Downgrading - a post code phenomena?

[Chinkoflight]

3 months ago to the day, out of the blue, no other known health problems, I had a severe stroke whilst away from home. Blue light/thrombolised/Lazarus like recovery/ discharged with notes for further investigations to my local stroke team.

GP put the request in for ECG holter and Echocardiogram etc. Advised that the earliest I could get a holter ECG was 12+ weeks so I committed the sin of going private (no health insurance). Nothing unusual seen on ECG (except Bradycardia and ectopic beats) or echocardiogram, cardiologist recommended Doppler on Carotids but this could only be 'ordered' by the stroke team. +4 week wait for a telephone appt with stroke consultant who minimised my stroke having read the summary notes on the basis of my recovery. They had not seen scans so would request these. Second telephone appt tomorrow, I assume scans have now been seen, and letter now headed TIA referral. My understanding is that TIA is a redundant term but I'm predicting that I'll be signed off tomorrow and I doubt anything I say will change the outcome.

The probability of a second stroke increases throughout the first year and closer monitoring is advised. Thankfully after some persuasion my GP is more on board but even this was a challenge to get past the triage system.

I am taking some personal responsibility, I have completed C25K (brilliant can't recommend highly enough) and now continuing with 5-10k but taking this more slowly with lots of repeats.

I know had I stayed in the area where I had the stroke the multidisciplinary team around supporting stroke including mental health was fantastic.

Hence my conclusion post code lottery.

[Blackcatsooty]

Dear Chinkolight

TIAs leave your brain undamaged, because they are transient. full ischemic attacks will make permanent damage.

I do hope you are indeed TIA.

The hospital will send diagnosis etc to your GP. You are entitled to a copy. Go to the GP staff to get your copy. No need for a GP appointment.

I too had a Lazarus moment when, on day four, I got up and walked. But the last seven years have been pretty awful. Permanent brain damage is not good. You might get the benefit of your brain working around the damage that’s termed neuroplacity, but at our age, we are unlikely to get full recovery.

So let’s pray that you had TIA.

Best wishes

[Chinkoflight in reply to Blackcatsooty]

Thanks for the helpful reply. On entry I had full right side paralysis and aphasia judged to be a mid cerebral artery clot. After the Lazarus moment I'm left with some speech/word problems and loss of peripheral vision in the right eye. Some minor loss of sensation in my right leg but this is slowly coming back. None of the issues are noticeable in normal day to day interaction. The cardiologist said lucky to be alive', and 'luckier to have no significant disabilities'. On entry to hospital I had the most severe, by some way, stroke impact disabilities of those recently admitted. I was thankful to be the first to be discharged. Had I been admitted to my local hospital it is clear I would have had some form, however limited, of community stroke based follow up and resource, even if this had been a voluntary group. This would also have been the case in the hospital I was treated in. But because I wasn't 'admitted' on return , and won't I surmise, be admitted by the local stroke consultant on to the patient list, I cannot be referred to any community stroke support services, even by my GP. The Stroke Association doesn't organise locally because the local Trust has apparently an award winning community stroke service!

I am grateful to be so well. But because this was a cryptogenic stroke and further investigation for example an ECG implant isn't being offered, or a Doppler carotid scan recommended by my GP and cardiologist, it would be if I was in Birmingham say, I have to 'wait for the next stroke?'. The prognosis for a second stroke is always worse and ultimately would prove costly for the NHS.

[Blackcatsooty in reply to Chinkoflight]

I suspect and hope that you are well past the danger stage. Yes, stroke treatment is indeed a postcode lottery. The stroke got me in 2015. I had retired to deepest rural Essex from Harrow and one concern was the lack of medical services. But wow did they work for me. I am miles away from any hospital or even any ambulance station, but the first responder arrived in two minutes and an ambulance in five minutes. Colchester had a very advanced stroke unit including a whole team of physiotherapists.. on arrival, the ambulance was met by a crash team and I went to the dedicated stroke admissions where a nurse was allocated and she sat by my bed until a ward sister took over and took me to the ward.

Once discharged I discovered that my village was excluded from cover by the Stroke Association.

I contacted the library, gp surgery , council and church. And found the stroke association online.

Can I venture to suggest that maybe you concentrate on recovery rather than looking for medical procedures.

In April 2020 I needed urgent heart op. I often thought about poor souls having strokes whilst the pandemic raged.

And I knew that rehab for heart patients is very important. But none was/is available.

Our NHS is broken.

Best wishes

[Chinkoflight in reply to Blackcatsooty]

Thanks again, point taken. I am doing both, and have just graduated on C25K from being a lifetime non-runner and plan to do my first parkrun this weekend. All the best.

[Hidden in reply to Blackcatsooty]

Have to agree with both yourself and chinkiflught. Postcode Lottery right enough. August 2020 was HA for me. I live ten minutes from a general hospital which has a poor reputation sadly. Paramedics made the decision to blue light me to the main heart specialist hospital around an hour away and I am so grateful for their decision. The care I got there was exemplary. I would not be here without that fantastic heart team. Was eventually discharged to the hospital nearer home. Depressing experience . It’s such a pity we find ourselves having to fight our own corner.

[10gingercats]

I had a TIA(yes that is what they called it) when not yet on any anticoagulant. No brain damage noted but I knew exactly what was happening to me and immediately from the word go started to write and kept talking to try and reduce the worsening of the stroke effect.I was started on Warfarin in hospital as Like you it seemed another stroke might be likely in the near future. Luckily, a few years on I am ok. although heart has taken a battering in various directions.I find exercise is beneficial and I do not have any spare I wish you luck with your various tests and hope you get a response sooner rather than later. Get yourself onto the dept.s cancellation list(s). If someone cancels they can ring you and you can be seen sooner.

[Heather1957 in reply to 10gingercats]

I am always intrigued as to how they can say a person has had a TIA, how do they know? I had a stroke in 2017, confirmed by a head MRI that showed dead parts of the brain (gone grey). When people say they have had a TIA how is that something they can label?

[Chinkoflight in reply to Heather1957]

My understanding from the team who treated me, and further reading, that the term TIA is not really used anymore as it is not properly defined, it's a bit of a post hoc explanation for symptoms that were untreated at the time. I'm most concerned with trying to prevent a further stroke and to do that the common causes need to be investigated. I feel I have fallen between the cracks by having the stroke away from home and coming back for the follow up investigations to a team who haven't and don't want to see me because I made a good recovery albeit with the usual can't drive for a month, insurance etc issues. Ah well, I am one off the fortunate ones, and that is true.

[Heather1957 in reply to Chinkoflight]

I too consider myself very lucky! I had my stroke 4 days after my angiogram and while the medics won't link the 2 it seems pretty obvious to me that one caused the other.Paramedics initially said I was okay (my eyes wouldn't focus and I couldn't walk in a straight line).

I presented at the hospital and was admitted and taken to the stroke ward of another hospital.

After a couple of days, I could walk in a straight line and my eyes managed to focus. 5 years later all I have is the odd twitch in my right hand and my balance is a little off.

I am just glad they knew what it was.

I have heard several people say they have had a TIA and my understanding is that it is a temporary road block (in the brain) but never knew how it is diagnosed.

[Holiday12345 in reply to Heather1957]

I had two TIAs a year ago and luckily hospital has one of best stroke units in U.K. (simply because it is in such an unhealthy area strokes are common). Symptoms as classic stroke both times but completely cleared away in about twenty mins. Mri showed the area where ‘Tia’ happened… although they couldn’t agree whether it was acute or sub acute… whatever that means. Lots folk with tias nothing shows up on mri. Carteroids we’re clear. I’ve nursed lot of elderly with stroke and symptoms for me were classic… falling to left slurring words, left side of face drooping everything in slow motion (in my head atleast). Not full stroke as it was Transient and cleared up pretty quickly. But I have only just had three day heart trace to rule out Afib a year and a half after TIAs instead of two weeks that’s how backed up system is here due to Covid

[Chinkoflight in reply to 10gingercats]

Thanks, I'm glad you haven't had a further stroke and I have to trust in the Clopidogrel and Atorvastatin regime I am now on. I suppose I am miffed because I haven't had any routine follow up tests on the NHS and the Carotids for example have not been checked. I had full right side paralysis and aphasia and was unconscious for a while, my discharge notes described a severe stroke. Because I have made a good recovery, the local consultant who has not seen me, one short telephone conversation paraphrase 'i am glad you have recovered, can't have been that bad' clearly is busy and is re-interpreting the other consultants diagnosis. I'm sure my anxiety will continue to reduce over time but I know we're I in another trust area or I had fallen ill in my own trust area I would have had more extensive investigations.

[Qualipop in reply to Chinkoflight]

YOu can always ask for a second opinion if you feel hat consultant is ignoring you.