My brother is 55 with a bicuspid valve and they are steering him towards open surgery, not the keyhole one. Why him and not me?

#1Marlene K(Joined Mar 2026 · 31 posts)August 3, 2026, 2:26 pm

This one is not about me for once. My younger brother, 55, has been getting breathless playing five a side and finally went to the doctor about it. Turns out he has a bicuspid aortic valve, which apparently means two flaps instead of three, and he was born with it and nobody ever noticed. It has narrowed and they are talking about replacing it within the year.

Here is what has thrown the whole family. I had mine done through the leg, home in two days, and I have been telling him for a fortnight that he has nothing to worry about because it is barely a procedure these days. Then he comes back from the heart team appointment and says they are recommending the OPEN operation. Breastbone, bypass machine, weeks off work, the lot. And they also want to keep scanning something in his aorta, which nobody has explained to him either.

So now I feel awful for having promised him the easy version. Why would they offer me the keyhole one at my age and send my 55 year old brother, who is fitter than I have ever been, to open surgery? Is it because of the two flaps? Has anyone else had a bicuspid valve and been told the same?

#2TwoNightsTerry(Joined Feb 2026 · 63 posts)August 4, 2026, 7:58 am

Not bicuspid myself, but I remember being told at my own appointment that younger patients tend to get pushed towards the operation and I did not understand why either at the time. Something about the surgical valve having the longer track record and them thinking further ahead for someone with more years to cover.

Do not feel awful. You told him what was true for you. Nobody hands you the small print about anatomy at the family dinner table.

#3Ron Castellano(Joined Feb 2026 · 47 posts)August 4, 2026, 7:12 pm

Marlene, the aorta bit would be the thing I would want spelled out before anything else. My cousin has the two flap valve and the thing his lot watch year in year out is not really the valve, it is the width of the big vessel coming out of the heart. He has had a scan every year for about eight years and the valve has barely moved.

Fifty five and playing five a side, honestly. My generation of the family sat down at fifty five.

#4Dr. Helena VossClinical reviewer(Joined Jan 2026 · 58 posts)August 6, 2026, 10:40 am

Marlene, the short answer is that a bicuspid valve is a genuinely different problem from the one you had, and a 55 year old is a different planning question from a 60 something, so a different recommendation is not a downgrade or an oversight. Let me set out the reasons, because they are worth him understanding before he consents to anything.

First, the anatomy. A bicuspid valve opens as a slit rather than as three cusps meeting in the middle, so the opening is often oval and the calcium sits in heavy, uneven ridges rather than spread evenly. A round valve frame expanded inside an oval, unevenly calcified opening may not seat as predictably, which raises the chance of a small gap around the edge, what we call a paravalvular leak.

Second, the evidence. The trials that moved keyhole valves into mainstream use in lower risk patients, PARTNER 3 and Evolut Low Risk, both excluded bicuspid anatomy from their randomised groups. So the reassuring figures the rest of us quote, on stroke, on 30 day mortality, on pacemakers, come from patients whose valves had three leaflets. There are now large registries of bicuspid patients treated with a catheter valve and they read broadly well, but a registry is a weaker instrument than a randomised trial and it is fair for him to know that is what would be underneath the recommendation.

Third, and Ron has put his finger on it, the aorta. Bicuspid valve disease frequently comes with widening of the ascending aorta, the large vessel the valve opens into, and that widening has its own measurements and its own thresholds. It does not settle down because the valve has been dealt with. If the aorta needs repairing, that cannot be done through a catheter in the groin, and then the decision is effectively made by the aorta rather than by the valve.

Fourth, age and durability. Tissue valves wear out, and deterioration tends to run faster in younger patients, so at 55 a team is planning a lifetime rather than a single procedure. That is the same reasoning laid out in why a bicuspid valve changes the calculation.

One practical thing for the family rather than for him: bicuspid valve disease clusters in families, and first degree relatives, so parents, siblings and children, are commonly offered an echocardiogram. That includes you, Marlene, although with a valve already replaced your heart is being scanned anyway. His children would be the ones to ask about. What his own aorta measures and which route suits him are questions for his heart team, who have his scans in front of them.

#5Marlene K(Joined Mar 2026 · 31 posts)August 6, 2026, 6:33 pm

Dr. Helena Voss said:

a different recommendation is not a downgrade or an oversight

Thank you. That is exactly the sentence I needed, because he has spent a fortnight convinced he has been fobbed off with the old fashioned version while his big sister got the modern one.

I had genuinely never heard the word bicuspid until last month and I have been through this whole business myself. Sending him the aorta paragraph tonight.

#6frankm1952(Joined Apr 2026 · 19 posts)August 8, 2026, 9:05 am

Reading this as someone who had the keyhole one at 74 and thought it was simply the better option full stop. It had never crossed my mind that it might be the right answer for me and the wrong one for someone twenty years younger. I had it filed in my head as new equals better.

Tell your brother from a stranger that recovering from the operation at 55 and fit is a completely different proposition from recovering from it at my age. That was the bit that frightened me off it, and it may not apply to him at all.

#7Marlene K(Joined Mar 2026 · 31 posts)August 10, 2026, 4:47 pm

Small update. He rang the specialist nurse and asked the two questions from this thread, what the aorta measures and whether the recommendation would change if it were not widened. Turns out it is on the wide side of normal and being watched closely, which is a big part of why they are leaning the way they are.

He is still not happy about the breastbone. But he says he now understands the reasoning instead of feeling like he drew the short straw, and he has asked for his daughter to be scanned as well.