Help with diagnosis

[Nimbus1995]

My husband has had chest pain for 20+ years. He was initially diagnosed as having angina but when all investigations came back clear, he was "dismissed" by cardiologist and GP alike. His last appointment back then was with a registrar who said he thought it was coronary artery spasm but nothing was ever documented. While he was working, he had several episodes where an ambulance was called as he was having chest pain, but nothing ever showed and he was once treated very badly by an ambulance crew who said he was wasting their time. Understandably, he is now very reluctant to seek help and has managed his chest pain with GTN spray and rest over the years.

At the end of last year, he had a very bad episode lasting all morning and it knocked him off his feet for days. We saw his current GP who is much more understanding and who said that tests done 20 years ago were almost irrelevant and he ought to be seen again. So back to Cardiology he went for ECG and treadmill, which we could have said would be clear! Once again, he was told he should be reassured that he has not had a heart attack and carry on! No follow up.

Certainly since then, his pain is even more frequent, somewhat worse and also with occasional different distribution. His chest feels tighter, almost as if there's a band around it so he can't expand it. He finds that, if he has tightness or pain, his energy has gone and he is very short of breath. I can always hear in his voice when he is struggling as it sounds more strained. Various medications have been tried in the past but most unfortunately seem to trigger cluster headaches which he also suffers from.

We would ideally like to find someone who knows/has an interest in coronary artery spasm or microvascular angina to try and help us understand what is going on. It is significantly impacting on his life now. We live in Somerset but would travel.

We would be grateful for any help or guidance anyone can give

[Arthur1962]

I am 57 years old, over the past 5 years I have had 9 stents fitted all in the left anterior artery, in all this time and in each time when feeling unwell my ECG never showed anything abnormal and my bloods were always normal.

Nothing worse than knowing you are unwell but frightened to seek help , don’t ever be frightened, use the GTN if after 2 doses if no improvement seek help and always remember you can seek a second opinion.

[Nimbus1995 in reply to Arthur1962]

Thank you

[Calliope153]

Can you ask for a referral to Bristol Heart Institute?

[Nimbus1995 in reply to Calliope153]

I will look at that route. Thank you

[Milkfairy Heart Star]

Hi Nimbus1995

I live with Coronary vasospastic angina, I have vasospasms in my small vessels Microvascular angina and coronary arteries coronary artery spasms.

Both MVA and vasospastic angina are poorly understood and under recognised. However there is a growing awareness and understanding of the condition.

The BHF has this information about MVA and Vasospastic angina

bhf.org.uk/informationsuppo...

bhf.org.uk/informationsuppo...

There is about to be study into a possible treatment for MVA and vasospastic angina and Oxford is one of the centres taking part.

I suggest you ask your husband's Cardiologist to make contact with the trial team

clinicaltrials.gov/ct2/show...

[Nimbus1995 in reply to Milkfairy]

Thanks Milkfairy. Those are really useful links

[Hidden]

Hi Nimbus1995,

I have Microvascular Angina and your husband’s symptoms sound very similar to mine. I had to push and push to be referred to someone who could properly diagnose me (in my case I went to the Royal Brompton and was diagnosed by Professor Collins). Of course in your case it may not be the same diagnosis but you do need to investigate the possibility...it’s hard, but keep pushing and you will get there. Good luck!

[Milkfairy Heart Star in reply to Hidden]

MintTeaPlease

Have you asked why The Royal Brompton is not taking part in the drug trial into a possible new treatment for MVA?

Also the the Royal Brompton does not carry out angiograms with acetylcholine which is the diagnostic test for vasospastic angina.

The Royal Brompton focus is very much on MVA due to microvascular dysfunction rather than vasomotion disorders of the blood vessels.

I asked to be referred to a specialist in vasomotion disorders. I see a Cardiologist actively researching MVA and vasospastic angina at another London hospital.

[Hidden in reply to Milkfairy]

Thanks Milkfairy, I will email my consultant and ask!

[Milkfairy Heart Star in reply to Hidden]

Here are the details of the trial

clinicaltrials.gov/ct2/show...

[Tessie28]

Google the best person who treats this. See them privately and they will put you on to their own NHS list or further you on. A private cardiologist without tests is about 250 pounds. I had a detailed echocardiogram taken by my cardiologist. Cost a bit but explained it all to me. Passed me on to a great heart surgeon at Harefield. All in the space of 2 weeks. Of course I am still a beginner at this but it seems to me the least he needs is an angiogram. It makes me so cross. I know GP s etc are busy as are the heart clinics but that is simply not good enough. Good luck with hubby. He has a great wife behind him. Xx

[Milkfairy Heart Star in reply to Tessie28]

Tessie28

Unfortunately there are very few Cardiologists who have much understanding of Microvascular and Vasospastic angina.

We are the lost tribe of Cardiology!

MVA and VSA are complex conditions. They are very difficult to treat in some cases.

A portion of patients like myself have vasospasms that are resistant to treatment. Refractory angina.

My Cardiologist who is an expert into the condition does no private work. He devotes his time to research instead.

A routine angiogram will not be able to diagnose MVA or vasospastic angina.

My specialised angiogram with acetylcholine took 2 and half hours and there were 8 members of staff involved including the Professor who carried out the procedure.

This is when I am very grateful for the NHS !

[Tessie28]

Ah I see. I too am grateful for the NHS. But with my issue, which has become critical, I was able to see an excellent cardiologist very quickly. I'm not putting the NHS down but my condition which is congenital should have been found before I got to 60. These guys also work NHS.. In fact most of their work is NHS. But sad that with so many talented people in this country that noone is able to help this person. Oh and I make no apology for going private. But I see it can't help everyone.

[Calliope153 in reply to Tessie28]

After my heart attack I too was utterly amazed to be told I had a congenital heart condition having passed numerous medicals without a mention of a "strange" heartbeat. I was 63.

[Phil_London]

Hi, well I can understand that it's very disturbing and upsetting, I was not as bad bit had some similar experiences with an NSTEMI, no ECG change, no blood troponin difference until a mild HA, 4 vists with some discomfort and dizzy, knowing something was wrong and 4 times sent home. I guess the main decider is not the ECG in a lot of situations or bloods, it will be a detailed CT scan or angio, as maybe it is a very bad angina but not showing on ECGs as mine didnt either, I few threw a stress test and was running two weeks before I had an NSTEMI, the heart gets some blood/oxegen but not enough from what I understand, has he has a CT or MRI scan if not I would assume it's a must. Trust you find the route of the problem.