Myocardial Bridge, anyone else with this condition???? Any advice would be great

[EvaMolly]

Anyone with a myocardial bridge?? I'm struggling to find anyone that has same condition as myself and that would understand how much of a struggle living with this is on a daily basis, would be great if anyone has more info on the condition.

[Milkfairy Heart Star]

Hi Eva Molly

Welcome to the forum

Myocardial bridges are rare and not well understood.

They can cause microvascular angina leading to debilitating chest pain.

There is another forum member who I think has had the operation to ' unroof' their myocardial bridge.

Hopefully they will be able to say more.

There are very few centres in the UK that carry out the surgery.

Liverpool Heart and Chest maybe worth contacting.

[mistymolly in reply to Milkfairy]

St. George's Hospital I believe has done at least one. It is a nightmare living with a myocardial bridge.

[Zabrallo in reply to mistymolly]

Hello, do you have a little more information about unroofing surgery done in St. George's? Also, what is the name of the FB group?

[mistymolly in reply to Zabrallo]

I'll have to look up the name of the surgeon. Theres an excellent document on the support group under announcements. It might be in that. Just type in myocardial bridge support group and it will come up. Loads of successful unroofing surgery being carried out in America. Best of luck

[EvaMolly in reply to Milkfairy]

Thanks for getting in touch, I haven't known or even heard of anyone else with the condition, so its just so nice to know I'm not alone. People seem not to understand what this condition does, or how debilitating it is.

[mistymolly]

Yes I understand exactly what you mean. You are not alone. It is debilitating, to say the least. An absolute nightmare. I know of one surgeon in the UK who has done unroofing surgery. They call it releasing but Stanford University Hospital in California is leading the way. Dr Ingela Schnittger is amazing. She is the expert but unfortunately not many of us have the means to get there. You will find a wealth of information and support on Facebook. Are you on Facebook? If you need any more information, please don't hesitate to reach out to me as most cardiologists are not keeping up with the latest research and it is frustrating and soul destroying and adds to our misery. I felt so alone before I found the support group. I cannot lead a normal life now. Look out for me on the Facebook support group. My name is Stephanie.

[Milkfairy Heart Star in reply to mistymolly]

Hi Mistymolly

I live with coronary vasospastic angina so microvascular and coronary artery spasms Myocardual bridges can of course trigger vasospasms.

I am on the FB groups too and through them have met up in real life with other people with the conditions.

I came home from my latest 10 day stint in hospital for unstable angina last week.

The BHF adopted the term Microvascular angina in 2017 and updated their information on both MVA and Vasospastic angina with input from an expert patient.

A team at St Thomas has just published their research into a new diagnosis and classification of the possible causes of Microvascular dysfunction.

There are 2 very experience and well regarded researchers now actively researching into MVA and vasospastic angina. Both hold very prominent positions in their professional groups.

Progress but of course not fast enough!

[mistymolly in reply to Milkfairy]

See my response below. Get onto Facebook. You won't regret it. The information there is unreal and the support which we badly need.

[Milkfairy Heart Star in reply to mistymolly]

I am already actively involved in the FB groups however I got fed up with the issue of feeling I was being shamed into donating money to a particular cause.

This issue sadly has lead to a great deal of division within the groups.

FB groups are like this forum for support not fund raising.

[mistymolly in reply to Milkfairy]

Sorry to hear that. We have a 40 page document now which has everything you need to know about a myocardial bridge. I really don't think I would survive without the support.

[EvaMolly in reply to mistymolly]

Hi, so nice to hear from you, I appreciate if nothing else knowing that there are others that know and understand how this condition affects life. I've struggled so much since diagnoses, no one I suppose in my mind believing how it's left me feeling. My cardiologist was really good at the time, he put me on loads of meds which in itself has it problems, but did tell me there was nothing else they could do for me. Leaving me feeling quite deflated, since then I've just ambled along best I can. I don't have Facebook, not something I do, but appreciate your thoughts.

[mistymolly in reply to EvaMolly]

Get onto Facebook. Believe me when I tell you I really don't know where I would be without it. There is a wealth of information on it. We now have a 40 page document on myocardial bridge- telling you everything you need to know thanks to one person who has had unroofing surgery himself but continues to help us all. It must be very difficult having other heart problems too. I will support you if you need any help

[EvaMolly in reply to mistymolly]

Thank you, nice if that's the word to describe such an awful condition, to know others understand. I was also to top it all after too long diagnosed as diabetic, I had been having seizures for about two years, which until the diabetic diagnoses they where unsure of nature. It turned out to be diabetic seizures, I also developed neoropathy where I've been left with no feeling from the knees down, so mobility is difficult, I'm part in wheelchair, battling not to go into on a permanent basis. Due to the late diagnoses of diabetes, I've also been left with 60% disease of the LAD. So excersize is difficult, I do as much as I can with upper body, but with the heart, lack of feeling in legs, just makes things really difficult with so little in the way of support from medical professionals. I get a lot of body pain, does anyone else suffer with pain, I wondered if it was something my could be related to the heart condition???

[mistymolly in reply to EvaMolly]

My God really sorry to hear how much you are struggling. It must be really awful. It's hard enough living with a bridge. Hope you have support at home.

[Milkfairy Heart Star in reply to EvaMolly]

Hi EvaMolly

I am so sorry you have so much to deal with all at once.

My heart goes out to you.

We as a group are indeed a lost tribe out in the wilderness.

There is very little support and our quality of life takes the hit.

I have an amazingly supportive family and I hope you have such support around.

[Zabrallo in reply to mistymolly]

Hello, Ive been diagnosed with bridge not long ago, could you please advise where this document can be found?

[mistymolly in reply to Zabrallo]

Yes are you on Facebook?

[Milkfairy Heart Star in reply to EvaMolly]

Hi EvaMolly

There is another forum member with a young family who I think may have had the surgery hopefully she will get in touch.

I am on a ridiculous number of medications too. It is hard to be told there are si few treatment options.

I attended a Pain Management programme which was helpful to learn strategies of how to live with chronic pain.

I also see a Cardiac Psychologist.

I find Cognitive behavioral therapy, mindfulness meditation, tai chi and yoga all helpful for me.

It takes time to learn to live with the pain and other symptoms.

You may live with an unusual condition but please don't feel you are alone.

This forum has many many amazing people all living with their challenging heart conditions and they will be along too to provide their support and encouragement.

I am always hopeful that in the future they will be able to find more effective ways of treating all of us.

[Zabrallo]

I have had valve replacement surgery in 2018 but I was struggling with chest pains for nearly 10 years and only recently been diagnosed with bridge as well.

The pains I have can be very long lasting, usually caused by physical activity and absolutely soul destroying.. In my case the Diltiazem helped to reduce the symptoms, but the dose has to be high - 360mg per day. I am always been told that nothing can be done with it..

[Surprising]

I was diagnosed 2 years ago.. i feel fake. Because i dont have high trponion level to be taken seriously on pain.

[Kona514]

I have a MB. There is a Facebook group with great information on MB including meds and those that have had unroofing of the bridge. The people are great resources- facebook.com/groups/Myocard...

[Milkfairy Heart Star in reply to Kona514]

Hi Kona514,

I am aware that unroofing of Myocardial bridges is available in some centres in the US however it isn't routinely offered in the UK on the NHS.

You might be interested in this information.

internationalheartspasmsall...

[Czlexski]

Hi I was diagnosed with a mycardial bridge in October. I have an MRI scan booked for May 22.