Thank you!: I'd like to thank all those... - British Heart Fou...

British Heart Foundation
18,953 members12,939 posts

Thank you!

Griff-64
Griff-64

I'd like to thank all those who commented on my last post. I was feeling a bit low after my appointment with a cardiologist.

Every comment made by you was positive and encouraging.

Since then, I've been searching for info and reading other people's posts on here. I'm staggered at how many people have been through similar experiences and symptoms dismissed as possible indigestion etc. My symptoms do not relate to indigestion in any way and I can often predict the onset of chest pain and breathlessness, one example being the short walk from the car park in RD&E, up a gentle slope to the entrance. One spray of gtn half way relieves it.

My cardiologist claimed that microvascular angina has never been proved and doesn't exist.

How arrogant of someone in his position to think he knows everything and dismisses the growing mountain of research into MVA.

I'm not prepared to accept what he said and will be taking this forward. I've had some good advice here.

I'll be seeing my doctor first and asking her opinion on MVA, she's always been supportive, so I'll ask for a second opinion.

I'll be totally prepared this time with lots of info printed off.

I'm also going to write to PALS, explaining my concerns after the appointment. Last time I wrote to them, they were very prompt to investigate my claims and admitted there had been faults in my partner's treatment.

Once again, thank you all.

18 Replies
oldestnewest

I am sorry you have been suffering so long without a diagnosis . I know the feeling , it took many years for me too. Actually I now have other vascular problems which are under investigation but I feel are not being taken seriously ( although they have seen part of whats wrong with ultrasound ) I just hope they find out before its too late . I suggest you go to see a doctor with some knowledge of MVD . Most cardioloists dont . Maybe you could travel to London. I saw Prof Collins at The Brompton and I also saw Prof Kaski at St Georges but he has retired now. I am sure there are others with experience with MVD , maybe the BHF will have some suggestions. There is also apparently a National Microvascular Angina Centre .Maybe you could have a cardiac MRI or an angiogram with acetycholine? The nitro should work if it is spasm or MVD but you may need more than a couple sprays ( maybe you need patches or pills too ) . Hang in there. It is difficult when something is rare or not much awareness of , doctors seem to not want to bother if its difficult to diagnose.

Thank you moonflower.

Although my doctor has always supported me, it could be she's playing it safe, I need a good chat with her.

Going to London from here would be difficult, but possible, I'm a full time carer for my partner, 24/7.

I've found all sorts of old dr's appointments and notes I made at the time, it's been interesting reading through them, how I was feeling.

It's not going to be a quick process but I'll keep at it till someone takes an interest.

And I agree with you about doctors not wanting to bother with it.

Hidden
Hidden
in reply to Griff-64

"And I agree with you about doctors not wanting to bother with it."

Then, they should just say. Instead, they openly blame the cause to be "indigestion", which is a really "stupid" thing to say, to patients, to put it bluntly.

If its not debilitating for you, take your time. Only you know your medical history and what symptoms you are experiencing.

Milkfairy
MilkfairyHeart Star
in reply to Moonflower76

Hi Moonflower76

I am aware of the national refractory angina centre in the northwest but I don't think there is at yet a single Microvascular angina centre here in the UK.

It was one of Prof Juan Carlos Kaski's ambitions to establish such a centre sadly no one took over his work when he retired last year.

Hi Milkfairy

Yes I was not aware of it either until the doctor I saw last month at St Georges wrote in the letter to the GP that he could refer me to the National Microvascular Angina Centre. I must find out about it.

Milkfairy
MilkfairyHeart Star
in reply to Moonflower76

Please do pass on any information and tell us how you get on.

You may find that you are referred back to the Royal Brompton Hospital....

Hidden
Hidden

On other HU hubs, they tend to have a list of doctors with good reviews/feedback from patients. They are not open in public but discreetly circulated amongst patients.

As far as I am aware, MRI does not capture microvascular "inflammation" at all. I have seen posts, commenting their cardiac MRI showed MVA. It usually means, there was MVA by default, meaning, it is 'unseen' but it was assumed there was when there were obvious large artery issues.

Moonflower76
Moonflower76
in reply to Hidden

A cardiac MRI does not look for inflammation it looks for blood flow in the heart. If there is a lack of perfusion of the dye it can suggest some ischemia.

Hidden
Hidden
in reply to Moonflower76

In which part of cardiac vasculature are you referring to if you don't mind me asking this?

Moonflower76
Moonflower76
in reply to Hidden

I dont know maybe you could look it up. I had my test awhile ago but as far as I remember it was an endocardial perfusion deficit . I dont think it is looking at particular vessels like in an angiogram but more the blood flow to the whole heart. I think a myocardial perfusion scan which is a nuclear scan using radioactive dye can also look for blood flow in the heart.

Hidden
Hidden
in reply to Moonflower76

It was very kind of you to clarify.

I'm really so sorry to hear about the deficit.

My Cardiologist says, "we'll look at the vessels for you" by indicating another MRI, which did not help 2 years ago.

Really appreciated your very thoughtful reply.

Milkfairy
MilkfairyHeart Star
in reply to Hidden

Hi Autumnsonnet

Microvascular angina is the symptom of several underlying conditions such as Microvascular dysfunction.

Some blood vessels fail to dilate and are ' resistant ' detected by altered blood flow others lose their ability to dilate or constrict.

Some causes are detected by cardiac MRI others require an angiogram with acytelcholine.

A skilled Cardiologist who actively listens to their Patient can diagnose this condition without these tests. I was, my diagnosis was confirmed by an angiogram with acytelcholine.

Only 2 centres in the UK perform angiograms with acytelcholine.

Prof Peter Collins at the Royal Brompton Hospital has only recently adopted the term Microvascular angina and has carried out no recent research.

However there is interest amongst the younger researchers which was demonstrated at a prestigious professional award giving recently. 3 out of the 4 finalists for this award were researching Microvascular angina.

bcis.org.uk/news/bcis-resea...

Things have moved on so much since I first started on my adventure with my condition and Cardiologists!

But there is so much more work to be done!

Hidden
Hidden
in reply to Milkfairy

I recall that your "adventure" wasn't an easy one, lengthy and difficult. AND you had seen the "best" cardiologists. This says, something (read "a lot").

It would be best to be clear about diagnostic tests and their limitations i.e. CMRI. The cardio I had seen of late did not think MV issues will show up on MRI. He was honest about that. It's not sensitive enough. I wasn't particularly surprised by it. "But" as always, its useful to hear what others had encountered.

I only raised this in case some patients had seen this thread and assumed that MRI would show, only to find that it wasn't the case and badly disappointed e.g. wasted referral.

Milkfairy
MilkfairyHeart Star
in reply to Hidden

It is actually very interesting that all the latest research about MVA and Vasospastic angina is not taking place at the Royal Brompton Hospital. It's happening at St Thomas's, Oxford, Cambridge and Glasgow.

Prof Vanessa Ferreira and Dr Alex Liu at Oxford have developed an MRI technique that can detect some forms of MVA.

sciencedirect.com/science/a...

There is tendency within some very well established renowned centres to adopt a not invented here mentally so will reject any research not produced by their institution.

Hidden
Hidden
in reply to Milkfairy

"It is actually very interesting that all the latest research about MVA and Vasospastic angina is not taking place at the Royal Brompton Hospital."

Royal Brompton was definitely not good for MVA as I have found.

"Prof Vanessa Ferreira and Dr Alex Liu at Oxford"

Do they work at the frontline clinic, seeing patients, may I ask? Undiagnosed patients aren't too interested in research-levels, not that I mean to be rude or anything. Research is great, but when patients are suffering, patients need a cardiologist. Prof K is no longer working on the NHS. Not good for undiagnosed patients.

As for acetylcholine test, it must have some strict criteria that patients are required to meet before patients are even considered. Again, the research-level and frontline clinic seem to have some gaps. More information we can have, it would increase the chance to get the condition looked at on NHS, obviously.

Thank you.

Milkfairy
MilkfairyHeart Star
in reply to Hidden

Prof Vanessa Ferreira is part of this team

oxami.org.uk/meet-the-team/

Yes, I have seen some of the assumed best Cardiologists.

However I still have had the best care from my local Cardiologist at a ordinary district hospital. I refuse to be transferred to the care of another Cardiologist at the Heart attack centre where I go for my inpatient care.

Hidden
Hidden
in reply to Milkfairy

Thank you, MK.

Another uncharted territory.

Would be useful to have some feedback from other patients.

Without one, I personally won't even consider anybody now.

"Once bitten"..they say!

You may also like...