Hello all.
My first post. Recommended by a friend who said he’d found this useful.
I was diagnosed with AS a while ago and am generally ok and asymptomatic apart from some breathlessness. At my last check I was offered the chance to be part of the Easy-As study under Dr Gerry McCann. I signed in and a couple of weeks ago I was told I was in and should get my operation within 3 months. Waiting for a date now. Anyone else had any experience with this?
Yes, quite a few of us have had had new valves installed by conventional surgery or TAVI (with the new valve being inserted through a valve near one's groin). The latter is for those considered too frail for the cooventional surgery. A three-month wait isn't bad, though it was longer with the West London hospital to which I was originally allocated.
There's not much more I can add at the moment, as you don't say which type of valve replacement you'll be having. In the meantime there's a list of previous threads in the drop-down list to the right (on my PC screen anyway - it may be different on a phone screen).
Wow that's good, never heard of that study before, how do you do it or do you have to be in a certain area?? I have moderate to severe aortic stenosis and regurgitation and will need valve replacement surgery in about a year or two x
The consultant told me about it. Web is at
www2.le.ac.uk/departments/c...
It’s a national study but I don’t know if it runs everywhere. There’s a random selection process with a 50:50 chance to get early surgery or just be part of the overall sample. The purpose is to compare those who get surgery early against those who wait until they are beyond “severe.” Hope that helps.
I found it at:
hra.nhs.uk/planning-and-imp...
Funny enough, it's funded by the British Heart Foundation. 😀
Do i contact them or do I wait for them to contact me? I have moderate to severe aortic stenosis does it have to be severe aortic stenosis to be eligible for the study?? ❤️
You should ask your GP or maybe consultant.
Arthur, sadly your link prompts this message: "Redirects from www2.le.ac.uk/... addresses have recently been decommissioned". Googling "Easy-As study under Dr Gerry McCann" leads to what I think is the Leicester University website you have in mind.
I think that I could have waited longer for my TAVI, even managing a careful six-hour walk a week before the op, but I found it stressful carrying my overnight bag for ten minutes or so from the boarding-house to the hospital
Thanks. Hope that works for people. I copied that link from the hard copy I got from the consultant with information about the study.
Interesting! I'd generally understood that once AS reaches 'severe' (even non-symptomatic) the expectation is that AVR is advised & would normally be scheduled within a few months (subject to local waiting lists). This trial suggests that half the participants would randomly be allocated to an alternative "expectant management" group, which basically implies that the Drs just wait & watch, potentially for some time ...!?
Speaking personally, I'd be grateful that you've been allocated randomly to the AVR group!
I am! It’s what I wanted.
My sister and I suffer from the same genetic valve disease that primarily affects the mitral valve. She lives in the States where many practitioners subscribe to "go early". She had hers repaired when she was 40.
I moved to Ireland in my 30s. The conventional wisdom here is "watch and wait". This drove my sister nuts. She also happens to be a nurse practitioner in a cardiac clinic, and she felt the Irish system should be fixing her brother.
Anyway, at 60 I showed LVH (which is the surgical indicator here for asymptomatic cases) and I had my mitral valve repaired. The funny thing is, I had moderate/severe aortic regurgitation by then, and they were able to do both in one go. So it worked out well for both of us.
(Mentally, though, I think it would have been easier to have it done and dusted early.)
I guess I'm not surprised at the difference in practice compared to US, although fear that the GB/Ireland approach is guided more by demand & waiting lists rather than clinical evidence?! In the case of the Trial mentioned in this thread, however, I'd understood that patients had already reached "severe" AS, so doing an AVR then is hardly "going early"? Conversely, I'd worry about those allocated to the random group who are left to "wait & watch?!
Interesting what you say about you & your sister's cases. My only personal experience is of AS & AVR - I was un-symptomatic & only diagnosed once already severe (bicuspid valve!), by which time it appeared my condition was beginning to deteriorate, so "wait & watch" was (fortunately) not an option! Incidentally, as I was only diagnosed & treated 'late' (age 69), that gave me the option of a Tissue valve (lifespan c 15 to 20yrs), which offers certain advantages over a Mechanical valve.
I'm not sure if Mitral valve repairs/surgery & 'regurgitation' raise different clinical treatment issues compared to AS/AVR?
In your sister's case, if she was 'repaired' presumably c20 yrs ago, is that holding up well, and/or is she also developing other valve issues in the meantime, as you have?
MVR and AS definitely have different clinical indicators, but they share a dichotomy when the regurgitation/stenosis is severe, but the patient isn't yet symptomatic.
In the case of MV regurgitation, there's the question of whether or not to wait for LVH.
And in the case of AV stenosis, there's the question of whether or not to wait for a high pressure gradient.
(In both cases, of course, other issues such as surgical risk might swing it one way or the other.)
Hopefully studies like the one mentioned here can provide more clarity on the answer to the second of those questions.
(Back 10 years ago I did send all the CDs of my echos/MRIs to my sister so she could have her surgeon review them. He reassured her that there was no clear answer; just different defaults on what was near enough a coin toss.)
Yes, my sister's repair was 21 years ago. She's doing excellently; no appreciable aortic valve issues. 🤞
Did you go with the tissue valve? I do envy my sister a bit that she doesn't have to deal with warfarin....
Good to hear that your sister's repair (& the aortic valve) are still doing well.
Yes, I had a Tissue AVR - Edwards Inspiris Resilia, which is still relatively new, but clinical trials indicate is holding up well, with limited structural deterioration to date during its trackable use in 'real' patients! When I was diagnosed with AS (age 69) I was initially very undecided whether to opt for Tissue or Mechanical. However, I had 2 separate consultant surgeon referral consultations, both of whom (unprompted) advised this Tissue valve. They also both said that the Resilia valve is a great substrate for a future TAVI replacement in later life, if needed. So the decision was much easier for me, as I was also persuaded by the lifestyle advantages of Tissue.
Incidentally, I actually had my AVR in Germany in the end (family links there), so have some limited experience of UK v German cardiology! So far, so good (fingers crossed) 2 years post-AVR!
aortic stenosis 
aortic stenosis 
SEVERE AORTIC STENOSIS
Aortic Valve Stenosis
Aortic stenosis and heart failure 
