @Pontwander. I’m going thru something similar … but at last am seeing a Neurologist this week and he’s going to do the tests that should have been done last March. Wishing you well, you’re a very stoic person to go thru so much, without appropriate support :clap::hugs: Take Care, another Anne :sparkles::sparkles:

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@Pontwander so pleased Al that you have persevered and finally got the medical profession to listen. It’s so frustrating hitting ones head against the proverbial “brick wall”. You didn’t need all this. Wish you well moving forward, Marie

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Al What a story wow! Astounding how you are still here, and major kudos to you! Please don’t tempt fate and lay off the fags though! Take care of YOU. Peace Carole x

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Good morning folks…

Thank you for your kind words…
I haven’t found a smoker to acost so that one has passed me by and I won’t be chasing it up any…
I’ve had a quiet weekend handing out free trees for the National Forest of Wales and adjusting to the statins I’ve been prescribed.

A few of you have commented that a complaint would be valid, and I agree whole heartedly, how a patient post stroke can repeatdely present themselves with TIA symptoms over and over and over and be ignored is beyond comprehension, but I don’t feel I have the time, energy or inclination to write one up as it would involve so many people across so many departments all of whom have been negligent and unprofessional. Maybe one day, if I get to a resolution I’ll consider it again.

Take care all, I’ll see you soon.
Al X

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@Pontwander i totally undestand re the complaint. It does take a lot of energy. Hope the statins arent causing you any problems.
I love tgat you’ve been giving away trees. And great that you’ve avoided the smoker :grin:
Best wishes.

Ann x

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@Pontwander as @Mrs5K love the fact you have been giving away trees too.

Yeah it’s a slog to try and complain. We wrote 6 letters about the stroke consultant and they turned everything around it was very exhausting so we give up. I think our nhs system is not only stretched but also uncaring. The big wigs receive a high pay and greedily take it wild the staff or given peanuts the whole system needs a shake up. My cousins daughter has worked for NHS in admin for 22 years she crossed over to agency staff 2 years ago and will only work 2, 12 hour shifts at weekends and comes home with a 40 hour weeks pay, so something wrong.

You have the will power now to say no to the craven keep goi g best wishes Loraine

Anyway

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Hi Ann and Loraine…

My little nursery is a part of the national scheme to provide a free tree (or three) for every household in Wales.

It was a welcome distraction to be up there all weekend, even if it’s now finally getting colder and I’m hunkered down in my little poly tunnel…
I have a camping stove and potter about between collections and in the big poly, behind the screen, is a full sized set of bunk beds with a camp bed on, so when I need too, I go and lie down and listen to the birds, my over blanket is a big sheet of bubble wrap, hahaha…
I am a proper stig of the dump by all accounts, but warm and dry, so have no care for what that looks like.

Al X

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@Pontwander sounds like perfect outside doorsie freedom so glad you enjoy it. I would need a full snow suit on :joy::joy::joy: keep going and happy days :hugs:

Love the idea of planting trees, we have planted a few in our garden I get very excited as it grows.

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@Pontwander your little haven sounds great & I love the bubble wrap idea. I’m with @Loshy on the snowsuit idea :rofl:
Our local water company did a tree giveaway a while ago & a few were planted in and around the village. We have been planting fruit trees in our garden & also some hawthorn hedging.

Ann x

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My goodness what a journey you have been on. let’s hope now it’s onwards and upwards.
Take care stay strong and question everything.
Dottie.

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Hi Al, I’m sorry for what you have gone through and can empathise, most of all I am glad you had the tenacity and strength to keep going. In this country there are good doctors but all your comments are justified, there is a lot of sloppiness. The problem is we treat doctors like demigods and for years would never dare question anything they said. Luckily, I have had the opportunity to experience doctors abroad, where it is a normal job and the health service actually works. I am 100% behind you, thank you for posting, it has helped a lot.

Kind regards
Marilyn

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