Scan results flabbergasted

[Jenzhearts]

Consultant just been round the results of my scan show good blood flow and mild disease.they show Microvascular are diseased but I don’t have MVD as the scan didn’t show it.then when I pressed him he said it could be the tiny ones that don’t show and shrugged.

He said I don’t have unstable angina as u can’t get it at rest it comes on with exertion so I challenged him that it’s well documented by various medical journals and bhf. He said who diagnosed you with that so I said MRI and he said it can’t have been cardiac so I said well it’s written down by them and also your colleague. He changed the subject.

So he says it’s not cardiac as I’m on too many medications for angina.

I feel deflated but not too shocked and I’ve asked the a copy of my scan results.

I can’t go home as I’ve picked up what seems to be a stomach bug so got to wait for the results to come back

[Milkfairy Heart Star]

Perhaps ask for a second opinion? It sounds as though the Cardiologist you saw is not up to speed with microvascular and vasospastic angina.

The blood flows beautifully through my coronary blood vessels. My coronary arteries just have a habit of going into transient constrictions causing a lack of blood supply to my heart.

My vasospastic angina was diagnosed by an angiogram with acetylcholine.

The tests you have so far been offered do not rule out coronary vasospasms.

Ask the Cardiologist if they are aware of these documents?

covadis.online/definitions/

internationalheartspasmsall...

[Jenzhearts in reply to Milkfairy]

There won’t be any more dialect as another consultant registrar and sister just appeared round my bed and basically told me they are discharging me from cardiology and I can go home or sorry they would like me to go home today.I’m going to go home and gather my thoughts and see what I want to do next.the way they ambushed me and taking notes! Almost like they scared of summat xx

[Milkfairy Heart Star in reply to Jenzhearts]

In my experience they are scared of not knowing and being embarrassed by their lack of knowledge.

I have a confirmed diagnosis and an agreed careplan and over the years I have had Cardiologists trying to gaslight me too.

It happened during my last admission. The on call consultant went very quiet once I told him who had approved my plan....his boss.

[Noodlesalad in reply to Jenzhearts]

I just want to say I found your thread courageous and inspiring.You stood up to what must have been not just an ambush but an incident that must have been very stressful for you and you stood your ground.

Consults need to listen to their patients very carefully and their knowledge of their condition, yes some results and investigations are read differently by different specialists this does not mean you're original diagnosis was incorrect and they now have the right interpretation and answer.

I'm sorry you were bullied but I'm glad you stood your ground and wish I was as brave.

Hope you're stomach bug gets better soon and thank you on behalf of all lesser strong people like me.

[Psyche3 in reply to Jenzhearts]

I have had a similar event. My stress test scan result was unremarkable ( his words ) so instead of coming up with a different idea, he discharged me from cardiology. You just feel they want rid of you one way or other and have no concern over how you cope with it. So we just struggle on. Good luck with your next move.

[Jenzhearts]

well now I am confused just got my discharge notes and it says I DO have Angina and also Diffuse CAD which I googled and it says subtype of CAD and is more difficultly to treat.they have also asked me to wait for my meds? So even tho I am not classed as having cardiac pain they are still sending me home with anti anginals.oh the mind boggles

[Tos92 in reply to Jenzhearts]

My local hospital in 2022 decided that I didn’t have angina but they kept me on a calcium channel blocker regardless for chest pain. I have my diagnoses of CAS and MVA now, but it really does make you wonder doesn’t it.

[Milkfairy Heart Star in reply to Tos92]

There is sadly an ongoing issue that women's heart disease goes under recognised, under researched, under diagnosed and under treated.

It is well known women face an unconscious bias.

bhf.org.uk/informationsuppo...

thelancet.com/commissions/w...

academic.oup.com/eurheartj/...

[Jenzhearts in reply to Tos92]

Hi Tos92 how did u get your diagnosis in the end xx

[Tos92 in reply to Jenzhearts]

You might find this post helpful

healthunlocked.com/bhf/post...

I saw an INOCA specialist privately and he gave me the diagnoses in our first meeting. He no longer works for the NHS, but there are a number of specialists which still do if you prefer to take this route. The list of specialists are provided in the link below or in the post I’ve linked above.

inocainternational.com

I hope you get some answers soon x

[AuntyEdna in reply to Jenzhearts]

This sounds so much like my treatment! Infact I was so appallingly treated at the end of my four days in hospital I took my phone out and took pictures of my notes for that stay. They had been ‘thrown “ on the bed /at me by a very rude cardiologist who had performed my angiogram.

I have every sympathy and like you then received discharge papers confirming I had Microvascular Angina but no mention of a mini heart attach after confirming tropin levels were raised. I was sent home with Diltiazem Ranexa Aspirin Citalopram. I was already on statins after a previous brain scan .

The GP sent me to another consultant who at one conversation said I had something odd going on after looking at my heart scan - you could see it flexing in one are when I went into a bad MVA spasm - 20 mins+ ! then when asked about if it’s unstable or stable angina said it can’t be unstable that only comes on with exercise. Mine happens ONLY at rest and during cold and windy weather etc.

Sorry for the long post

You have my sympathy and I hope you get looked after going forward

Take care , only you know your body, don’t give up 🤗

[Milkfairy Heart Star in reply to AuntyEdna]

Hello,We shouldn't have to endure this unprofessional behaviour by the staff we encounter.

I have been examined without my consent, my careplan thrown across the room, my IV GTN infusion abruptly stopped by a doctor, told my ECG changes are artefacts, told my chest pain is in my head.

It's been a long 11 years.

[Stent2024 in reply to Milkfairy]

Sorry for your journey . You’ve been treated shockingly by the sounds of it

[BaronFrankenstein in reply to Milkfairy]

Just curious how did you get examined without your consent? Were you unconscious or delrious due to pain / reduced oxygen / drugs?

[Milkfairy Heart Star in reply to BaronFrankenstein]

When I have severe coronary vasospasms I also have sensitivity to light and sound.

I cover my eyes with a scarf.

When I was in hospital, an on call Cardiologist just leant over and pressed his hand hard on my chest to the left of my sternum, this included part of my left breast without warning.

I couldn't see what he was about to do because my eyes were covered.

This was a totally unnecessary examination as I have a confirmed diagnosis of vasospastic angina not a muscle skeletal problem.

I later received a formal letter of apology from the hospital.

[BaronFrankenstein in reply to Milkfairy]

Oh i see. Thanks for explaining. Not long after i had a heart attack and stent fitted i thought i was getting a migraine but i didnt have a headache or light sensitivity, but i did have greying out in my left eye and for the first time ever I had zig zag flashing lines in my field of vision.

[Bunkular in reply to BaronFrankenstein]

That is a classic migraine style aura you experienced with the greying out of the bottom or upper half of vision in 1 eye with some flashing sparkles of light. It took me a long time to figure out what that was. Sometimes it would go to a full on migraine but I can ward it off if take an aspirin or acetaminophen & I sit quietly, bolt upright posture straight and relax my thoughts.

[BaronFrankenstein in reply to Bunkular]

I had migraines before then but this was the first with the zig zag lines but no associated headache. I thought i had had a bleed in my retina like i had some 20 odd years ago. But it went away and i havent had one since. I didnt get any sparkling coloured lights though it was just greying out and zig zag lines.

[AuntyEdna in reply to Milkfairy]

I really feel for you, you are so knowledgeable we don’t know what to do with out your knowledge and support. My journey is only five years but it seems like an age. I wonder if the medics realise what distress the cause.

Sorry for delayed reply - I am doing my walks after my pelvic organ operation, keep nipping out In between showers and wind ! I found the gynaecologist and anaesthetist were more knowledgeable and caring about MVA and my valve regurgitation than any cardiologist I’ve seen.!

Take care and thank you for being there for us 😊

[Milkfairy Heart Star in reply to AuntyEdna]

Thank you for your kind words. When I became ill, I read every bit of research going.

I armed myself with knowledge

I get myself in places to try and communicate to professionals the impact of microvascular and vasospastic angina on us all.

In particular the emotional and physical pain we go through.

I had a win today. My next botox treatment had been rescheduled and delayed.

I politely made PALS aware and bingo, I now have had my appointment brought forward 😌

I hope you continue to make a good recovery from your recent surgery.

[AuntyEdna in reply to Milkfairy]

Thank you , it’s quite tiring have an op the older you get, today visited my mother in law - 35 miles away, husband drove - knocked me out - slept all afternoon. I’ll remember PALS if I have issues , I used to have Botox for my cluster head/migraine - worked to a point then they gave me Occipital nerve blocks at the back of my scull - worked so well I no longer have Botox! Take care ☺️

[Stent2024 in reply to Jenzhearts]

When my go sent me to a and e in November with angina type pains , they thought I’d had heart attack as my troponin level was raised , than after repeating they said I hadn’t it was just angina , but discharge letter stated suspected mi , so don’t know if I did or not . Fast Forward a couple of weeks and and was seen by cardiology , who suspected my pain was die to vessels rather than arteries . Was booked into hospital Jan 9th for angiogram with mice vascular studies . Basically so many emergencies were brought in that day , they said they didn’t have time to do the study part as almost 5pm and it takes longer to do . Cut a long story short they gave me the option of going home and coming back in 4-6 weeks or going ahead with just the angiogram , which I did , and they found my rca was more than 95% blocked , so they put in a stent , so glad I didn’t go home that day . I have echo in Feb , so we will see how successful it has been . Sorry for such a long winded message . Wishing you well

[AuntyEdna in reply to Stent2024]

Wow you’ve been on a journey recently I do hope you are feeling a bit better, thank goodness you had the angiogram!

Take care of yourself 😊

[Stent2024 in reply to AuntyEdna]

Thank you , and you

[HHH2017 in reply to Jenzhearts]

Oh my! You poor thing you must be so frustrated! Huge kudos for speaking up and trying to stand your ground - so sad you need to though.

When you've had time to process a GP discussion ormerting with PALS to investigate a 2nd opinion may be options to investigate. Best of luck & hope bug improves asap.

[Catkin-blake]

if you aren’t happy with your consultant you are quite within your rights to ask fir a second opinion. speak to hospital PALS as they can help and advice

[BaronFrankenstein]

I thought unstable angina happens when you are resting, its unstable because its unpredictable? Wheras stable angina comes on with exertion but not whilst at rest.

[Milkfairy Heart Star in reply to BaronFrankenstein]

It's complicated for those of us living with vasospastic angina a rarer type of angina.

Vasospastic angina typically leads to chest pain at rest, usually between midnight and 6am in the morning rather than with exercise.

It's caused by transient constrictions of the coronary arteries which if prolonged can cause a heart attack or arrthymias.

[AuntyEdna in reply to BaronFrankenstein]

I did too I was taken aback at the response. It’s a minefield out there along with a medical lottery for sure! 🫣

[Stent2024 in reply to BaronFrankenstein]

That’s what I was told

[jerry12953]

"So he says it’s not cardiac as I’m on too many medications for angina."

That doesn't make sense. It seems to me there's some misunderstandings going on here, and as Baron Frankenstein says stable angina only comes on with exertion - not at rest.

I don't think getting angry at the medical profession actually helps although it IS understandable. If you are unhappy ask for a second opinion. I was very pleased that I did.

[Milkfairy Heart Star in reply to jerry12953]

"stable angina only comes on with exertion - not at rest."

If you have vasospastic angina you usually experience chest pain at rest rather than on exertion.

Chest pain on exertion is a sign of unstable vasospastic angina.

bhf.org.uk/informationsuppo....

[jerry12953 in reply to Milkfairy]

Apologies. I hadn't considered the difference between vasospastic and other forms of angina. I myself (probably) suffer from microvascular angina and consider myself "lucky".

[Milkfairy Heart Star in reply to jerry12953]

I agree it's confusing. Part of the problem is that so few Cardiologists or cardiac nurses have much knowledge about microvascular or vasospastic angina.

They are often overlooked causes of angina.

I hope you are able access the care you need.

Have you been offered any further testing to see if microvascular angina is causing your symptoms?

Microvascular angina isn't harmless it does require appropriate treatment.

[jerry12953 in reply to Milkfairy]

I had a couple of appts with a cardio who was completely out of her depth. When I said my angina was getting worse she doubled my dose of atorvastatin. Der....! I got much better attention when I asked for a 2nd opinion although I haven't had the gold standard test.

[Milkfairy Heart Star in reply to jerry12953]

Do you know about the iCorMicA trial? It's a study about how to diagnose microvascular angina.

Perhaps ask your Cardiologist to get in touch with the research team.

There are 25 centres taking part in the UK.

clinicaltrials.gov/study/NC...

[Jenzhearts in reply to Milkfairy]

Do you have to be referred by your consultant? Also it mention EJ of no more than 55% but the cardiac scan says mine is 58% xx

[Milkfairy Heart Star in reply to Jenzhearts]

You could contact the Research and Development team of your local hospital to get in contact with the research team.

[BaronFrankenstein in reply to Milkfairy]

Frim BHF website definitions.

Stable angina

This is the most common type of angina. It tends to happen when your heart works harder, such as when you’re walking uphill, and goes away when you rest.

You’ll usually know when it’s likely to happen and the pain or discomfort is similar to what you’ve had before.

Stable angina lasts five minutes or less, and improves if you rest or take your medication.

Unstable angina

Unstable angina can feel different to your normal angina symptoms. It can happen even when you’re resting. Unstable angina feels more severe and lasts longer. Your symptoms might not improve when you rest or take medication.

If your symptoms don’t improve when you rest of take medication, you should call 999 immediately.

Vasospastic angina

Also known as coronary artery spasm or Prinzmetal’s angina, Vasospastic angina is rare. It can happen during the night when you’re resting, when a coronary artery supplying blood and oxygen to your heart goes into spasm and narrows or tightens, and lets less blood through.

So vasospastic is like Unstable Angina but classed as a different condition even though it also happens at rest.

[Milkfairy Heart Star in reply to BaronFrankenstein]

I know the information on the BHF website well.I contributed to the information about vasospastic angina on the BHFwebsite.

The European Society of Cardiology published an update of the management of acute coronary syndromes ACS in 2023.

It brought vasospastic angina along with unstable angina under the umbrella term of acute coronary syndrome.

I have dynamic ECG changes with chest pain during admissions, I am viewed to have unstable angina and that's why I am given IV GTN infusion to stop my coronary vasospasms otherwise I could have a heart attack.

academic.oup.com/eurheartj/...

Terminology is ever evolving 😊

[BaronFrankenstein in reply to Milkfairy]

I see

[Jenzhearts in reply to Milkfairy]

my ecg doesn’t show changes and that’s another reason why they have brushed me off xx

[Milkfairy Heart Star in reply to Jenzhearts]

I don't always have ECG changes or in the past some of the doctors have tried to tell me the changes are ' artifacts'I now ask for copies of my ECGs and will ask one of the registrars to talk me trough my ECGs.

I have learned to read my ECGs as a result.

[Jenzhearts]

thank you everyone for your replies I’ve had a good sleep and feel better today.I’m going to take a couple of days rest and then tackle this head on xx

[Hatflinger]

The less they have found the happier you should be

[Jenzhearts]

lol in theory yes but it doesn’t help when I’m still in considerable pain and am being treated as if I’m making it up!

[Milkfairy Heart Star]

I was so relieved to be told by the Cardiologist who carried out my functional angiogram that he knew why I was having my chest pain.All my previous tests had been 'normal'

I remember saying to him ' so it's not in my head then?'

'No it's not in your head. Your pain is real, it's due to myocardial ischaemia caused by coronary vasospasms '

You are not making it up, your pain is real.

[Jenzhearts]

my lovely understanding GP is off sick until next week but I’ve managed to secure a telephone appointment with her and a face to face visit in a couple of weeks.that will give me time to gather my thoughts.

[Pyowacket]

Please persevere. You know your body best. It took me over six months to speak to a cardiologist and I'm not convinced they have figured everything out. Nevertheless Iike you I'll keep going till I feel better.

Good luck Jenzhearts