BAV With Severe Regurgitation - How worried should I be at this point?

Back in December of 2023, I got diagnosed with BAV & severe regurgitation, with my cardiologist indicating that I would have surgery sometime in 2024. I am however still on the waitlist to even have my consult with the surgeon. I've phoned multiple times and get hit with the same "we're still working on consults from back in Sept/Oct" (thanks Canada medical system). With each passing day I'm feeling more and more anxious as my googling indicated the survival rate with severe regurgitation is 5-10 yrs, and who knows how long I've had this for.

Wondering how worried should I be at this point. And whether it's worth trying to look at surgery outside of Canada, or if I should just be patient and wait.

Your experience is unfortunate; Im sorry this is happening to you. My experience is very different because I'm from the US. Since your cardiologist thinks you need surgery within the next 10 months, perhaps they can push the surgeon's office to move you up on the list? Also, are there other surgeons that you can talk with?

Mark Miller said:

Your experience is unfortunate; Im sorry this is happening to you. My experience is very different because I'm from the US. Since your cardiologist thinks you need surgery within the next 10 months, perhaps they can push the surgeon's office to move you up on the list? Also, are there other surgeons that you can talk with?

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Yes I'm thinking of at the very least looking at other surgeons in my country if this continues to delay. Already asked if my cardiologist can bump me up the wait list but he can only give a referral per his words. The surgeon decides the waitlist sadly.

@NorthVanJosh

Mark Miller said:

My experience is very different because I'm from the US.

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I'm from Australia and my experience is different to yours and more like what Mark has reported.
However when I had my previous surgery (#3) my valve wasn't the primary issue, but an aneurysm was. Even still it was the 31st of August when an angiogram identified my aneurysm was indeed as large as they thought and 22nd of November when I was operated on.

Even though it was 5.6cm

Prior to that I requested my OHS (#2) be delayed some months to allow me to finish my semester at Uni (I was 28yo) as I didn't want to ruin the whole year's work. My surgeon agreed, but made it clear to contact them as soon as my last exam was finished

I didn't die on either occasion

Now I'm not defending the situation you are placed in by the Canadian system and I always advocate for earlier surgery. But the numbers are rubbery. We have one member here who's been "severe" for nearly 6 months by my reckoning and he's still going back and forward "ECHO shopping" to see if he may be moderate so that he can perhaps defer his surgery. (*yes, he's ----Bonkers if you ask me)

I would personally stop googling because frankly you and I (as well as most people here) just can't actually know your situation (without at the very least a full set of reports to work with); but I'm sure that even the very best here would simply say "get it done sooner if you can"

You say earlier

survival rate with severe regurgitation is 5-10 yrs

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5x12 = is sixty months ... what we don't know from your stats is how that goes with respect to "are we talking about an 80'yo or a 50 yo?
So while its perhaps frustrating perhaps also the problem is "you don't know enough" and that's what's killing you.

I do not know what options are available to you (in Australia you can shift from "public" to "private" which means you can queue jump (to an extent) the public health system because you pay (the extent limitation is that people who will actually die soon if not operated on will get that spot first). I propose that instead you consider asking for greater clarifications from your team and ask exactly the questions you've asked here to them.

Googling is pretty much a stupid and pointless thing to do unless

• you ask the right questions (of google)
• have sufficient background to understand and interpret the answers
• have time to actually become expert (which would be about 10 years)

Without that you're likely to get made anxious rather than informed by Google (or worse AI).

https://www.vice.com/en/article/pkadgm/man-dies-by-suicide-after-talking-with-ai-chatbot-widow-says

HTH and try to tread the line of being patient but not being complacent.

Best Wishes

@NorthVanJosh

I will just tell you my story. My Unicuspid valve with severe stenosis and regurgitation was discovered randomly. The year before it was discovered, I did the INCA trail at Machu Pichu, and when we were at Dead Women's pass (4200 meters above sea level), I slowed down a lot, my nails became quite white and then I blacked out for a second, although the guide gave me a pill and I immediately felt much better. I didnt think anything was wrong since I kept hiking for two days thereafter and felt perfectly fine. Then a year later, my issue was discovered and my left ventricle was already dilated.

Now even then, me being in much worse shape than you, the surgeons only recommended surgery within 3-6 months and just said not to do any burst exercise, dont run up stairs and push too hard on the toilet (I had an aneurysm as well).

So I wouldnt worry too much. You need to trust your medical team. I always say you should find a great medical team and then go with their advice. My team ended up being right. Aneurysm over 5cm during surgery, so the surgeon took out the root as well and my heart went back to normal immediately after the surgery.

So dont worry. Just be careful and trust the medical team looking after you,

Since you've been waiting since December and they are just now scheduling surgeries from September. That gives you two months before you will get a date. Not being Canadian, I don't know what mechanisms are available to speed up the process. Are there lawyers who specialize in this type of thing?

tom in MO said:

Not being Canadian, I don't know what ... lawyers who specialize in this type of thing?

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Two lawyers, Mr AlwaysTrust YourDoctor and Mr NeverListen ToSome RandomGuyOnTheInternet, were having an argument in the lobby

Hi! I was on the 'wait and monitor' routine for eight years with severe regurgitation (bicuspid with a poorly formed 3rd leaflet) valve. This is cause I was young (late 20's) and was otherwise asymptomatic. The main concern was to monitor the left ventricle size and have the surgery before it dilated to a point where it would not recover even if the valve were replaced (ie, heart failure) since the heart had to work a bit harder due to the regurgitation. To that end, I had echocardiograms at least annually, sometimes every 6 months depending on the change from the last echo. My left ventricle was dilated to I think 7. something but then reduced into the normal range (5.2 or something) after the surgery. Also wall thickness and ejection fraction were monitored.

I became short of breath walking up stairs, so the surgery was triggered but I was otherwise OK for all that time. Of course once I had the surgery I realized I wasn't totally fine and wished I had the surgery sooner!!

Hope that helps. I'd guess your team would not keep you waiting if your situation were critical, I hope that's the case.

Patty

NorthVanJosh said:

Wondering how worried should I be at this point. And whether it's worth trying to look at surgery outside of Canada, or if I should just be patient and wait.

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My severe aortic regurgitation was sudden onset at age 46. Literally overnight - I woke up with symptoms including a pulsation throughout my body, out of breath walking up a flight of stairs, unable to go more than 5 minutes on my treadmill, etc. After a month of denial (and prompting from my wife) I made an appointment and an echo was scheduled.

In my first appointment with a cardiologist he described it as severe aortic regurgitation and gave me 3-4 years to live without surgery. That was concerning, but did not enlighten me on how urgent surgical intervention was. So I asked these questions:

1. How severe is the leak on a 1-10 scale with 10 being worst? My cardio said they don't assess it that way, but I pressed him and he eventually said 10.
2. Is there any damage to my heart yet? He said my left ventricle was stretched, but that is not necessarily permanent.
3. How long before there is permanent damage to my heart? He said he couldn't estimate that. I pressed him again for an answer and he said could be as soon as 6 months.

Based on those answers and his comment that they usually schedule surgery sooner rather than later for someone experiencing my symptoms, I was persuaded it was urgent. So I had surgery 3 weeks later.
It turns out the regurgitation was caused by the sudden rupture of a cord that was attached to the defective leaflet. The other end apparently was attached somewhere inside my heart, ruptured and the leaflet prolapsed. Up until that point my valve was functioning normally as far as I know.

Cords on valves are very rare. I doubt you have that. I can't answer whether you should wait, but sounds like you need more info to determine urgency . Ultimately a detailed conversation with your cardiologist should help you determine if you can wait. I recommend reviewing severity of your symptoms with your cardio and asking questions similar to above to help you determine if this is an urgent situation that warrants seeking surgery elsewhere or if you can wait.

I cleaned up some posts in this thread while they are under review.

There's no need for attacks. If a member breaks the rules report it, and we will address it.

Back to the thread!

RAS said:

My severe aortic regurgitation was sudden onset at age 46. Literally overnight - I woke up with symptoms including a pulsation throughout my body, out of breath walking up a flight of stairs, unable to go more than 5 minutes on my treadmill, etc. After a month of denial (and prompting from my wife) I made an appointment and an echo was scheduled.

In my first appointment with a cardiologist he described it as severe aortic regurgitation and gave me 3-4 years to live without surgery. That was concerning, but did not enlighten me on how urgent surgical intervention was. So I asked these questions:

1. How severe is the leak on a 1-10 scale with 10 being worst? My cardio said they don't assess it that way, but I pressed him and he eventually said 10.
2. Is there any damage to my heart yet? He said my left ventricle was stretched, but that is not necessarily permanent.
3. How long before there is permanent damage to my heart? He said he couldn't estimate that. I pressed him again for an answer and he said could be as soon as 6 months.

Based on those answers and his comment that they usually schedule surgery sooner rather than later for someone experiencing my symptoms, I was persuaded it was urgent. So I had surgery 3 weeks later.
It turns out the regurgitation was caused by the sudden rupture of a cord that was attached to the defective leaflet. The other end apparently was attached somewhere inside my heart, ruptured and the leaflet prolapsed. Up until that point my valve was functioning normally as far as I know.

Cords on valves are very rare. I doubt you have that. I can't answer whether you should wait, but sounds like you need more info to determine urgency . Ultimately a detailed conversation with your cardiologist should help you determine if you can wait. I recommend reviewing severity of your symptoms with your cardio and asking questions similar to above to help you determine if this is an urgent situation that warrants seeking surgery elsewhere or if you can wait.

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Thanks, I got an update from the surgeon and should hopefully have a consult booked in the next two weeks. I'll be sure to ask these questions. I am still able to exercise relatively well. But have for sure noticed a decline in my out of breathness!

afraidofsurgery said:

Hi! I was on the 'wait and monitor' routine for eight years with severe regurgitation (bicuspid with a poorly formed 3rd leaflet) valve. This is cause I was young (late 20's) and was otherwise asymptomatic. The main concern was to monitor the left ventricle size and have the surgery before it dilated to a point where it would not recover even if the valve were replaced (ie, heart failure) since the heart had to work a bit harder due to the regurgitation. To that end, I had echocardiograms at least annually, sometimes every 6 months depending on the change from the last echo. My left ventricle was dilated to I think 7. something but then reduced into the normal range (5.2 or something) after the surgery. Also wall thickness and ejection fraction were monitored.

I became short of breath walking up stairs, so the surgery was triggered but I was otherwise OK for all that time. Of course once I had the surgery I realized I wasn't totally fine and wished I had the surgery sooner!!

Hope that helps. I'd guess your team would not keep you waiting if your situation were critical, I hope that's the case.

Patty

Click to expand...

Thanks Patty, crazy to know that you had it for 8 years! I do know that my heart is very englarged but I did ask if it would go down to a normal size and the doctor said yes after surgery it should return to normal. Consult is hopefully coming in a couple of weeks so I can hopefully have a surgery date down the line!

I also have a BAV with severe regurgitation and using the UK national health system. Late Nov-23 at an annual check up it was noticed my regurgitation is severe and a TOE/TEE was scheduled for 10th Jan. The TOE/TEE was unsuccessful and I now have one planned for Friday with an anaesthetist in the room to ensure it happens.

Have you had the TOE/TEE yet?

I was told “surgery within 6 months” on 10th Jan and expect to hear a more refined timeline on Friday. I am symptomatic and it is having a big impact on my quality of life with tiredness being the most significant of them. I’d go tomorrow for surgery if I had the choice.

Have you noticed any change in symptoms? Have you informed them?