Don't understand what this means...Subaortic Membrane...

[Phoenix35]

I wonder if anybody knows as I am driving myself mad with worry. I am 35 years old and I have the cardiac consultant at the end of next week but had a letter saying that after my mri I have a Subaortic membrane with significant left ventricular outflow tract gradient. Maximum velocity across the valve is 3.3m2. Aortic valve is tricuspid and all valves functioning normal. They are discussing the need for a transoesophageal echocardiogram. What does this mean to me and my health? Why have I got this membrane. Please if anybody can advise with translation of medical terms I would appreciate it. Thankyou.

[IanMK]

Hi Phoenix

I can’t help with deciphering the terminology but what I would suggest is that worrying about something you can’t do anything about doesn’t achieve anything good. Try not to worry. It’s only a week until you see your consultant and you can ask for clarification then. I suggest you write down a list of questions and, if possible, take someone with you to help remember what the consultant tells you.

The TOE is to look closely at your heart from behind. An echocardiogram probe is put down your throat. I had one prior to a cardiac ablation to look for blood clots in my heart. It is a straightforward procedure and it was done under general anaesthetic. I was warned that my throat may be sore afterwards but I didn’t have any problem.

I hope this helps.

[Phoenix35 in reply to IanMK]

Thank you kindly for replying. Yes I will wait and the list is a great idea. My mind has always had a tendency to go into overdrive so I am riddled with worry generally at the moment. Thanks again, Phoenix

[MichaelJH Heart Star]

A subaortic membrane is a common type of aortic stenosis.. It is a membrane that forms under the aortic valve. Because of obstruction to the flow of blood from the left ventricle into the aorta turbulence can result. Treatment will depends on symptoms and the results of further investigations such as the TOE. My friend's wife had the TOE with sedation but much depends on the individual.

[Phoenix35 in reply to MichaelJH]

Thank you so much for the reply and explanation on TOE. I am assuming that the valves working ok is somewhat positive although terrified as to what the potential treatment may be and what the future may hold. I feel very bleak.

[Hidden]

Hi Phoenix,

So sorry to hear you’re having these problems and naturally you’re very concerned. I always think not knowing the full picture about what you’re dealing with and waiting for test to be done, results, diagnosis etc is some of the worst of it.

I can only hope to encourage you with my story. I’m now 62 yrs old. When I was 27, diagnosed with sub aortic valvular stenosis while pregnant with 2nd child, had open heart surgery a year after she was born to remove fibrous membrane and some other bits and pieces behind aortic valve, which was bicuspid. My aorta had almost completely collapsed because the flow from left ventricle so constricted, heart muscle increased lots in size by the time of the op and I was very lucky! I’d begged not to have a new valve fitted unless absolutely necessary and it was considered that the valve was working well enough to keep.

At that time, in early 1980s, metal valves were usually given to older patients and tissue ones to younger and I really didn’t want one - I knew I’d be back 10-15 years. Fast forward 10 years and that view had reversed.

Well I was back again in just over 9 years - for a new aortic valve 😊 Early 1990s there were some very experimental artificial valves doing the rounds that fairly regularly failed catastrophically and I asked if I could have a boring metal (ball and cage) one that went on forever. Thankfully my surgeon gave me a Starr-Edwards one which, nearly 26 years later, is still working really well. Been on high dose warfarin all these years, have own inr tester and manage that ok generally. Whenever I see a cardiologist my antique valve is regularly listened to by any medical students who’d like a laugh or a new experience and I consider myself very fortunate to be here. The medics were amazing and I’m very grateful. I was given my life back.

I completely understand that you must be feeling bewildered and worried about your future. The TOE isn’t so bad and is a useful diagnostic tool. Cardiology and heart surgery techniques have moved forward so well in recent years. Whatever is ahead of you, do the research, ask the questions and you’ll be in safe hands I’m sure. The shock of knowing there’s possibly something so major wrong with you is really hard to deal with. Have hope, hang in there.

[Phoenix35 in reply to Hidden]

Thank you so much for replying. Really I know what they can do is remarkable and you are a testament of that. I just have to try and stay calm.

[Hidden in reply to Phoenix35]

I know and it’s such a shock when you find out there’s a problem. And it may be ages or never that you need anything g other than drug therapy. Hoping you have someone you can talk it all through with, especially when you have a full diagnosis. This forum seems pretty good, doesn’t it?

[MichaelJH Heart Star]

Sometimes the valve is unaffected by the stenosis and thus can remain untouched during surgery. However, if there is the slightest doubt it should be replaced as OHS is not something to be undertaken lightly. Edwards now also do a Resilia long life (projected up to 25 years) aortic tissue valve if replacement proves necessary and you would prefer not to have a mechanical one.

Prepare a list of questions before your next consultation. It may be worth taking someone along. I have accompanied people in the past and in the heat of the moment they can misinterpret things totally.

[Phoenix35]

Thank you. These are all valid points. As you suggested I have started to put together a list. I can't seem to get to grips with if I will require surgery to remove the membrane or if it is something that can be monitored. That is my biggest question to ask next week.