I must have read into your post incorrectly, and I am happy you clarified this. Perhaps this will help others along the way. All the best.
Hello Fellow BAV Repair Peeps
- Thread starter minpin
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Hi minpin, congratulations on your surgery. What symptoms did you have? Moderate regurgitation should not be symptomatic, AFAIK.
minpin
Member
Thanks, Lucker, happy to have it behind me.
I had all the symptoms listed here except chest pain. All resolved after surgery.
https://my.clevelandclinic.org/health/diseases/24396-aortic-regurgitation#symptoms-and-causes
May I ask your interest in asking?
I had all the symptoms listed here except chest pain. All resolved after surgery.
https://my.clevelandclinic.org/health/diseases/24396-aortic-regurgitation#symptoms-and-causes
May I ask your interest in asking?
Sure, I am a possible future patient and want to know what to expect. Also, as I said, having symptoms is not common with moderate regurgitation.
minpin
Member
Hi, Lucker. I just read back at a few of your posts… looks like you have been in the waiting room a long time. Best of luck to you on your journey.
I wonder if you have a source for that? I am not asking to call you out in any way – I am genuinely curious. I wonder about things like the patient population that generalization is based on, and the range of people's murmur-to-symptom experiences. It makes me wonder if that generalization prevented doctors from discovering my heart / aorta condition for many years. I am actually grateful for my aneurysm, which drove the surgery, since no one was taking my symptoms or murmur or family history seriously.
First symptom was extreme fatigue and post-exertion malaise and pain in my legs. I did not realize I had edema until after surgery when I could suddenly see veins and tendons in my feet, and shoes were less tight, and lost puffiness in my abdomen. Later symptoms were this weird dry double cough that was unrelated to being sick. I near-fainted a few times — lost control of my body & fell backward, but did not lose consciousness. Hella palpitations. All the symptoms resolved after surgery. Well, I still get short of breath on exertion, but I still have a BAV, so maybe that's to be expected.
My cardiologist told me it is especially important for people with small hearts to stay active as they age… they need their hearts to be strong enough to supply blood throughout their body. I don't know if he meant I have a particularly small heart, or just that I am female and have a smaller heart than most men. I do wonder if that related to my symptoms being so severe, even with moderate (or moderate / severe according to a later TEE, dunno if that makes any difference) regurgitation.
I wonder if you have a source for that? I am not asking to call you out in any way – I am genuinely curious. I wonder about things like the patient population that generalization is based on, and the range of people's murmur-to-symptom experiences. It makes me wonder if that generalization prevented doctors from discovering my heart / aorta condition for many years. I am actually grateful for my aneurysm, which drove the surgery, since no one was taking my symptoms or murmur or family history seriously.
First symptom was extreme fatigue and post-exertion malaise and pain in my legs. I did not realize I had edema until after surgery when I could suddenly see veins and tendons in my feet, and shoes were less tight, and lost puffiness in my abdomen. Later symptoms were this weird dry double cough that was unrelated to being sick. I near-fainted a few times — lost control of my body & fell backward, but did not lose consciousness. Hella palpitations. All the symptoms resolved after surgery. Well, I still get short of breath on exertion, but I still have a BAV, so maybe that's to be expected.
My cardiologist told me it is especially important for people with small hearts to stay active as they age… they need their hearts to be strong enough to supply blood throughout their body. I don't know if he meant I have a particularly small heart, or just that I am female and have a smaller heart than most men. I do wonder if that related to my symptoms being so severe, even with moderate (or moderate / severe according to a later TEE, dunno if that makes any difference) regurgitation.
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minpin
Well my source is that many people even with severe AR were asymptomatic, based on their stories. Also the clinical recommendations call for surgery only in severe and symptomatic population, if their heart dimensions are not calling for surgery. On the other hand, I've read about concerns that small people sometimes never reach critical heart dimensions, despite their AR being severe and causing symptoms. Also there's evidence that the heart surgery is harder on women. And Echo imaging is quite operator-dependant, and also sometimes not very decisive, so you could have been more severe, than what your Echo showed. Have you had MRI or CT?Thanks for your good wishes and for your story, I hope my English is intelligible
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pellicle
Professional Dingbat, Guru and Merkintologist
Good morning
I had no real idea what warfarin would exactly entail, but I was confident I could master that. I was correct.
Its interesting and especially when you consider the motivations of the surgeons. I'm quite sure (for instance) that Dr G Stafford (who did my homograft) felt that the homograft was the best choice for me (and the alternative was a mechanical and warfarin). Further I'm sure he was inclined to the view that there was a possibility that the homograft as living tissue, would potentially last my life.
Dr Stafford is one of the authors on this paper (and Dr O'Brien was the surgeon who did my valve repair at age 10)
https://pubmed.ncbi.nlm.nih.gov/11380096/
However as you can see from that study, it emerged that their hope was not demonstrated in the evidence. Sure the valve was a good valve choice for a number of reasons, but it was not as (I know) they hoped; permanent. So even if I had not had the aneurysm (which btw the probability of that was something unknow to surgeons of Dr Staffords period) then the valve would have needed replacement within 2 or 3 years anyway.
If you asked Dr Stafford now he would probably say (for someone of the specific age group) what the data supported. Now that would include variables like:
in reality we all (sort of) are part of the grand experiment. We're born, we make choices and we die. Control over too much of this is an illusion. Something which I suspect you do actually see.
Best Wishes
I'm pretty happy to say that now that such was the case for me and as you know I'm still happy with all the decisions which were made for me when I was 10 and when I was 28 and got a homograft. When I had my 3rd I'm pretty confident that my decision was not based on being fed "incorrect biased data"; however it was clearly the advisory leaning for the surgeon.
I had no real idea what warfarin would exactly entail, but I was confident I could master that. I was correct.
Its interesting and especially when you consider the motivations of the surgeons. I'm quite sure (for instance) that Dr G Stafford (who did my homograft) felt that the homograft was the best choice for me (and the alternative was a mechanical and warfarin). Further I'm sure he was inclined to the view that there was a possibility that the homograft as living tissue, would potentially last my life.
Dr Stafford is one of the authors on this paper (and Dr O'Brien was the surgeon who did my valve repair at age 10)
https://pubmed.ncbi.nlm.nih.gov/11380096/
The homograft aortic valve: a 29-year, 99.3% follow up of 1,022 valve replacements
However as you can see from that study, it emerged that their hope was not demonstrated in the evidence. Sure the valve was a good valve choice for a number of reasons, but it was not as (I know) they hoped; permanent. So even if I had not had the aneurysm (which btw the probability of that was something unknow to surgeons of Dr Staffords period) then the valve would have needed replacement within 2 or 3 years anyway.
If you asked Dr Stafford now he would probably say (for someone of the specific age group) what the data supported. Now that would include variables like:
- bicuspid valve being linked with aneurysm risk
- age related risks
- warfarin adherence risks (and don't underplay the "Clinic side risks" because I deal with that a lot)
in reality we all (sort of) are part of the grand experiment. We're born, we make choices and we die. Control over too much of this is an illusion. Something which I suspect you do actually see.
Best Wishes
When I was diagnosed with a BAV, I don't think there were many options. I was told that 'in about 20 or 25 years, you'll need it replaced.' Before I had it replaced, my endurance was way down. I turned white after a little exertion. I had to put my hands on my knees to catch my breath (in all fairness, I had to do this in High School, and nobody seemed to notice that there was something wrong.
My case may have been more extreme than yours is, and in 1991, when I had my valve replaced with a St. Jude mechanical, I don't think there was any choice - other than a tissue valve. I don't know if they were doing repairs on BAVs at that time.
Good luck with your recovery.
My case may have been more extreme than yours is, and in 1991, when I had my valve replaced with a St. Jude mechanical, I don't think there was any choice - other than a tissue valve. I don't know if they were doing repairs on BAVs at that time.
Good luck with your recovery.
