Tissue valve experiences

[G345]

Hiya my 30 year old son has decided on a tissue valve instead of the Ross procedure and was told there's a newer valve that lasts longer and can be done less invasively, he has severe aortic stenosis . Has anyone else had this operation with the latest valve we don't know very much about this and would be glad to hear others experience

[Hidden]

Hi Most of us on here have had OHS for AVR tissue or otherwise. Severe is the stage you have to get to with the stenosis before surgery is offered, as I was.

I’m sorry your son is having to go through this problem so young.

I see you’ve asked about less evasive surgery here before. Maybe the BHF can help you. They have very knowledgeable cardiac nurses and keep up with all the latest cardiac medical science. Telephone number on their web site. I hope someone on here will contact you if they can shed any light on your questions.

Best wishes to you and your son.

[G345 in reply to Hidden]

Thank you very kind of you to reply , best wishes to you too

[Tubbylardo]

My advice - for a 30 year old - have the metal valve.

It is proven technology and there are many people on this forum who have had metal valves for 25+ years.

If you have a tissue valve - regardless of which type - it WILL need to be replaced at some point - 5 or 10 years etc. Having been through OHS once I would be very reluctant to endure the trauma of a second go around. For this reason, I am glad my surgeon refused my request for a Resilla valve.

The only side effects with the metal valve - ticking and warfarin. Both are managable. You get used to the ticking after a while and I now find it useful. The warfarin is, for me, such a low dose that it doesn't cause any problems.

[G345 in reply to Tubbylardo]

Thank you I've tried talking him into having the metal valve but he said he couldn't cope with the ticking , but I'm glad it's worked for you best wishes

[Blackcatsooty]

Dear G345I was so fortunate to have a very well respected surgeon on my case.

He explained that tissue valves are improving a great deal, and so fast that there is no time to trial them.

And surgeons are reluctant to use untried valves.

I am 72 so the tissue valve should outlive me, but that’s not the case for a 30 years old.

An option is a mechanical valve.

My experience is no problems so far with a tissue valve. Mine is Edwards Resilia.

I listened to the surgeon and, as a privileged private patient, I also had a second surgeon who specialises in TAVi. I took their advice. After all, it’s the surgeon who will be spending hours on the procedure, so I listened to them.

Likewise, I listened to the advice about TAVi or OHS and they advised me OHS.

If one opts for TAVi it might fail and then OHS would be needed. OHS needs perhaps four weeks of extra recovery time, so I didn’t think that relevant.

Ross procedure not even mentioned to me, but as I say, I am old.

Colin

[G345 in reply to Blackcatsooty]

Thank you Colin much appreciated advice best wishes to you

[G345]

Thank you for your replys much appreciated best wishes to you

[Hidden]

Hi, picking up on other people's experience is difficult, but, for me it comes down to quality of life and expectations further down the line.

I was at a similar age (33) when I had my first AVR, and I also chose the Tissue valve. No regrets whatsoever, literally a life changer, but I did so in the knowledge I would need further surgery. It was a no brainer, as I planned for at least two more surgeries, each occasion with a Tissue.

The valve lasted 19 years before it needed replacing. Maybe I was lucky, I don't know, but, it sort of put my timeframe completely out of sync, so the next surgery was at age when I decided on a mech valve.

As it turns out, I had two surgeries in quick succession, so I now have mech AV and MVs. Again, no regrets, it was a decision based on my age and circumstances at the time. Warfarin has never been an issue, as for the ticking, compared to my natal valve it's as quiet as a dormouse.

If I could go back in time, I'd still make the same decisions and go for the Tissue at 33, more so, given the newer valve tech.

I wish your son well,

[G345 in reply to Hidden]

Thank you that's reassuring best wishes to you too

[Chappychap]

I have no medical qualifications but it might be worth your son factoring into his decision the cumulative risks of open heart surgery.

He will need to sign a consent form before the operation, and this form will likely say there's about a 2% chance of bad surgical outcome, such as a stroke or fatality during the operation. The legal requirement is for "informed consent", with the key word being "informed", which is why he'll be given the 2% risk statistic. The law says he needs to be properly informed about his decision.

It's worth reflecting for a moment on what a 2% risk really means. Unless someone lives an exceptionally adventurous life then 2% is the biggest risk that they'll ever experience. For example you'd have to climb Everest about three times to get to a comparable risk, and 2% is way higher than rolling up every journey you'll ever make in an entire lifetime and experiencing all that risk in a single day. Personally I still went ahead with open heart surgery as the rewards outweighed the risks, and I would expect the vast majority of people to likewise decide in favour.

However, that 2% is an average for all open heart surgery. Your son's risk profile is likely very different. The good news is that if he has no other medical conditions and is otherwise in good health, then as a very young man his risk profile will be much, much lower. I've seen data suggesting it might be even be closer to 0.3% than 2%. That's excellent news!

But from there on out the risk changes, and quickly.

A second open heart operation is far riskier than the first, and a third operation is in turn far riskier than a second. The risks of subsequent operations can quickly start climbing well above 2%. You can find out more if you dig into the EuroScore II research which is the basis for the 2% figure, it's open source data so it's all there, but it is quite mathematical in nature.

I'd suggest that your son discusses these future risk issues with his surgeon, and then makes his decision in the light of that conversation.

Good luck!

[G345]

Thank you for telling me all this I'd never have known to ask best wishes