Results came back from my Myocardial Profusion Scan last Thursday. A&E had suggested Microvascular Dysfunction/Angina May 2021 after picking up the issue on ECG.
It’s been quite some journey to get a solid diagnosis. I first went to the GP in August 2020 after chest pains that started around Feb/March 2020, had, over a period of time, become an obvious problem . I had a clear Coronary Angiogram in February 2021.
However, the results of the scan in December has confirmed the diagnosis, as Ischemia was detected during the test. So I’ve been advised to continue with the antianginals (I’d struggle without them) and appointment with a cardiologist to follow.
Mentally, it’s a relief in the sense that it’s a known fact now. If I struggle in the future there’ll be no debate or doubt over how to treat me. It also motivates me where diet and exercise is concerned. See what I can do to help myself. I’m 51, need to lose a stone to get to the suggested BMI. No doubt if I can do that it’ll help.
So I’ve kind of completed my journey so to speak. Yeah I get the odd niggle, bad day. I get woken up in the early hours on those days. But it’s the niggle feeling that was a precursor, rather than the pain. So the antianginals appear to be controlling it.
I’ll be lurking so will try and offer support where I can to others. For me this has been an incredibly supportive forum.
Hi, SloopyLJ it's great for you to finally know what's wrong and feel like you say you have now got the diagnosis. You can now move forward with your life. You have been through a lot and this forum has helped you. There all Great the help and support that this hub gives is enormous. Enjoy your life healthier x kind regards Sheena x
Dear SlooyLJ
Welcome to the rest of your life.
How wonderful that life will be now that you have been told that you can go out and live it as fully as you desire.
Most peoples problems on here stem from lack of information on the diagnosis of whatever ailments they have.
That door has now been opened for you.
I expect to be driving past a field and seeing you running wild and free in it.
Good luck with everything and yes like me if you can give a little back, then why not.
What a relief to finally know what is causing your symptoms.
I felt vindicated when I had spontaneous and acetylcholine induced coronary vasospasms during my angiogram with acetylcholine. I had been told I couldn't have angina because my coronary arteries were clear.
I'll never forget the Cardiologist's words " we know what's wrong with you"
Unfortunately the lack of knowledge of microvascular and vasospastic angina can, still, mean that you may encounter Cardiologists who don't accept that microvascular angina is a serious problem.
I carry 2 documents with me at all times, my angiogram results and Admission protocol.
I am 10 years into my journey, the diagnosis is not the end of the journey rather phase one completed.
The journey in a sense never ends.
I have been told very clearly that it's important not to develop obstructive coronary artery disease too.
Now it's trying to do the best you can to manage your microvascular angina, losing weight is important. It's fantastic that you feel motivated to do this.
Diet, stress management are important too.
Keep taking the tablets. However be prepared to have to change your medication as necessary.
I had to seek out a Cardiologist who could support me and understand vasospastic angina. A tough call as vasospastic angina is rarer than microvascular angina.
You might have to ask for a second opinion from another Cardiologist.
Perhaps ask for Cardiac rehab, exercise is important.
I hope you are able to access the ongoing support and care you need.
Thank you so much for all the information and support. I don’t think I’d have understood much about it all before you sent links to all the information across in the early days of my journey. It helped me immensely. I agree, it seems to be little understood and rightly or wrong a lot seems to be deduced from a clear angiogram. I kind of felt left adrift after that. But my GP was brilliant and didn’t let it lie. Especially when I ended up back in A&E and they finally caught an ECG reading.
How did you get the diagnosis of vasospastic vs microvascular angina? How does the testing process differ?
I feel like I have an elephant sat on my chest on and off. Currently more on than off.
The pharmacist is trying to help where the GPs are gaslighting. They got me some NO spray and it's lifted some of the elephant effect and I experienced it in a radial pattern from the chest centre. One spray helps mid chest, a second up to the neck. But I can't do anything with the banging headache anyway. Lol.
What's weird is that some days and times there's no elephant and I can breathe OK without any SOB.
Hello,My Vasospastic angina was confirmed by an angiogram with acetylcholine.
Microvascular dysfunction can be diagnosed by a perfusion MRI or during an angiogram when they measure the coronary flow reserve or resistance to the blood flowing in the smaller blood vessels.
Microvascular dysfunction and vasospastic angina are types of Non-Obstructive coronary artery disease, also known as Angina non obstructive coronary arteries ANOCA.
Unfortunately the testing for these conditions are not widely available as yet. However they will be adopted in the future.
Have you been seen by a Cardiologist or had any investigations yet?
I had a nuclear perfusion test last month but no results are back. I'm not sure if that's the same as you had? It involved a cannula and then squirting in a vasodilator and a nuclear dye. I wasn't told specifically which chemicals they were. After that I sat in a machine which did an MRI.
I asked what it was achieving and the machine operator explained that it creates an image of actual blood flow rather than the structure of the heart. Sort of' water in the river' rather than the pipework containing it.
Currently SOB and fatigue are the biggest challenges for me. Occasionally my heart does whacky things and it feels like it's fluttering or another version is beating randomly irregularly. (I have a 'normal for me' arrhythmia with ectopic beats and which is completely different.)
I had a phone appointment with a cardiologist about 18 months ago for Long Covid. I am a first waver and nothing was understood at the time. Nothing more has been forthcoming from that cardiologist but they were kind and reached out to me in the first place. I had some lung tests ordered by them which show that my lungs recovered and are working very well indeed.
It's a cardiologist from A&E who ordered the nuclear perfusion test. I think I've been carted off by ambulance about 3 times due to chest pains.
I find it difficult to answer questions like 'does it feel like there's a band around your chest.' No. It feels like there's an elephant sitting on it, or like my chest cavity has been scooped out, or like I'm being 'gently strangled.'
I tried the NO spray and it did lift the SOB a bit but also knocked me so hard it took over a day to get over the BP drop and headache. Couldn't get out of bed. The first spray lifted a bit of SOB from the centre of my chest and a second just left the strangled feeling a bit milder.
I'm wondering how you are doing now and what's changed, if anything?
Also, when you had the perfusion test, did you do it with exercise or vasodilation?
I had a vasodilator injection and while I felt awful during the test, for the rest of the day I felt fantastic. No SOB, my body felt right. I'm wondering if that is a clue to anything?
I've been waiting for several weeks for the results but NHS is very very slow.
Sorry it’s taken so long to reply. I felt ok after the tests. I wouldn’t say fantastic, but no adverse side effects as such. I had the vasodilation. The waiting game is the bit that gets you thinking and guessing, bit of a nightmare isn’t it.
It took a while for my test results to come through. I’m still waiting to be seen by the cardiologist. I’m busy helping my parents at the moment, but when I get a minute I will be following this up as I have specific questions in relation to medication, travel, long term prognosis etc. I also want a copy of my results. My GP just received a letter confirming diagnosis and a line that basically said stick to the meds she’ll be seen by a cardiologist in a follow up appointment. To be honest my experience of the Cardiology team hasn’t been great. But I guess that’s down to the pressure they’ve been up against in the last two years. There’s been no guidance at all, in relation to managing the condition or what may have caused it, if there’s anything I can do to reverse it.
Milkfairy on this forum, and all other contributors have been far more helpful and I’ve basically done my own research using the BHF and resources provided by Milkfairy.
I’m normally quite a positive person. But I’ve had my moments. Battling for diagnosis, feeling like I’ve had to prove my case and the waiting game has effected me enormously. I stopped drinking alcohol completely when I started taking Isorobide Mononitrate a year or so ago, through fear, this resulted in me becoming a bit antisocial. I had to battle with my mental health where the fear factor is concerned. I also get very tired at night and my ankles swell. Not by much, its worse in heat. I think the tiredness is down to the meds - calcium channel blockers.
But I shouldn’t really complain as I don’t get the chest pain unless I’m fighting a cold or other nasty. And then it’s what I call niggles rather than anything resulting in the hospital trips of the past.
I hope your results come through soon and I hope it’s good news. Hopefully my follow up will also come through soon. xx
You actually prompted me to pick up the phone and make the call to Cardiology. I then got talking to a really informative and very helpful member of the team who has just answered a lot of my questions in a 15 minute call. I think that was just sheer luck but appreciated all the same! I’m still on their list. But it’s answered one question that had been really bothering me. I did wonder if there was any long lasting damage from a particularly nasty angina episode that resulted in my first trip to A&E. Apparently only an echocardiogram would provide them with a definitive answer to that. But he did provide a bit of reassurance on that front as well.
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