Mvd & cardiologists,

[Griff-64]

Hi all, I've not been on here in a very long time but thought I'd share this, as I'm so angry with the cardiologist I had the misfortune to have an appointment with a few days ago, he left me wishing I hadn't bothered.

I had an angiogram about 6years ago after suffering chest pain and shortness of breath, showing the signs of angina.

During the angiogram I suffered intense chest pain on injection, like having a heart attack, the doctor made no comments but I later discovered I didn't have blocked arteries, but a speculative diagnosis was made of small vessel disease.

I found it very confusing that so many names are given to it, including microvascular angina.

My doctor has been treating me for it with various drugs, since that time I've suffered hypertension and the last couple of years, type 2 diabetes, all of which I'm medicated for, so far, straight forward and under control.

So, a few months ago I started waking with chest pain and on checking my BP, found it was far too high, (183/133 gave me the most intense chest pain) meds would usually deal with it slowly, gtn worked sometimes but not always, and often I'd be left with a dull ache in my chest for hours. Any exertion would cause pain and breathlessness. These symptoms continued for a few weeks then returned to normal and under control.

An appointment was made with the cardiologist, who was the list holder at the local hospital, (a major West country one)

His attitude from the start was dismissive and arrogant.

He'd already decided I didn't have angina of any type as it didn't behave in that way, and my problem was probably indigestion..

The consultation over, I left feeling angry and rather depressed. He'd totally dismissed the last 6 years of my life.

Since then, I've found paperwork relating to my angiogram results and rapid access chest pain clinic, with mentions of small vessel desease, and just read an article on here which describes exactly what I've suffered.

I though mvd/small vessel disease, call it what you will was now recognised by doctors, cardiologists etc, seems I was sadly mistaken.

I'd be interested to hear if anyone else has had problems with not being believed.

[Chappychap]

Under NHS guidelines you're entitled to have a request for a second opinion considered. If you're unhappy with a specialist's diagnosis then it's probably a sensible courtesy to ask your doctor to explain that diagnosis to you first.

However, if that doesn't satisfy you then don't hesitate to go down the second opinion route, there are very good reasons why it's there as an option!

You'll find all the details here,

nhs.uk/common-health-questi...

[Griff-64 in reply to Chappychap]

Chappychap, thank you for the advice. That may well be the course I take, but go fully prepared next time with evidence that the condition exists.

I wasn't expecting to talk to an "expert" who didn't believe me, and someone who actually said it's impossible to prove. It totally threw me.

I deal with health conditions every day, caring for my partner who has ms, muscular dystrophy, COPD, silent aspiration and all the problems associated with those, so I'm pretty busy and my health takes a back seat, but I've never had this type of response from anyone in all the consultations she's been to.

I have however contacted PALS on her behalf for mistreatment, and they were excellent.

Doctor's appointment next for me.

[Hidden]

"His attitude from the start was dismissive and arrogant."

"He'd already decided I didn't have angina of any type as it didn't behave in that way, and my problem was probably indigestion.."

I come to believe (strongly) that this is extremely common. Extremely should be in bold and in highlight.

I chose to go back to the old hospital, which is RBH, a well-reputed place to go to.

The consultant was dismissive. He took some blood pressure to "confirm" that all was well. However, he offered tests. In a nutshell, cardiology is geared towards those who had permanently blocked arteries. Anything other than that, "we are not sure, I'm too busy to waste my time on you" "Just come to me when you can show me the blocked artery to sort out".

[Griff-64 in reply to Hidden]

Autumnsonnet, reading that cheered me up a little, I got the same impression from the start. Because the angiogram showed nothing, they show no interest at all.

As you said, "I'm too busy to waste my time on you" I've always felt that.

[CretanBob in reply to Hidden]

Literally trying to put you in a box! . I've given up trying to get them to listen. Merry Christmas by the way!

[Ab14e]

Yes nineteen years ago was when I was first diagnosed with AF but my treatment by the hospital and our GP was not good as if I was a hypochondriac because

I became so out of breath when doing the stress E.C .G I couldn't completely it .so was just given some beta blockers and aspirin and more or less left to get on with it even when I had several blackouts one GP told me not to walk to near the edge of the cliffs .After ten years we moved to a different area and was treated so different I have now had a pacemaker for the past eight years and am on apixaban yes do ask for a second opinion wish I had consultant at this hospital could not believe my treatment good luck

Hope all goes well for you

[Griff-64 in reply to Ab14e]

ab14e thank you.

I can't imagine how basic the treatment must have been that far back, and the advice, laughable.

My 93 y o neighbour was told by her GP to turn round slowly when she said she was suffering dizziness.

[bantam12]

Yep I've had the same dismissive experiences, diagnosed with micro vascular angina then not, symptoms totally ignored and told to go away, I have yet another appt in a couple of weeks because now my BNP is raised but I dare say it will be a waste of time and parking money 😞

[Griff-64 in reply to bantam12]

Bantam12, that's just how I felt after my appointment, what's the point! But now I'm more determined than ever to put things right.

I will go for a second opinion if I have to and I'm going to print off every bit of evidence I can find to back me up.

I'll certainly be prepared for anything next time.

[Milkfairy Heart Star]

Hi Griff-64

Sadly your story is all too familiar.

Yes there is a growing awareness of Vasospastic and Microvascular angina.

The BHF have some information on the website about MVA and will be updating the information about Vasospastic angina in the New Year.

bhf.org.uk/informationsuppo...

bhf.org.uk/informationsuppo...

mdedge.com/cardiology/artic...

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

3 of the 4 finalists of the BCIS Young Investigator award are researching MVA. It was won by the research fellow of a leading BHF researcher into Microvascular dysfunction.

There is active research being carried out and a growing interest in this field.

Unfortunately there is a problem with Cardiologists not being up to date.

Do contact PALS and ask for the Cardiology department to recognise new research and provide you with the care you need.

The Cardiologist you saw has a professional responsibility to up date their practice and according to the NHS Constitution to treat you with respect and dignity.

[Griff-64 in reply to Milkfairy]

Milkfairy, thank you for the info and links. And PALS is a definite, I found them very helpful with another problem in the past.

I absolutely agree that everyone should be treated with dignity and respect.

One thing I didn't mention in my original post was that there were 2 other people in the consultation room with the cardiologist, neither of which were introduced, or participated in the discussion. I've no idea who they were or why they were there. I guess I didn't need to know, but PALS will, and they'll tell me.

[Hidden in reply to Milkfairy]

It's all very odd. Unless you kindly informed us re. this difficult condition, nobody knew we were being "fobbed off" and treated like children in their clinic up and down the country.

The Cardiology consultant at the RBH was actually said to be "MV" specialist.

RBH is one of the well-known cardiac places.

The consultant was utterly and vocally against this diagnostic procedure (that Prof Berry recommends).

I took an article on Prof Berry with me; the consultant took it. He must have known who Prof Berry was and what he was well known for.

It is a shame that Prof berry is in Scotland.

Good luck, Griff-64.

Please keep us updated on any progress!

Wishing you well and thank you for sharing.

[Griff-64 in reply to Hidden]

Autumnsonnet, thank you. We shouldn't have to rely on luck but sadly, it all depends on the cardiologist. One thing is certain, I'll never see him again.

I will post updates as they happen.

[Alessa69 in reply to Griff-64]

As a 40 something woman I struggled for 20 years to be taken seriously at RBH , because my symptoms were quite Random, I worked at altitude in a job that put my heart under a lot of strain& I used to exercise a lot( this was with private consultations) I didn’t fit a pattern, but was getting progressively worse! After my GP managed to catch an episode of SVT on tape, during a chest infection, I was offered ablation , which I dragged my heels over ., until another major episode, 6 months later. They were rather surprised when they had to re-start me 3 times, I had AFib not SVT. Don’t give up, keep on advocating for yourself!!

[Griff-64 in reply to Alessa69]

Thank you for the support. Advocating for myself seems to be making me unpopular with some, but I'd rather that than do nothing at all

[Alessa69 in reply to Griff-64]

Am sure that you probably already know about Dr Sanjay Gupta and his York Cardiology site? I have found such fantastic info there, very informative. What a great guy and decent human being to share his knowledge in such a human way ! It was a God send to me last Sept after ablation

[Griff-64 in reply to Griff-64]

I'm wading my way through a few articles and making notes. That want one I was aware of but thank you, I will check it out

[Milkfairy Heart Star in reply to Griff-64]

Dr Sanjay Gupta is great however he persists in saying that Microvascular angina is harmless.

I did send him some research articles including the BHF info and asked him to update his information....I am still waiting.

When you watch his presentation can you say if he had updated it?

[bee2 in reply to Milkfairy]

Thank you for the links Milkfairy that last one will maybe explain why my January appointment with Prof Berry was cancelled. He is the only cardiologist who has told me he believes my pain. I had another Heart Attack last Tues and because under Prof Berry I felt believed by the cardiologists who treated me.

[Moonflower76]

I also suffered for years with angina attacks with no nitroglycerine to get through it and doctors fobbing me off basically. Finally I was referred to a doctor who specialises in MVD and Prinzmetal . I had an angiogram that showed some spasm of the arteries and a cardiac MRI that showed a perfusion deficit (lack of blood flow to the heart) and was diagnosed with MVD and spasm. I find the nitro helps me (patches and spray) and the calcium channel blockers. I am also on ranolazine. Sadly that doctor has now retired but am under a new doctor that seems to understand. My GP still does not get it at all.

[Griff-64]

Moonflower, I wasn't aware of the existence of spasms till I found an article on here yesterday, it fits perfectly with what has been happening lately, and the fact that gtn doesn't always work.

Luckily, my GP listens, but trying to get an appointment...., It'll probably take a month unless I'm prepared to see another one.

[Poonie]

Good Morning Griff. I also had a very frustrating appt with a cardiologist. I had an angiogram in April which luckily showed I had no heart disease at all. My arteries were all fine and I had no idea why I had incredinble chest pain and shortness of breath and dizziness. I was given a 48hr heart monitor to wear etc. I then went to see the cardiologist in September for a follow up. After waiting to see him for forty minutes past my appt time! He dismissed me as having no problems and it was probably indigestion. I have since had another atrial fibrillation episode. I know that I am reasonably healthy and no symptoms to help him but it is their attitude that seems to say “stupid person, wasting our time for a bit of indigestion” that upsets me and stops me calling an ambulance when I am really unwell.

[Griff-64 in reply to Poonie]

Good morning Loonie, and merry Christmas,

Have you got the same cardiologist as me?

That's how I was left feeling, along with anger and frustration.

I was kept waiting an hour past my appointment time with no apologies, and there were 2 other people in the room, in hospital scrubs, no introduction, they took no part but just stood listening. No idea why they were there, one in her 40's, one in his 50's I'd guess.

This appointment was a week ago and I'm still stunned by it, left in limbo and wondering what my GP's view is going to be

[Griff-64 in reply to Poonie]

Oops, excuse the spell checker altering your name Poonie

[Poonie in reply to Griff-64]

Made me laugh, you are about right with the Freudian slip. Loonie is about right.

[GrannyE]

I am afraid I know nothing about what you are going through but I totally sympathise. I too have suffered from arrogant doctors ‘specialsts’ etc completely misdiagnosing me and have had to spend huge amounts of time researching and self diagnosing, which has turned out to be right every time, and the so called experts wrong. I am so sorry you are having theses horrible problems. I think choppychap is absolutely right. You need to have a second opinion ASAP. You cannot just sit back and allow things to carry on like this.

Stress makes everything worse so enjoy Christmas and may 2019 be better for you.

[Griff-64 in reply to GrannyE]

Thank you GrannyE.

I've decided to follow the advice given, go see my doctor and ask her opinion on the result given. She's always been sympathetic to my condition luckily.

I'm going to ask for a second opinion from cardiology, which will take time, and I'll make sure I keep notes and download as much info as I can to take with me.

I'll also write to PALS and explain what happened at my last appointment.

Even if I don't get a diagnosis of mvd, I won't accept that it's possibly indigestion,

So I'm going to be busy

[GrannyE in reply to Griff-64]

Well done. Good luck. Being busy doing something positive to help yourself is good for you. I am a great believer in finding out as much as possible

[Alessa69 in reply to Griff-64]

Somewhere, on here, there is an info video from Dr Sanjay Gupta( York Cardiology site) about the Vagal nerve and artery spasms etc . Finding this site has been a Godsend for me after an Ablation last Sept. There does seem to be a link with gastro problems causing heart rythmn issues or it could be Vice Versa, you need to read through it all. Don’t let them dismiss your concerns out of hand

[Manhattan1]

about 2 years ago i asked the gp if she could refer me for a stress exercise test at my local hospital regarding ongoing chest pain.. a few years earlier a cardiac nurse had put it down to ‘gut problems ‘.. after my request i received a letter to attend the clinic of a cardiologist!.. was actually very surprised as i had just requested a stress test..was also surprised at how pleasant the cardiologist was😀.. as soon as i went in he started talking about MVA and even drew diagrams to explain that because the arteries relating to MVA were so tiny that stents were impossible and that the only alternative was medication.. this diagnosis was without any tests.. i’m just so grateful that this particular Cardiologist was well versed in MVA symptoms and didn’t dismiss it as indigestion

[Griff-64]

I think we need to know where your cardiologist is, so we can all get referred to him 👍

[GrannyE]

You poor thing. It is desperate when doctors don’t believe you and are dismissive. It leaves you feeling so helpless. 2nd opinion vital. Good luck