Myocardial bridge

[Tricky88]

Diagnosed with a myocardial bridge in Sept 2021 after an NSTEMI .

I was admitted to hospital with an NSTEMI in Sept 2021

The discovered the bridge while doing a coronary angiogram.

They inflated a drug elated ballon in the bridge to dissolve the blockage.

Put me on Zemtard 180xl , statins and Ramipril and clopidogral ( for 1year)

This seemed to work for a while but 6months later back to all the symptoms as before .

The last month or so been in A&E nearly once a week, with diagnosis from A&E doctors, POTS , at limit of drugs only bypass now but your not at that stage, coronary artery spasms and Acute coronary syndrome.

These doctors have never heard of a bridge .

I have a referral from my Doctor to cardiology as there has never been a plan or any formal diagnosis except for the myocardial bridge and angina and may get spasms .

Seem like I am stuck in limbo and anxiety taken over .

[Tos92]

Hi Tricky88.

Really sorry to hear about your experience. I have a similar story. I had an NSTEMI which was triggered by a coronary spasm in Jan 2022. Upon investigation via angiogram, a myocardial bridge was found.

I also haven’t had much luck with cardiologists treating my myocardial bridge. However, there is a specialist based in London that deals with myocardial bridges that has more knowledge of this in comparison to most I believe. There is another user on here,  Hidden who may be able to help you further with some advice on MBs.

Sometimes surgery is needed to unroof the myocardial bridge but that is based on things like the depth and size of it.

I’m still under investigation, but there are other users on here who also suffer with coronary spasms like us.  Milkfairy maybe able to provide you with some more advice regarding spasms and prinzmetal angina.

Wish you all the best of luck!

[Tricky88 in reply to Tos92]

Hi Tos92

Sorry to hear you are going through similar thing .

I know of the specialist in London I sent him a copy of my angiogram which results were but on to disc for me . He was saying that the angiogram was a temporary fix and would revert to original state in 6 months which it did .

I belong to the FB page and see unroofing is the answer else where in the world .

Only thing I have been told is bypass but don’t think that is successful something about competitive flow.

Think I have always has spasms , which caused the partial blockage in my lad block and result in an nstemi, but they are getting worse and palpitations and pvc’s .

But no formal diagnosis on coronary artery spasms .

[Milkfairy Heart Star in reply to Tricky88]

HelloTricky88

I am sorry to hear you have a myocardial bridge along with coronary vasospasms.

It is very much a niche club that nobody really wants to belong to.

I have lived with coronary vasospasms, vasospastic angina for over a decade. I was admitted to hospital with a suspected heart attack and told incorrectly that I couldn't be having a heart attack or angina because my coronary arteries were unblocked .

Over the years the awareness of coronary vasospasms has increased. However, I feel perhaps myocardial bridges are still not understood or acknowledged at the moment just like coronary vasospasms were in the past.

I was diagnosed by an angiogram using acetylcholine during which I had spontaneous and acetylcholine induced coronary vasospasms.

As far as I am aware there really is only one expert Cardiologist interested in diagnosing myocardial bridges working at Hammersmith Hospital in London.

Unroofing doesn't seem to be offered either in many if any NHS centres.

You may find this information helpful about Vasospastic angina the term now more commonly used rather than Prinzmetal angina.

bhf.org.uk/informationsuppo....

There is also this website created by 4 patients with over 50 years combined experience of living with non obstructive coronary artery disease NOCAD.

internationalheartspasmsall...

Hopefully Hidden will be along to share their experiences with you too.

[Tricky88 in reply to Milkfairy]

Thank you for the links

[Tos92 in reply to Tricky88]

Most hospitals have something called PALS (patient advice and liaison service). If you contact them at your local hospital and just explain that you remain symptomatic and would like further testing as you’re very concerned, they might be able to help. I believe it’s protocol for them to look into every query and complaint that they get. That’s the best advice I could really offer for you right now.

I’m sorry I couldn’t be of further help!

[Tricky88 in reply to Tos92]

I will look in to it

Thank you

[Milkfairy Heart Star in reply to Tos92]

I wish it was that simple!

I have made several formal complaints about my care over the years. However it's not easy to get a full apology or change in practice.

Very few Cardiologists have the appropriate skills to carry out the very specialised testing required to diagnose non obstructive coronary artery disease NOCAD or myocardial bridges. Nor is there the understanding of how to treat us as a group of patients.

I had to seek out a specialist to carry out the testing I needed.

I have a confirmed diagnosis but that's just the start of the journey.

My vasospastic angina is resistant to treatment. I end up in hospital at least once a year for treatment with IV GTN and morphine when I run out of resilience to manage my frequent episodes of chest pain and other symptoms at home.

I do now have a supportive Cardiologist who I can contact as necessary.

I also have a careplan to guide the staff how to care for me when I am admitted.

There has been a sea change recently and I am now greeted with 'oh you're Prof's special patient '

My advice is to seek out a Cardiologist at your local hospital with whom you can work together, with mutual respect.

It make take sometime. Somebody once said you have to kiss alot of toads before you find your Prince 😉

[Tos92 in reply to Milkfairy]

I’m sorry you had to go through all of that Milkfairy . I’m happy to hear your care plan has improved and I suppose that also provides some hope for me and Tricky88 to get the right treatment eventually, though it may arrive later than sooner!

I also feel like I’m resistant to my current treatment for my angina however, I know there are still a range of drugs that I can try which the BHF helpline informed me about the other day when you kindly provided their contact details. Tricky88 you may also benefit from talking to a cardiac nurse. I have supplied the same number in the link below.

bhf.org.uk/informationsuppo...

Thanks for the advice and sharing your experience Milkfairy !

[Tricky88 in reply to Milkfairy]

I have never had a care plan all they say is one thing listen to your body.

11th Jan visit to A&E the doctor there spoke to the pain nurse, she said all and everything I am experiencing is down to my bridge the only doctor to say that but not a cardiologist.

[Milkfairy Heart Star in reply to Tricky88]

I asked for a careplan as part of the resolution of my formal complaint about my poor experiences as a patient.

It was co produced by a multidisciplinary team and myself.

The Pain Team, Cardiologist and Clinical Psychologist who specialises in trauma as I have PTSD as a result of my past experiences.

Have you had any testing to confirm whether you have coronary vasospasms?

I had a specialised angiogram to diagnose my vasospastic angina.

Perhaps ask to be referred to a Cardiologist who understands microvascular dysfunction, vasospastic angina and myocardial bridges.

You may need to travel.

[Tricky88 in reply to Milkfairy]

no to any tests confirming coronary vasospasms.

I have just received a referral today just got to book it

[Milkfairy Heart Star in reply to Tricky88]

Do you have a choice of where you can go?

[Tricky88 in reply to Milkfairy]

yes I do choice of 6 in somerset

[Milkfairy Heart Star in reply to Tricky88]

Maybe do some research about the Cardiologists and see who has an interest in non obstructive coronary artery disease.

You may need to go to a larger hospital with a heart attack centre.

My Cardiologist is a Prof of Interventional Cardiology at a large London teaching hospital.

I had my care transfered from a local District hospital because the Cardiologists didn't have the knowledge how to care for me.

[Tricky88 in reply to Milkfairy]

Found a cardiologist that specialises in NOCAD . The hospital was on my list for referral but no appointments.

So gone else where , we’ll only one with appointments, at that appointment will see if I can get referred to the cardiologist that specialises in NOCAD

[Milkfairy Heart Star in reply to Tricky88]

Excellent news.Do say how you get on.

[Hidden]

hello

I would echo   Milkfairy ’s words above regards the niche nature of both conditions and the limited knowledge about bridges. You’ve also pretty much covered it in your response to   Tos92

The bridge was “identified” on Ct scan and first angiogram a year ago but they were adamant not cause of angina.

It was a year later when diagnosed as the bridge impacting blood flow on a recent angiogram with dobutamine / IVUS. I think this is the key test to determine whether bridge is the culprit. I was also tested with adenosine which was negative for microvascular dysfunction . But acetylcholine is the gold standard I understand for spasms etc.

I look back and recognise I have been very fortunate to have been diagnosed within a year and that comes down to my local hospital cardiologist acknowledging the bridge as potentially symptomatic and then referring me to the London cardiologist mentioned above for testing.

As a result - back on a med I had already tried last year on a lower dose (didn’t solve angina and caused side effects) but now on a higher dose. and then consideration of a possible anti depressant to work on nerves to mask pain. If this medical plan does not work surgery may be re- considered.

But I was verbally advised highly unlikely surgery would be available and unlikely to resolve my symptoms anyway and could cause damage.

Hope you get a diagnosis for both issues. Both issues will require a significant level of self advocation to push for the right tests and to be acknowledged.

Good luck

[Tricky88 in reply to Hidden]

Fingers crossed as only 2x stress tests and nothing else.

Only time coronary artery spasms been spoken of was A&E doctor recently.

[Golf1985 in reply to Hidden]

hello may I ask what meds you are taking just come out of hospital we’re bridge was found but they say not causing my daily pains as stress test and stress mri we’re fine but I know it is,tried lots of meds they tried me on different nitrates but they seem to make my pains worse,thanks again

[Golf1985 in reply to Hidden]

hello may I ask what meds you are taking just come out of hospital we’re bridge was found but they say not causing my daily pains as stress test and stress mri we’re fine but I know it is,tried lots of meds they tried me on different nitrates but they seem to make my pains worse,thanks again

Reply

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[Tos92 in reply to Golf1985]

This member is no longer available Golf1985 hence, why it is says “hidden” next to their name. If I remember correctly, I believe this member had trialled a number of medications and found that nothing was particularly helpful in reducing their symptoms. Sorry it’s not of much help to you.

[Tricky88 in reply to Golf1985]

Hi sorry late reply

My meds are

Zemtard 180xl

Ramipril

Rosuvastatin

Asprin

I tried nitrates but that made things worse.

I was on a beta blocker at first but it was changed to Zemtard 120xl then upped to 180xl , Zemtard is a calcium channel blocker which is for spasms in my case .

[Golf1985 in reply to Tricky88]

it’s ok any help is appreciated,nitrates are a no for me they gave me isorb last week and the pressure was immense and that was after knowing the bridge but this hospital is terrible and no knowledge of them,I have pots but calcium blockers make it worse it’s very strange,and I’ve tried ramapril that made it bad,and even beta blockers are weird as many don’t get my base heart rate down they took me off propanolol to bisopranolol and went up it confused them but don’t take much,so back to prop and made it a slow release but I’m also aware there contradicting to spasm but have no choice it’s so hard

[Tricky88 in reply to Golf1985]

Sorry to hear meds are not doing much , I don’t have pots and have been managing and putting up with symptoms for so long on these meds but something is now changing don’t know if my body is getting used to Zemtard 180xl , I got an option to increase to 240xl but told that’s the limit nothing else after that increase.

[Golf1985 in reply to Tricky88]

I’m the same been dealing with it daily for 12 years but last 2 years it’s getting worse especially the pains over shoulder blades and left sided pains becoming unbearable and it’s so hard as others may get relief from a spay of gtn spay here and there we have no relief it’s souls destroying,I’m going to see the private consultant tomoz to look at my angiogram and hopefully start the process to maybe see a surgeon but listening to people who know more they don’t like doing it or rarely do it here

[Motherofdreams]

As a fellow MB sufferer I understand how you feel.It has been 12 months since my MB was found after having an angiogram. At first I was told it was begnin and wasn’t the cause of my chest pains and shortest of breath.Fast forward several months frequent visit to A&E and further testing the cardiologist rings me to say the MRI scan has shown I’ve had a heart attack and he has now decided my problems are caused by the MB.

It is now a year since I saw the cardiologist on the CC ward I have had three telephone appt and one of those was only because of an email I sent to him complaining about my lack of care.

I get frequent episodes of chest pain which the cardiologist said I should go to A&E The hospital I go to declared a critical incident this week because of the numbers attending A&E .I have stopped going as other people have said there is no understanding of it.

I don’t understand why in the Uk there is a lack of knowledge and treatment for people who suffer from Myocardial Bridging.

[Milkfairy Heart Star in reply to Motherofdreams]

"I don’t understand why in the Uk there is a lack of knowledge and treatment for people who suffer from Myocardial Bridging."

There is sadly a group of less common heart conditions which seem to be under recognised, under diagnosed, under treated and under studied.

As patients we are left out in the wilderness.

I don't expect the staff to understand my vasospastic angina.

I do however expect them to read and follow my care plan which also includes a link to the information on the BHF website and other resources.

My care over the many years and 15 admissions for treatment to stabilise my coronary vasospasms has improved.

Partially due to awareness about the condition growing due to research.

I also have a supportive Cardiologist whom I can contact by email as necessary.

Coronary vasospasms are often associated with myocardial bridges.

Have you been offered any testing to determine whether coronary vasospasms are playing a part in causing your chest pain?

A severe coronary vasospasm can cause a heart attack, a Myocardial Infarction non obstructive coronary arteries MINOCA.

heartresearch.org.uk/nocad-...

The problem is there is no agreement amongst Cardiologists whether myocardial bridges are innocent bystanders or the culprit.

Have you considered contacting the BHF and asking them to provide some information about myocardial bridges on their website ?

Maybe ask to be referred to a specialist who understands Myocardial bridges, microvascular dysfunction and coronary vasospasms?

[Tricky88 in reply to Milkfairy]

Upto now no testing for coronary vasospasm.

Only A&E doctor said that was the cause on 29th Jan 2023.

[Milkfairy Heart Star in reply to Tricky88]

You probably need to see a Cardiologist who understands the condition.

There are now several centres carrying out the testing required to confirm a diagnosis of coronary vasospasms.

Where are you based?

[Tricky88 in reply to Milkfairy]

I am based in Somerset .

[Antique50]

Torbay Hospital found I had a myocardial bridge about 7 years ago after an angiogram. Since then I have had at least 3 other angiograms without it being noticed. I have mentioned it several times to heart specialists who said it was nothing to worry about it. It seems you are born with it (an artery going through your heart instead of round it). I don’t appear to have any symptoms, although as I am waiting for a mitral valve repair I always mention it as cutting into the heart with an unnoticed artery could be a bit worrying. It’s being taken a lot more seriously in the USA now., and pictures of it are on Google. Hope this helps.

[Motherofdreams]

I am going away to Australia in a few weeks and when I get back I am going to ask to be referred or pay private and get a better understanding of my conditionand if I am getting the correct treatment.

[Tos92 in reply to Motherofdreams]

Hi Motherofdreams .

I’m sorry to hear about your experience with MBs. I was recently diagnosed with it in Jan 2022 after it spasmed and triggered an NSTEMI. So I completely understand your frustration when it comes to U.K. cardiologists and doctors having a lack of knowledge about it and how to treat it as they still try to dismiss mine.

I’m just chiming in as I saw that you are flying to Australia. I’m due to fly on a 7 hour trip in April however, extremely anxious now knowing that I have the MB and coronary spasms. Could you possibly let me know how you get on with the flying and if it triggers any symptoms for you? If not, that is absolutely fine and I hope you have a great trip!

[Motherofdreams in reply to Tos92]

Yes I will let you know. Im ait worried about it myself but I’m putting it out of my mind. Fingers crossed everything will be ok.

[pjw17]

I had HA and stent in may 20In October 20 I started getting chest pains and a bit breathless. I've been to Aand E a few times with this but everything seems ok heart wise (ECGs etc).

Eventually after a couple of trips to GP re referred to cardiologist

Had angiogram and told I had MB from birth and wasn't causing my symptoms.

I accepted this as I was a competitive cyclist and heavy training and racing got my heart rate up to daft levels!!

My problems are supposed to be from pectoral muscle but MSK team and private physio massaging don't alleviate pain , I can still exercise moderately though.

I am now thinking it's MB causing this but when it comes on it lasts for 7/8 days ,which to me is infers muscle strain.

I'm not due anymore contact with cardiologist until June 24.