bicuspid valve

[charles_moeller123]

Hi all,

im 33 years old and been aware of my bicuspid valve for 9 years

I get an echo scan every 3 years and have been told there’s no issues with my heart so far apart from mild stenosis.

do you think it’s likely this stenosis will transition from mild to severe in a short time?

the dr seemed calm and said there’s no need for any action and told me to stay on course for the next round of echos next year (3 years since my last one)

[Yumz199725]

I have bicuspid aortic valve with moderate to severe aortic regurgitation and moderate stenosis I have a scan every year. That's good that your cardiologist is happy with your condition, it seems stenosis progresses gradually or fast depending on your condition and stage of stenosis x definitely talk to your cardiologist at your next appointment. You can message me for any more information. X

[charles_moeller123 in reply to Yumz199725]

Thank you. I hate the intermediate periods between scans. Although the sent a letter about the stenosis they concluded there’s nothing to action and wait another year

[wilsond]

I had mine diagnosed through investigations for AFib and Flutter, 10 years ago. Obviously had it since birth.I have so far had stability, some mild stenosis but I am 64 now and generally wearingvoutca little (just discovered I have osteoarthritis / + bone spurs in all my lumbar vertabrae)

I really understand your feelings of dread awaiting echo results. As far as I understand,stenosis is usually gradual.If it progresses, action will be taken.

[charles_moeller123]

thank you for being open with your diagnosis. 64 years old sounds like a good run without a replacement + with stability.

The challenge I have is always wondering how gradual is stenosis..I imagine it’s case by case and I will some how need to find a way to let it be.

[NotanAstronaut]

Hi Charles. My blog might help you.

shaunoconnell.com/2023/08/1...

I’m answering you as a fellow patient, not as a clinician.

If it’s mild now I doubt it will progress to severe rapidly. Once it becomes moderately stenosed I would expect that the cardiologists will arrange for your echo to be done every year. That’s what happened to me. In fact they scheduled it for every nine months in case NHS delays meant it was actually 12 but in the end for me it did turn out to be about every nine months.

If you get symptoms of chest pain or shortness of breath, you should arrange to see your GP to be examined. Obviously if the chest pain is severe, go to A&E or call an ambulance. I think this is unlikely to be due to your aortic valve if you are otherwise fit and well.

I would encourage you to stay slim and fit and don’t smoke exercising whilst your valve is modest to nose won’t cause you any significant harm vigorous exercise when you have severe stenosis is very dangerous and I guess with moderate stenosis, it’s something in between. Be advised by your cardiologist.

[charles_moeller123 in reply to NotanAstronaut]

thank you Shaun. If you don’t mind me asking how quick did it take you to go from mild to severe and needing surgery?

I’m still trying to process all of this…sometimes it feels like all I f this is a dream

[NotanAstronaut in reply to charles_moeller123]

I had a long period of steady normal /mild then got moderate and severe but even at severe I was ok to walk the dog slowly uphill. My coronaries were in good condition so I think that helped I ran, cycled, swam and skied a lot in the past and am getting back into them now .

All humans are different 1% have bicuspid valves. They stenose up at around 50-60. Be glad you know. It’s terrible for folk that find out after a severe cardiac event. Look after yourself and it will be routine surgery and six months later you’ll be back into near normal life .

One person’s data

[NotanAstronaut in reply to charles_moeller123]

To go with my data

AS severity ranges

[77andcounting]

I had a bicuspid aortic valve and was diagnosed with stenosis for the first time at age 65 (I should go to the Doctor more often!) By then my symptoms had emerged (breathlessness, etc) and I had the valve replaced (open heart surgery) with the tissue version. That was 12 years ago.

Clearly, stenosis in my case was very gradual and, at first, I mistook the symptoms as signs of my increasing age: I guess your much earlier diagnosis means you have the option of intervention at a younger age with a much better chance of recovery. Having said that, I have been very active in my 70s - lots of country walking, regular golf and a recent trip to New Zealand and Australia to see family.