this is abit of a long post,at 25 years old I started suffering chest pains and ectopics after coming back of holiday,saw a cardiologist said everything was normal don’t worry ,these pains were daily and ruined my life nearly 13 years later I’ve seen 12 cardiologist and spent 15 thousand pounds having test I’ve had everything ,only test they wouldn’t do was angiogram as my age and other tests were all clear including ct angiogram x2,after reading posts on here especially milkfairy I knew it was either spasms and micro vascular dysfunction or spasm after paying to see an amazing young cardiologist who is expert in this field he started meds I tried them all noting helped after bugging him for a year he said I will do the provocation test at glenfield and il send you the Brompton in London as this isn’t right,on Thursday pains so bad I went a&e and refused to leaved till cardio took me in(spend thousands of hours in there and sent home)and because of his letter from the cardiologist about taking me to glenfield they said it’s up to you we can do angiogram it’s your choice but won’t find anything and we don’t have that tech,but i knew it was gona be found,went in the lab I said to the guy doing it before he even went in you will find a bridge and soon as dropped in my lad it was there I cried in relief but also knowing I was stuck with this,there trying more meds but I can’t tolerate most and stuff seems to make it worse,want to thank people on here for giving the info to ask questions and not be brushed off
never give up : this is abit of a long... - British Heart Fou...
never give up
Hi Golf1985
Welcome to your first post.
As you already know, my story is somewhat similar to yours.
I’m sorry to hear you’ve been in pain for 13 years. Unfortunately, as you know from your experience, myocardial bridging (MB) is rare, and one of the symptoms of this is coronary vasospasms and microvascular angina or dysfunction for some.
I was also turned away from A&E multiple times before my MB triggered a MINOCA last year which was seen spasming on an angiogram. Unfortunately, MB is not always taught, or considered in universities where students undergo degrees to work in the medical field. I have been in situations where I have had to explain/educate doctors on what an MB and a MINOCA (myocardial infarction in non-obstructed coronary arteries) is.
However, despite that, it is a good thing you now have confirmation that the bridge exists as this may help you get a treatment plan into motion.
It’s been just over a 1.5 years since the MINCOA, and almost 3 years that I’ve been symptomatic with the bridge on a daily basis.
A cardiologist which specialises in MBs and vasospasms would be the best way forward. I have PM’d you the name of one however, I also have a list of surgeons which perform unroofing surgery in the U.K. for MBs. I hope you can get an appointment with the cardiologist I mentioned to you, and hopefully, come to a conclusion on whether you will continue to take the medication route, or surgery depending on whether you are a candidate for unroofing.
Let us know how you get on.
Good luck.
Tos
Hello Golf,
It's a bitter sweet moment to get a diagnosis after such a long time.
I was so relieved when my angiogram with acetylcholine confirmed my diagnosis of vasospastic angina.
Knowing why I have my chestpain helps me psychologically cope.
The knowledge about Myocardial Infarction non obstructive coronary arteries MINOCA , as well as Ischaemia/ angina non obstructive coronary arteries INOCA/ ANOCA has certainly increased over the years.
These conditions are now included in the training curriculum of UK based Cardiologists.
The diagnosis in someways is just the start. Next is finding a Cardiologist who is able to support you.
I supect it may well be a process of trial an error to find the best combination of medication that will work best for you.
Has the Cardiologist suggested that you have a myocardial bridge which in some cases can be associated with coronary vasospasms?
Was the way the blood flows through your small blood vessels assessed?
Microvascular dysfunction diagnosed as well ?
Microvascular dysfunction isn't usually associated with myocardial bridges as it has a different pathological mechanism to coronary vasospasms.
There is alot of controversy about the effect on myocardial bridges on the function of the coronary blood vessels and the best approach of how to treat them.
The use of nitrates is unclear. Also there are different approaches in the US, Europe and the UK.
While there is a Cardiologist at the Hammersmith in London who carries out the appropriate testing on the NHS. Very few centres perform unroofing surgery in the UK on the NHS.
I suggest it's disengious to say otherwise.
Sometimes others pass off others and my knowledge as their own without giving credit to the source, so thank you for taking the time to acknowledge how the forum and I helped you gain the information to enable you to advocate for yourself.
Hi milk fairy after 12 years of research reading to find out why these symptoms were here I knew spasms were happening just from the pain,and also listening to you and building up knowledge,but 2 stress mri picked no microvessel dysfunction up and every ecg no changes or trop changes this what’s been weird,but I knew I’m in pain daily it’s horrendous every cardio has dismissed me I’ve mentioned bridges and they laughed as said ct would have seen it last one being 2021 so they missed it,the cardio guy thats taking me to glenfield next month only said yes to this test as I kept going back but prob no point doing that test,but I can’t tolerate meds like diltazem sent me tachycardia even worse and it should do the opposite,and Betablokers are contradictive as you know but only thing that controls my heart so trying isorb monitor are with them to see if help as still in hospital now
I am sorry you are in hospital at the moment. Bravo for being persistent, however it's really not great that you have had to work so hard to get your diagnosis.
I have had some moments with Cardiologists too over the years. One threw my careplan across the room and disputed my diagnosis🙄
There are other calcium channel blockers available, Isosorbide mononitrate, nicorandil or nitrate patches all relax the blood vessels.
Ranolazine, Angiotensin converting enzyme inhibitors,( ACE inhibitors), Angiotensin receptor blockers , ( ARBs), Ivabradine can be helpful.
It's what will work for you as an individual.
I also use a Transcutaneous electrical nerve stimulation TENS machine which helps to take the edge of the pain. Unfortunately I can't use it when I am in hospital as it interfers with the cardiac monitoring.
I hope you feel more comfortable soon.
tried nicorandil on Friday gave bad pressure so stopped and had ivravine in the past helped heart rate but not the pains and nothing helping,tried Ranolazine but seemed to work thro the spasms did,so frustrating but getting worse last 18 months
I am sorry you have joined me in the refractory angina club. This a club that nobody wants to join.
Ranolazine didn't help me either.
I was given a tiny dose of Candesartin and my BP plummeted same with Ramipril.
I am prescribed statins and an antiplatelet, clopidogrel.
I am top doses of Diltiazem, Isosorbide mononitrate and nicorandil.
I found keeping a log helped to identify my triggers which are the cold, mental, emotional and physical stress.
I also use breathing and relaxation techniques, Tai Chi and yoga all to help calm my automatic nervous system.
Are you able to work?
have been working through it all but it’s getting to bad now,lucky can afford to and have a little girl buts it’s ruined my life for last 12 years and being told there nothing wrong is the worst,yeah lots of triggers but don’t know weather it’s the compression of the bridge or the spasm as that’s defiantly there unmistakable pain,there trying to control my heart rate but also help spasm witch is hard as I need beta blockers or may try Ibravine again,funny enough the cardiologist who I saw yesterday who also refused to see me in January in his clinic said nothing is wrong and should do see somebody about muscle pain hasn’t come to see me today but my mum has been to see him as she works on the next ward and he didn’t know🤣
Educational to learn about this.Excellent explanations of difficult concepts and an awkward plight.Can i just ask probably on behalf of others too what a bridge is and what unroofing surgery is?
In simple terms, Myocardial bridging (MB) is a congenital heart defect. This is when an artery or arteries tunnel through the heart muscle, instead of sitting on the surface. For the most part, it is considered a benign condition and in fact, most people will have it their entire life time and never know as they did not become symptomatic.
Unfortunately for a minority, like myself and the OP, we do become symptomatic. The bridging causes compression which results in angina. It is also commonly associated with endothelial dysfunction (ED) and coronary artery spasms. It is possible however to have both ED and coronary spasms without an MB. Arrhythmias and syncope are also other symptoms that can arise as a result of having an MB though this isn’t an exhaustive list of the symptoms.
MB is under-recognised in the U.K. however, other countries such as the US are considered leaders in this condition. They have hospitals and cardiologists dedicated specifically for treating MBs. I have attached a link below from one of the leading hospitals in the US who are recognised for this which explains it in more detail. The BHF does not seem to have any information on this, otherwise I would’ve directed you there instead.
stanfordhealthcare.org/medi...
Unroofing surgery refers to removing the MB from the heart muscle in order to free the artery. This is in an effort to decrease symptoms that come from the compression for example. However, unroofing is not commonly done until the medication route has been explored first. Calcium channel blockers, beta blockers, aspirin and statins are often used but there is no “one size fits all” approach to MBs as some respond to medication, and others do not. Therefore, treatment plans are often tailored to meet individual needs of the patient.
Thank you for taking an interest and asking this question. I believe this is the first time since joining the forum that someone has asked about this that doesn’t have bridging. U.K. hospitals are slowly picking up on MBs being a possible cause for cardiovascular conditions. I’m hopeful that unroofing procedures and testing for MBs will become more widespread for those that need it in the near future as awareness of this increases.
Here's some other discussions of myocardial bridges on the forum from the past.
healthunlocked.com/search/p...
I suggest you contact the BHF directly via heartvoices@bhf.org.uk to raise the issue about the BHF website having no information about myocardial bridges.
I’m not sure why you have supplied me with information on previous posts on MBs, was that done in error? I have been a contributor to these myself, so I know they exist. Perhaps there’s been some confusion with what I said. I said I believe this is the first time someone without a bridge is asking the question since I’ve joined.
Thanks for the email.
hi Tos thank you for such a comprehensive and knowledgeable explanation of this condition. X
Wow, thank you for adding this reply , lots of info and really easy to follow.
it’s part of the artery that goes under heart muscle as should be on top and as the muscle contracts it squeezes it,ct angiogram should pick this up I’ve had to I payed for and neither did put I’ve got the recoding so I think he just didn’t look proply but still doesn’t help the daily pain and no good outcomes 🥹
I’m glad they found what was wrong.It’s such a relief when you know what it is.It’s such a shame that you have had to wait so long xx
We know our own bodies best. I was referred to a cardiologist but told I didn't fit the profile and was in normal ranges. 2 weeks later had the heart attack I feared was brewing! Hopefully you will now get the treatment you need, but what a horrible wait you have had
That's a bit harsh. If i had a complaint and no one knew what it was, and then i began to get a hint that it might be something unusual because of the persistent symptoms and what i'd read, but then these ideas of mine were dismissed by health professionals only for me to become even more convinced because of it's persistence but still not able to get anyone even to consider what i was saying.Only finally to a get a test showing that's what it was.Well i'd consider that knowledge hard won with years of pain and anxiety behind it, but then to have someone like me repeating it just because i'd read it here.I can see that would be galling.
hi. I wasn’t aware that we had to reference where we got our information when replying to posts. I wouldn’t feel put out if someone repeated information that I’d posted earlier without referencing me, I’d just be pleased that it was being used to help someone. I’m really not that precious and suspect that the majority of people on this forum are the same. I don’t know who these “others” are that MF was referring to but , particularly as a Heart Star, it would have been better to address this via a PM rather than a public rebuke.
Hi anon 2023
Agree entirely with what you say.I am a bit confused either i replied in the wrong place or the post i was replying to has been deleted.The one i thought i was replying was accusing someone of being an expert (thats not exactly what they said but the gist).We can all be a bit cranky.I am super cranky.I often write my post and then think pearls before swine.
it’s been deleted because the person who posted it has been kicked off. They were a lovely person so it’s such a shame and so unfair .
Having known for 10 years what was wrong with my spine and being pushed from consultant to consultant and lots of private ones who had never heard of the problem I finally walked into a Manchester hospital to see a new pain consultant who, within 5 minutes told me exactly what was wrong. I hugged him and cried. The relief was enormous. Just to get the validation even though, for me it was too late for treatment, was HUGE. Well done for persisting. You know your body far better than any doctor. I hope you can now get help with it. Never give up.
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