I want to join the good-old mechnical Vs bio prosthetic valve debate with some info I got couple of hours ago.
Long story short, male 34 yo, diagnosed with bicuspid aortic valve about 5 years ago. By the end of 2017 I already had severe aortic regurgitation and severely enlarged left ventricle. February 2018 had the aortic valve replacement done and choose the edwards inspiris resilia valve.
Two three months ago I realised that I've started feeling worse again: breathlessness, tiredness, etc. Several visits to the GP, tweaked medication and eventually echo.
Here starts the interesting part.. Echo showed "signs of early degeneration of prosthetic valve and and grade 4 stenosis".
No idea what is going to happen next, waiting for an appointment with cardiologist.
Anyone with similar experience?
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Zabrallo
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Sorry to hear about the situation that has caused you to post. To date tissue valves have had a maximum lifespan of 10 - 15 years because of calcification - this equates to the lifespan of the donor animal. The Resilia valve is specially treated to give it an anticipated lifespan of up to 25 years. The speed with which stenosis has occured is worrying. Has your GP checked your calcium levels. Parathyroid problems, for instance, can cause them to massively elevated which if left can cause stenosis of arteries and valves, formation of gall and kidney stones, and weakening of bones. I am just putting this in the melting pot as I cannot help but feel something is not right. Please do update the forum when you find out more or what treatment is proposed.
Potential lifespan and possibly of TAVI when the times comes to replace the valve alongside the chance to avoid blood thinners were the main reasons why I chose it.
Calcium levels were never checked as the aortic valve was never even considered as a cause. Echo was done to double check the mitral valve which was playing up before surgery because of the "escentric regurgitant flow" from aortic valve hitting it. Turns out mitral valve is fine.
On the other hand about a year ago I switched from beta blockers (bisoprolol) to calcium channel blockers (diltiazem) because of the side effects of the former. At the moment I cannot find reliable info about what it does to calcium levels..
To my knowledge CCIs do not affect calcium levels. I have had two and had bad side effects with both. For a BP I would have suggested an ACE inhibitor. I think it is very important to have calcium levels checked if only to eliminate them.
I am sorry to hear that you face this worry after such a short period of time.
I have just been discharged home having had my tissue valve replaced after 5 short years. The valve began to 'fail' after 3 years and it has taken some time to arrive at surgery - but that is another story.
My valve was monitored annually and the gradients (the mean flow across the valve) gradually increased - I understand that the valve was never really satisfactory and showed signs of difficulty fairly quickly. I was told that the replacement valve was too small for my needs. My original valve was bicuspid, the replacement was 21mm and what was needed was a 23mm valve in order to facilitate a TAVI at a later stage. Hopefully not for another 20 years (and as I am 66 years now, maybe never). This new one is an Inspiris valve. I also had my aorta enlarged to accommodate the new valve.
Like you I was shocked and worried when I first learned that the valve was failing.
In light of your age, conversations with cardiologists and surgeons about the best way to proceed are important - and you and they may need to have the conversation about tissue vs mechanical valves. I agree with Michael - all necessary checks to look at underlying risk factors become critical. However, you will need to be guided by the medics.
Please keep us posted with your progress and good luck in your consultations with the medics.
Thank you for sharing your story. Can I ask why it took so long to replace the prosthetic valve and what was the main factor - the symptoms you experienced or the test results (gradients etc)?
Brief answer: the length of time had to do with waiting lists.
The gradients were the factor precipitating action. Cardiol took to MDT and the consensus was to re do surgery. The thinking appeared to be that my prosthetic valve was too small for my needs and should be replaced with another larger valve and my aorta enlarged.
At the time I was marginally symptomatic, but became increasingly so as time wore on.
I had my first AVR op at the age of 52, having been diagnosed with a heart murmur at 16 and the regurgitation gradually getting worse. Unfortunately my valve started to leak within a couple of years but don’t know why and at 59 I had my second AVR. This time I went for a mechanical valve, after discussing it with my surgeon. I had to have my spleen removed 18months before when it went rogue and started killing my blood cells instead of cleaning them. As I now have a compromised immune system we decided a mechanical valve reduced the risk of a further heart op.
Hello, to be honest I prefer not to share this info publicly because it might look like I am blaming the hospital or surgeon - I think they did an excellent job..
Thank you very much Zabrallo for responding to my query. I fully respect your decision. As a matter of interest I had my Inspiris Resilia Aortic Valve operation at the Harley Street Clinic in May 2018 and so far so good!
Hi, I just noticed your reply. I had a Inspiris Resila Aortic Valve fitted on 11/19 and so far so good. Not sure of the longevity but let's hope it keeps on keeping on.
I would contact Edwards about the valve if it were me. They responded very quickly to me when my pressure gradients started rising lots after one year - not their Inspiris Resilia valve I hasten to add but their Magna Ease valve.
A cardiologist, who is a manager in Edward's Product Safety department, contacted me, phoned me a couple of times, asked how I was and the outcome of investigations. My mean pressure gradient is in the mid 30’s but the valve is not degenerating.
Hi Zabrallo. Sorry to hear this. I had an Inspiris in December and while all seems fine for me so far your post raised the hairs on the back of my neck! So hope you get to the bottom of things and things get sorted for you. Fingers crossed. Btw think you were quite right not to name hospital/surgeon. I've in previous posts named my hospital - Guy's and St Thomas's - as have nothing but praise but one of the guidelines on this site is we shouldn't name individual clinicians, for fairly obvious reasons, so good call! But keep us posted how you're doing and, as I say, we're all rooting for you. Nic x
Hi Zabrallo, just wondering how you are getting on following the early signs of valve degeneration, what were the findings/has any action been taken? Your story is very similar to mine.....bicuspid aortic valve, severe regurgitation, enlarged left ventricle....I chose to have the inspiris resilia valve fit when I had my op in February 2019 (aged 38)!
Well it looks like the test results are not that straightforward.
After the first echo Ive been told that there are the signs of early degeneration because one of the valve leaflets was "flapping" like a flag in the wind and "hemodynamics of stenosis" (basically it does not open properly anymore). Different doctor disagreed with that and ordered another echo. He thinks that condition of the valve is ok and the stenosis is caused by "patient valve mismatch" (valve is too small for me) and/or subaortic stenosis (aparently you can have some sort of mimbrane to grow after the surgery directly underneath the valve which is obstructing the flow). Basically further diagnostics is required, my next appintment is at the end of the April...
If it turnes out that valves structure is fine and it is not "early degeneration" I will pont an update here.
Hey, things got delayed quite a bit because of the covid. I had an appointment with surgeon postponed and I only had yesterday. He thinks it's "early degeneration" rather than anything else and classified it as a severe stenosis which means that it needs to be redone asap.
Aparently it quite unusual for the valve to deteriorate so quickly therefore they will have a meeting next week with other surgeons to discuss my case. My next appointment is in three weeks, he'll let me know if they want further diagnostics or I am going straight to the waiting list..
Thanks for your update Andy, look forward to hearing how you get on, all the best. I do triathlon so put my ticker through some grief, it's been just over a year now since my op and when I am exerting myself in training I am getting a sensation that was present before the op (i.e. blood regurgtitating back into the heart). This may well not be the case, however I could do with getting it checked out. My question to you therefore is how did you go about getting referred for an echo? Did you go to GP and then get referred, or go to cardiologist, or contact surgeon? Since getting discharged from surgeon after my 6-month checks I am not entirely sure who I should be dealing with!
Hello, I had my Inspiris Resilia valve implanted in Jan 2019. I think the valve may be too small for me, it is 21mm and the opening immediately after surgery was just 16mm, so basically mild stenosis right away. Before surgery it was 0.8mm so of course I do feel a lot better than I did then.
My gradients increased after surgery too, but seems to have stabilised. I was seen this Jan and my cardiologist said she will see me again in a year's time. I'm wondering if there is some sort of scarring or whether it is related to the small size of the valve. It would be good to get some answers.
My first hospital recommended the Ross Procedure but I felt very nervous about it so got a second opinion. The second surgeon I saw said that Ross Procedures can be a "disaster" (his words!) and that he deals with redos of them. He recommended the Inspiris.
Making these decisions is so hard. It is hard not to think about 'What If'. Nothing is garanteed.
When my echo came back showing that the valve is not opening well and the resulting pressure gradient is three times the norm (65max/35mean) I`ve been told that it looks like "early degeneration" of the valve.
More tests followed and the next theory was a "patient valve mismatch", however, my valve is 25mm, and according to calculations they`ve done later it suits my body complexity vell.
Next, it was thought that it might be a clot or subaortic stenosis (scarring or a membrane) underneath the valve which is obstructing the flow. I`ve been put on strong anticoagulation in case of a clot and have had the CT angiogram to investigate further. Test results didn't show anything - no clot, no other suspicious tissue.
Basically, on my last appointment, my cardiologist said that the reason for the narrowing of the valve and resulting high-pressure gradient remains uncler. He said they will write a letter to the valve manufacturer to ask if it could be an issue with the valve not related to the degeneration.
I am wondering if there more people out there who have similar issues with Inspiris Resilia - i.e. it not opening well.
Can I ask what were the symptoms you experienced before the surgery - did you get any chest pain/discomfort and have the symptoms improved after surgery?
Hi, just been reading posts about the inspiris valve, sorry to hear about you failing valve, have you got any update on your condition and have you had a re op done. Regards Presely.
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To date tissue valves have had a maximum lifespan of 10 - 15 years because of calcification - this equates to the lifespan of the donor animal. The Resilia valve is specially treated to give it an anticipated lifespan of up to 25 years. The speed with which stenosis has occured is worrying. Has your GP checked your calcium levels. Parathyroid problems, for instance, can cause them to massively elevated which if left can cause stenosis of arteries and valves, formation of gall and kidney stones, and weakening of bones. I am just putting this in the melting pot as I cannot help but feel something is not right. Please do update the forum when you find out more or what treatment is proposed.
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First few days after Aortic Valve Replacement
