Aortic stenosis op young man

[G345]

Hiya i have a 30 year old son with severe aortic stenosis it has never made him ill no medications no effects as far as we know but in 2 years went from moderate to severe . He started having appt with a consultant at the hospital and was told after listening to his chest that he should carry on his life as usual as he wouldn't need an operation till at least 50 then at the echocardiogram the lady said that if he were her son she'd want it done now . Then nothing for at least a year , next appt they gave him a couple of months to decide wether he wanted a tissue valve , metal one or the Ross procedure and was told the Ross procedure was probably the best as he won't need another operation and would last a very long time . He's worried about the tissue valve and having problems after 10 years and then the metal valve ticks and might also go wrong so he went to London to see the team to discuss the Ross procedure with hope that this was a good thing but was told he will be like a ticking clock as to how long it lasts and the information sheets for admission mention death a few times because of problems that could occur during open heart surgery . So I'm desperately trying to work out which op would have least invasion i.e. Keyhole rather than open heart or tissue valve through the groin mainly because they more or less said to take the health right valve to replace the bad left valve but that could also fail in some way and replace right valve with a tissue valve . So I'm thinking would it not be better to just do the tissue valve would it be the least risky and it the ten years maybe a new procedure might be found or is there another way to fix this . Sorry I'm having sleepless nights with worry any help would be wonderful

[Blackcatsooty]

I confess to never having heard of the Ross procedure.Exactly twelve month since i had a new valve. I went to a London hospital and they were not keen on the tissue through the leg. This is known as a TAVi. Tissue only.

The open heart op can be tissue or mechanical. They slightly preferred the tissue and i went with an Edwards resilia. Since then, the latest edwards can have a TAVi added at a later date.

The OH op is routine for the medical team. It isnt bad. I am 72 so recovery is slower, but i was amazingly well after four months.

The problem that doctors have is that they want valves that have years of testing and years of proof. But science is charging ahead. A real catch 22.

Before the op i had extreme fatigue, like 22 hours a day, so it was time to get the op.

Colin

[Astronomyrules]

Hi, I understand how worried you must be for your son. I had open heart surgery for a bi pass about 18 years ago. I was 50 and it was a fairly long recovery, but the operation was no way as bad as I or most, people fear. It is regarded as the 'gold standard' as far as heart surgery is concerned. In December of last year I had my aortic valve replaced by transapical TAVI, where the entry point is between the ribs as I have extensive PAD and a groin entry wasn't viable. As you know, in both cases a tissue valve is the only option. Recovery was much quicker than the OHS, though probably slower than using the groin as the entry point, and was similar to cracking a rib, not too bad initially as long as you dont' sneeze or laugh. Tissue valves are relatively new and I was told to expect a life of about 15 years after which the operation would need repeating and a new valve is inserted inside the last one. Valves are getting better all the time and no doubt in 15 years from now they will be better and proceedures will have moved on too. I haven't any experiences with mechanical valves, but many people say they are fine and once inserted are yours for life. You can even can do home tests for warfarin levels once things have settled down. I'm sure someone with a mechanical valve will reply to your post. I'm curious to know what the Ross proceedure entails. Whatever your son decides, after consultaion with his cardiologist/surgeon, it will be fine and he will have a heart which functions so much better. Warm wishes to you both.

[G345]

Thank you blackcat sooty and astronomy rules very kind of you to reply , you've given me a bit more faith in what he might go through , the Ross procedure is were they take the right valve out to take place of left and then replace the right with a tissue valve open heart surgery . He was told that this op would mean nothing needed to be done for a very long time but last week when he met the team that may do it one of them said once you have this done it's like a clock ticking before you need something doing he said the right one could go too big or something like that and the other might also need replacing so we're both feeling a bit lost . To me it doesn't make sense to use the right valve which is perfectly ok and end up with 2 faulty valves I think the tissue valve that lasts ten years would be less risky because the only reason he wanted a different option was he didn't want to have to be having more operations but it seems he will it's a lot for him to take in especially when his heart has never made him ill up to now . Thank you bye for now take care 🙂