Has anyone on here been diagnosed with this condition? If so I’d be really interested to know what treatment options and guidance you have been given. There is no literature for patients and so it’s a bit tricky to get much of a proper picture about it. I understand what it means, it’s just there is not much out there except medical research. I was diagnosed in November.
Thanks in advance
Have you tried contacting the BHF Helpline, their specialist nurses might have helpful information for you : bhf.org.uk/informationsuppo...
Hello, thank you for replying and your suggestion. I have spoken to them a couple of times but unfortunately neither of the nurses were familiar with the condition and the BHF does not have anything on it for them to refer to. It was the nurse who suggested I post on here.
Oh, I'm sorry to hear that, I hope that someone comes up with something helpful soon. If not have you thought of asking your cardiology team for more information to help you learn to live eith this. Some medics don't fully realise how lost we can feel when they give us a diagnosis but do not explain what it might mean. (Then they have the nerve to get irritated when we turn to google!)
There is a section in Wikipedia about this, but it might be a bit technical. From what I have read this can be treated with medication or surgery, but your cardiologist should explain the options at your next appointment.
Hi, if I was you I would ask whoever diagnosed this to explain more about it and what the treatments are. I don’t know if you’re still waiting to see a cardiologist about this, if so that’s the time when you pose all your questions to them. Write them down from now while you think of them.
Let us know how you get on. All the best.
Wikipedia says it's a risk factor for MVP and myxomatous degenerative valve disease. I have those, but from a different genetic origin.
My MVP progressed from mild regurgitation to severe over about 15 years. I was still asymptomatic, so my surgeon recommended waiting for left ventricular hypertrophy before operating. That took another 5 years or so, after which I had open heart surgery to repair my mitral valve and replace my aortic valve. (Because my disorder is a connective tissue disorder it can affect all valves. The two on the left side are under higher pressure and so take more of a hammering.)
Because mine wasn't caused by MAD, I don't know if MAD would affect how the mitral valve is repaired and/or replaced. My leaflets were trimmed, an anchoring ring installed, one chordae repaired, and one replaced.
Thick Mitral Valve / Palpitations 
Mitral valve replacement 
Mitral regurgitation
Mitral Valve Regurgitation.
mitral valve repair….. or replace
