Any CARDIOLOGISTS about please ?

[medianewbie]

If so, could you please read the below (long, sorry!) & give an opinion whether worth seeking further clarification this?
I appreciate any reply is not medically binding etc I'm just trying to work out if more info could be available thus if it's worth stress of trying to obtain it.

Ds, 19, had Covid last Autumn. On & off mild chest pain over the winter but wouldn't see GP. (Autistic) Then really sudden severe chest pain & vomiting at 2am 1st July. Went into A&E. Troponin was 2.5K & reached 5.5K over next 48 hours.

Small local hospital. Said 'cant be a heart attack as he is too young but don't know what it is'. Admitted, busy so put o dementia ward where Ds was frightened. Troponin increased so moved to high needs ward. Chest Xray & ECG & dx with Myocarditis & LVSD.
Had cMRI & discharged immediately after.No further info. Given 1.25 mg Bisopralol & Dapagliflozin 5 d. worth.

Told to return if bad chest pain. Did, 48 hours later (Troponin 150 at that point).
Continued chest pain so tests (not cMRI) re-done 6 wks ago. T down to 5, no inflammation but 'high' white cells (& Ds cholesterol is 'high'): all well.
Consultant: said 'cMRI ('don't have time to show you, so take my word') shows minor scarring on ventricle but you'll be fine. Off you go to Uni & return to the gym. Get on with your life'. Explained that Ds could hardly walk due to exhaustion & having frequent chest pain. 'It will pass'. Dapagliflozin stopped.

4 weeks later Ds had boosters for flu, pnuemo, & overdue polio, meningitis etc (outstanding due to covid years)
Spread over 2 doses over the 4 weeks expected to feel a bit rough so lots of rest & no panic at all but really went backwards so back to A&E 2 week ago.

T level 5, & inflammation low, white blood cells raised, chest scan okay. Told 'best to make an appointment to see GP now' if worried. Given a 48 hour holster monitor. Told results will take 'around 2 months' so no result yet.

DS has Autism. He finds it hard to describe pain / hard to give a 'pain score'. He can ignore winter of 'sore chest' (didn't really tell me at time) but will cry at a simple blood draw. Thus
I accompany him to help advocate. He is 19 but looks 30. I've had raised eyebrows that I 'tag along' but we had a poor experience in hospital & hes clearly still worried & in frequent pain.

Yesterday he said he had: sore upper left chest & sore under his arm. Heart 'jumping around'. chest feels tight - all are momentary but increasing in frequency / pain level. He gets this in bed or when sitting quietly worse on exertion. Worse lying down, leaning back, or on left side. He had increasing pain until mid afternoon when he came to me & said: 'what if this is IT Mum, am I going to die?'. I assured him he was not going to die. This was the MRI 'aftershocks' of the Myocarditis & to take pain relief (he's s scared of this as he is worried it might 'hide things'). It's a frustrating mental circuit but I can understand it as when we initially went in he had 'not been feeling as bad as he does now' so he's scared something is going on that is not being picked up. He then vomited, started to shake & went cold & clammy. Obviously that could be his heart or it could be a bad panic attack. It didn't pass so I called 111 for advice who sent an ambulance. The paramedics were great, he calmed down & his heart tracings were good but they said he looked really unwell so they took him in so his bloods could be checked. We spent 5 hours in A&E & his bloods were the same as before.We were told: 'go home, take pain meds 24/7, wait for Consultant to contact you IF he thinks necessary'. Same as last trip to A&E so wont go again: stressful for Ds & waste NHS resources.

If you've got this far (!) here is my thought. In A&E he was on telemetry for around 4 hours & I found myself watching the green heartbeat number & the pattern itself (he couldn't see me doing this). His heartrate varied from 72-138 but was mostly around the 98-108 region & for periods of around 10/15 mins at a time there was a nice regular beat. But then there would be quite a few very 'bumpy' baseline (not pointy bit) beats before regular again. At that point he'd say: 'ow, ow, here it is again'. He looked scared & in pain. Over the 4 hours this was happening a lot.

Upon discharge I asked the Dr about it. She looked at the telemetry & said:

'oh yes, I see what you mean. Well that is his heartrate bumping up as a result of pain. Like when you stub your toe. But general tracing shape looks good'.

I am glad all is basically well. I'm grateful for, & don't dispute, NHS tests.

But he's not 'imagining it'. He's been stressing about this as his Autism means he struggles with interoception (he doenst know if he is hungry, cold, needs the loo till the last second etc). What we gained from yesterday is reassurance that his T level is good but also that he needs more explaination of why he is having this ongoing pain & someone other than me to convince him its okay to take a pill to relieve it. He really disliked the Consultant we saw & I know that 'a 2nd opinion' will take forever (& 1st C has to approve it!)
We can't get any more info ourselves as no results available online (we are in Scotland).

So, I was considering making appt at the nearest private hospital asap to get someone to go through his cMRI with him to reassure him & talk over things.

I was at this point a few weeks back. But he seemed to getting a bit better before he got worse again (sharp pain, heartbeat 'jumping around' feeling like he has electric pulses around arms)

I was hoping to avoid further Drs/ tests etc as it is clearly stressful - BUT -

I want him to feel able to go back to College & to be able to go for a walk.
To feel confident again. Most of all not to be scared. Do you think a different Cardiologist might be able to explain things / reassure him a bit more ?

If you can afford a private consultation I would absolutely do it. Whereabouts are you?

Has anyone mentioned costochondritis? And anxiety can give palpatations and electric shock feelings. I’m just trying to think outside the box, so to speak.

I’m a consultant in a linked specialty but you don’t actually need a cardiologist to tell you that if DS did not like or trust the other consultant and still has significant health anxiety that he might benefit form
seeing someone else who will take the time to explain and reassure both of you.

Thank you for reading my essay!

The nearest big city to me is Edinburgh.
I appreciate I don't need a Cardiologist to tell me that Ds would benefit from a different person go through his results but would it need to be a Cardiologist /someone familiar with cMRI & Myocarditis in particular to do that?

I understand that this is now linked to anxiety (which was wholly avoidable, I posted in the 5 days & clearly Ds was not treated well but that's done now).
But I feel Ds needs to understand it better to help him process it & move on

I think yes, you would need a cardiologist. There are lots of them in Edinburgh so maybe go onto the SPIRE website and look at all their qualifications.

I think a lot of medicine is reassuring people and giving decent explanations. The NHS in Scotland is appalling at the moment. I retired a year ago but my son in law is a nurse and a very good friend if mine is the most senior nurse in the speciality she works in and was telling me last night how awful waiting lists etc were.
I remember your original posts. It's a really worrying time for you. I was a GP so not something I have expertise on but a second opinion/ explanation session would be good.

Thanks @Musicaltheatremum. I think a big part of it is what he went through in hospital. BUT he is also feeling worse. 3m on he can't walk around the block. If he does 3 hours of study he's wiped out for 3 days. It's not great at 19 y/o.
He did say earlier that he's scared the scarring on his heart is permanent & is causing/ will cause problems. Given his Cardiologist won't discuss it or show him I think the best bet is to get another Cardiologist to view it & discuss with him (& poss adjust his meds to reduce the palpitations etc).
I'm angry that he's been left in this position but the main thing is to change it. Wish us luck !!

Went to GP to ask for Ds' notes to be sent for private referral. Dr said 'didn't know how' & would ask Practice Manager (oh great: we have made formal complaint about before: upheld)
Said 'had no copies of tests from hospital' . I noticed one as she scrolled through screen. Asked for copy. Said I'd have to apply for patient records (40 days). I argued & got copy from Reception on way out. Its the MRI.
So LVEF: 68%, RVEF: 51%. Trivial pericardial effusion. Subtle changes in basal inferolateral wall (both long & short axis). Further probable patchy subpicardial LGE in mid to apical anterolateral segments. Suggests dx of Myocarditis but should be correlated with clinical picture'. The discharge letter from A&E on Sat says: no pain, no nausea'. This is odd as he described both more than once. 'Patient discharged with red flag advice'. Not sure what that means? A nurse said 'all looks OK you can go now' & left. Ds took own telemetry off & we left.

You need to make a dsar request fir both gp and hospital, although it can take up to 28 days to receive notes and images. Red flag advice is saying (or giving a leaflet) with symptoms needing acute care listed ie. Sudden chest pain, breathlessness.

@LIZS thank you. I recently did that for my own notes. It took 40 days. Images sent electronically were so poor as to be almost 'unreadable'. I queried it & was told 'it must be your computer they were clear when we sent them'. Pfff. I got paper copies of (all?) notes though.
30mins after we got home I got a phone call from GP concerned I had asked Reception for copy of Ds' MRI results letter. I explained that she herself had said we could ask Reception, when Ds & I had asked her for it in her Consulting room. She said Head of Practice has requested a letter from Ds to confirm. There is already one on his file but they need one dated today. Apparently.
I'm hoping MRI info above would be enough for a Consultant to reassure Ds as I can't see the Hospital handing over the pics & GP won't help. Extraordinary.

Called private hospital & they'll request copies of raw data of all scans (hope that works). I now know that Ds' dx was actually provisional (MRI read in neighbouring health Borough: ours has 1 person qualified to read gadolinium MRI's & they are off long term sick) Consultant told us dx was both certain & that Ds was fully recovered. 2nd opinion vital. Hopefully within 2 weeks.

@medianewbie what a palava. By the time the doctor had explained the system to request notes they could have printed the result off. I'm glad I'm retired....far too much red tape in practice now. Who are you seeing privately?

@Musicaltheatremum my main concern is that the clear lack of support will extend to them not providing the raw data of tests done so far. I don't want Ds to have to have a 2nd MRI due to this, only if he really needs one as its obviously stressful for him, & reduction of stress (& possible resulting 'sore chest' & arrhythmia is exactly what I'm trying to achieve). MRI brief written report gives provisional dx & says he has scarring on his heart in 2 different areas. This may or may not account for current symptoms. We just need reassured. Current Cardiologist can't read his cMRI so can't offer that.

As to who to see - there are quite a few so it's hard to tell & I'm scared to pick the 'wrong person' as Ds doesn't need any more lack of specialist knowledge/ poor communication. I don't suppose should put names online but I had a personal recommendation of a Mr CL & I also thought a Mr F looked promising as he has an interest in the overlap between heart issues & psychology.
I suspect anyone would be worthwhile.

Yes I see where you are coming from re results Both good choices of people. Worth phoning and seeing what experience of cardiac MRI they have(sorry, I'm sure you're doing this) Also look at Dr CS.

@Musicaltheatremum - rhanks, rhats helpful x When you call up you can chose the booking team (no med exp) or you can go through to a particular Consultant's secretary. Can I call 2 or 3 of them to describe Ds situation & ask if they felt they could help? Is that how this works (if do v different to NHS!)

I would try the secretaries. They're usually very helpful. I think if you're deciding how best to spend your money then that's the best way forward.