I’m a 55 year old female. In 2019 I had open heart surgery for aortic insufficiency due to bicuspid valve. One year later I started feeling bad again, got in to cardiologist and had an echo which showed Moderate Aortic Stenosis! The echo right after surgery showed NO stenosis! I felt better 3 months after surgery than I do now. My cardiologist acted like it’s no big deal as he told me that eventually I’ll need surgery again to replace the valve! Has anyone else experienced this? I’m upset and scared
Aortic insufficiency surgery/ one year later moderate aortic stenosis
- Thread starter ToniT
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pellicle
Professional Dingbat, Guru and Merkintologist
Hi Toni
very sorry to hear you're in this situation ...
I read in your bio that you had a repair: open heart surgery Oct 2019 to repair aortic regurgitation due to bicuspid valve
it is as the cardiologist suggested, almost inevitable. I'm surprised that they didn't tell you this sort of thing at the time.
All you can do now however is watch and wait until the valve Structural Degradation moves to a point where surgery is needed.
As you're also BAV, has anyone done any measurements for an aneurysm? I ask this because BAV significantly increases your likelihood of aneurysm. Knowing this early is good because aneurysm is what usually forces another OHS even if the valve is OK.
I guess that nobody told me when I had my first OHS but all the constant monitoring after that sort of just made it obvious that I'd be doing it again in my life. I had 2 more.
Its rough but recovery happens and nearly 10 years later I'm living a "normal life".
Put significant dispassionate logical thought into your valve choice now and ask questions here.
Best Wishes
very sorry to hear you're in this situation ...
I read in your bio that you had a repair: open heart surgery Oct 2019 to repair aortic regurgitation due to bicuspid valve
it is as the cardiologist suggested, almost inevitable. I'm surprised that they didn't tell you this sort of thing at the time.
All you can do now however is watch and wait until the valve Structural Degradation moves to a point where surgery is needed.
As you're also BAV, has anyone done any measurements for an aneurysm? I ask this because BAV significantly increases your likelihood of aneurysm. Knowing this early is good because aneurysm is what usually forces another OHS even if the valve is OK.
I guess that nobody told me when I had my first OHS but all the constant monitoring after that sort of just made it obvious that I'd be doing it again in my life. I had 2 more.
Its rough but recovery happens and nearly 10 years later I'm living a "normal life".
Put significant dispassionate logical thought into your valve choice now and ask questions here.
Best Wishes
Assuming you got a biological aortic valve replacement, it most likely would require another surgery as they tend to last anywhere between 10 to 20 years. If you got a mechanical valve, then at your age it most likely would last your lifetime. The longevity for TAVR I think is still to-be-determined.
What did you have done?
1 year post-op with moderate aortic stenosis after any kind of replacement sure sounds concerning.
Did you reach out to your surgeon?
Do you perhaps have any of the below risk factors?
"Simplified Approach to Rare Causes of Early Bioprosthetic Valve Failure"
*Risk factors include younger age, enhanced immune response, hyperparathyroidism, diabetes mellitus, and mitral (as opposed to aortic) position. †Risk factors include a history of thromboembolic events, a sewing ring that is not yet fully endothelialized, and a lack of anticoagulation."
https://core.ac.uk/download/pdf/82688706.pdf
pellicle
Professional Dingbat, Guru and Merkintologist
Hi
I assumed from their bio that it was a repair, but one could read that either way: open heart surgery Oct 2019 to repair aortic regurgitation due to bicuspid valve
I assumed from their bio that it was a repair, but one could read that either way: open heart surgery Oct 2019 to repair aortic regurgitation due to bicuspid valve
I see Pellicle did some homework and read your bio (I didn't) that you had a repair.
pellicle
Professional Dingbat, Guru and Merkintologist
its unclear still, I read it that way but "repair" could mean the surgery to replace the valve too ... so it would be good for the OP to clarify. Either way what you wrote will be important in deciding where to go from here.
Hi @ToniT - After aortic valve replacement for bicuspid aortic valve my echocardiograms showed increasing pressure gradients and small effective orifice area of the replacement valve. After three years the gradients were, "in terms of numbers", in the moderate stenotic range and have stayed like that. My peak pressure gradient is 56 and mean gradient 35, and the valve area 0.72 (smaller than my bicupsid valve was). I have moderate patient prosthesis mismatch - this means the valve implanted is too small for my body size, hence the high pressure gradients. The valve I got was 19mm. Cardiac surgeon I saw for surgical assessment four years ago said we should not focus on the numbers but instead on the valve and my heart - that is whether the valve degenerates or my heart shows symptoms, ie abnormal thickening, hypertrophy, etc. So far the valve leaflets are fine, no deterioration yet, seven years after surgery. I am not as fit as pre-surgery, I never recovered to as fit as I was before surgery, I was fitter even the day before surgery than at any time post surgery as the valve is too small, but I'm here still 
Be good to know what your pressure gradients are and your valve area.
Be good to know what your pressure gradients are and your valve area.
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Hi @ToniT - After aortic valve replacement for bicuspid aortic valve my echocardiograms showed increasing pressure gradients and small effective orifice area of the replacement valve. After three years the gradients were, "in terms of numbers", in the moderate stenotic range and have stayed like that. My peak pressure gradient is 56 and mean gradient 35, and the valve area 0.72 (smaller than my bicupsid valve was). I have moderate patient prosthesis mismatch - this means the valve implanted is too small for my body size, hence the high pressure gradients. The valve I got was 19mm. Cardiac surgeon I saw for surgical assessment four years ago said we should not focus on the numbers but instead on the valve and my heart - that is whether the valve degenerates or my heart shows symptoms, ie abnormal thickening, hypertrophy, etc. So far the valve leaflets are fine, no deterioration yet, seven years after surgery. I am not as fit as pre-surgery, I never recovered to as fit as I was before surgery, I was fitter even the day before surgery than at any time post surgery as the valve is too small, but I'm here still
Be good to know what your pressure gradients are and your valve area.
Thank you for your response. Before the surgery they did testing and I didn’t have an aneurysm at that time. I did not know that bicuspid valves can cause this! Thank you for this information.
Hello. I had an aortic valve repair. My surgeon did mention that my aortic valve is quite small to begin with, but when he “repaired” it, there was no stenosis. I am calling my surgeon today. Thank you
Yes it was a repair to my aortic valve. Not replacement. Sorry I wasn’t clear
Sorry that I was not clear. It was a repair of my aortic valve, not a replacement
Hello. Very sorry to hear. I'm curious if your surgeon offered alternatives such as replacement tissue or mechanical valves at the time, and you declined? What facility and surgeon did the surgery? The "repair" did not last very long. That would really annoy me. I would seek other expert opinions and have them re-evaluate the pre-surgery echo's to see what they would have recommended.
My surgeon , Dr Marc Gerdisch at Franciscan Hospital Indianapolis told us if he could repair the valve that it would buy me 10-12 years of no blood thinners, reducing the risk for stroke. If he couldn’t repair, I did have choices for a valve and had chosen the Onyx valve. Today I called his office and was told that my cardiologist would have to refer me when he thinks it’s time for surgery! Very frustrating. I felt physically better a month after OHS than I do now, 17 months post surgery
pellicle
Professional Dingbat, Guru and Merkintologist
Hi there
firstly let me ask you this (because you use the word blood thinners in such a manner) : did you have some major concerns about it? Fears perhaps? Was the idea sold up to you as having the boogie man under your bed for the rest of your life??
secondly did he make >totally clear< to you about the possible minimum times, did he at least say "you are a good candidate for repair" or did he say "it could buy you up to 10 years of no blood thinners"?
Its all moot now but I'm always confused by people choosing to kick a can down the road for no long term benefit and for an actually certain worse outcome (a second surgery is always a worse outcome even if nothing goes wrong because you have to go through that again). I can sort of understand it if you'd been sold the lie on how horrific being on warfarin is. The short answer = "nope its pretty insignificant" (as long as you follow the plan).
lets set valve choice aside here for the moment and get back to where you are now. At this point it is pretty clear that you are not as good post surgery as you are now. How would you compare it to pre-surgery?
Ultimately all you can do is go along for the ride and perhaps push to have surgery a little earlier because "sooner is better than later" when you know its inevitable. Why? Because all the evidence (and well, just plain common sense) shows that you recover better from surgery when you're healthier.
Lastly on valve choice, I would say that if your inclined towards the On-x valve (onyx is this) because of their marketing claims of lower INR I would encourage you to seek actual patient experiences on that on this very forum. Its not a bad valve for sure, but its perhaps not the best either. It seems the only thing it really has in its favor is the salve for the minds of the people who are irrational about what difference 0.5 INR units makes to ones life (the answer is nil).
In the mean time please feel free to to fish around my blog on what I've written about life on Warfarin and managing INR
http://cjeastwd.blogspot.com/search/label/INR
Best Wishes.
firstly let me ask you this (because you use the word blood thinners in such a manner) : did you have some major concerns about it? Fears perhaps? Was the idea sold up to you as having the boogie man under your bed for the rest of your life??
secondly did he make >totally clear< to you about the possible minimum times, did he at least say "you are a good candidate for repair" or did he say "it could buy you up to 10 years of no blood thinners"?
Its all moot now but I'm always confused by people choosing to kick a can down the road for no long term benefit and for an actually certain worse outcome (a second surgery is always a worse outcome even if nothing goes wrong because you have to go through that again). I can sort of understand it if you'd been sold the lie on how horrific being on warfarin is. The short answer = "nope its pretty insignificant" (as long as you follow the plan).
lets set valve choice aside here for the moment and get back to where you are now. At this point it is pretty clear that you are not as good post surgery as you are now. How would you compare it to pre-surgery?
Ultimately all you can do is go along for the ride and perhaps push to have surgery a little earlier because "sooner is better than later" when you know its inevitable. Why? Because all the evidence (and well, just plain common sense) shows that you recover better from surgery when you're healthier.
Lastly on valve choice, I would say that if your inclined towards the On-x valve (onyx is this) because of their marketing claims of lower INR I would encourage you to seek actual patient experiences on that on this very forum. Its not a bad valve for sure, but its perhaps not the best either. It seems the only thing it really has in its favor is the salve for the minds of the people who are irrational about what difference 0.5 INR units makes to ones life (the answer is nil).
In the mean time please feel free to to fish around my blog on what I've written about life on Warfarin and managing INR
http://cjeastwd.blogspot.com/search/label/INR
Best Wishes.
By your surgeon saying "it would buy me 10-12 years of no blood thinners", did he mean that to be that you would require another surgery then to replace the repaired valve with a mechanical valve which would then require blood thinners?
If so, that doesn't sound right on at least 2 fronts:
1) Why plan on doing two surgeries, a repair in 2019 and then replacement with mechanical 10-12 years out, and not just do one surgery in 2019 with a mechanical replacement which potential would last your lifetime? Just because of anti-coagulation meds?
2) The expected longevity of bicuspid aortic valve repair is longer than that. I attached a link below of one study by Cleveland Clinic which states "Freedom from aortic valve reoperation at 10 years was 78%. Risk of reoperation was highest immediately after operation and fell rapidly to approximately 2.6%/year up to 15 years."
And from Dr. Lars Svensson: "So I still tell them 90% at 10-year durability. And if you look at those curves, the initial failures are early, so if they are okay 10 years after surgery, then after that the durability is excellent because the curve flattens."
Long-Term Durability of Bicuspid Aortic Valve Repair
The above study also has the below comment. Is this related to your situation perhaps?
"Of interest was the finding that gradients across the aortic valves decreased significantly after the initial echocardiograms taken immediately after repair. Clearly, there is a delicate balance between tightening the valve too much during repair, causing aortic valve stenosis, and leaving regurgitation. Thus, this finding is encouraging if some evidence of aortic valve stenosis is found after repair."
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