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francie12

francie12

Well-known member
Joined
Sep 4, 2004
Messages
377
Location
Fairfield, Iowa
I was so grateful to this forum 20 yrs ago when my 11 yr old son was diagnosed with a BAV and dilated asc aorta. Now my son is 31 yrs old (!!), and I’m back. It is nice to see the forums going strong and to recognize some familiar names who are now out of the ‘waiting room’ but still here helping others. This wonderful place is still doing so much good.
At this point, my son is 6’2” and relatively healthy, with the aortic valve regurgitation still moderate, but his ascending aorta measurement is now at 4.6. I am seeking out the experience of others regarding both the timing of surgery and the value of second opinions. He lives only an hour and a half from the Rochester Mayo Clinic.
Of course, at age 31 he is the captain of his own ship now, but I’ve always wanted to stay informed and act as a support for him for when he has questions. He has stayed on his yearly echo schedule, but due to insurance difficulties he just opted for the standard echo over the recommended MRI. If anyone has a similar situation, BAV and aorta at 4.6, past or present, and would like to share their experience that would be great. He is going to share the other details of his last echo when he visits this weekend.
 
I can't speak to the ascending aorta but I had a BAV and was the same age as your son when I had to have it replaced. I was diagnosed with a BAV at age 25 and never had any issues until it needed to be replaced. I actually missed my annual echo due to switching cardiologists and me being an ***** about it, but over 2 years my aortic regurgitation when from being mild to severe with a severely dilated left ventricle. I had the operation about a month later. I was a (somewhat serious) marathon runner at the time and was very fit so I didn't think anything was wrong. It sounds like your son is staying on top of it with his annual checkups but I would reiterate to him to stay vigilant. My exercise habits at the time may have sped up the inevitable but I didn't think it would deteriorate as quickly as it did. Whenever he does need the valve replaced I would push for a mechanical valve at his age. I chose to go with a tissue valve and now at age 39 I'm looking at a second operation in the not-too-distant future. The maintenance-free years have been nice but in hindsight I wish I had gone with a mechanical valve to minimize the chances of a follow up operation. Best of luck to you and your son!
 
Hi

so, based on an older post of mine I'll answer your call from the angle of having been the son. For context I'm 59 now and mum passed some years back. Thus for me this has been a journey which is inextricably woven into the carpet of my life (unlike Mum who only got dropped into it when her son was diagnosed).

So, first a post I made some years back which was to another mum with a child of a much younger age (she was just starting your journey)

https://www.valvereplacement.org/threads/so-upset-my-baby-has-bav.42802/page-2#post-786328
francie12 said:
At this point, my son is 6’2” and relatively healthy, with the aortic valve regurgitation still moderate, but his ascending aorta measurement is now at 4.6. I am seeking out the experience of others regarding both the timing of surgery and the value of second opinions. ,,,
Of course, at age 31 he is the captain of his own ship now, but I’ve always wanted to stay informed and act as a support for him for when he has questions. .... If anyone has a similar situation, BAV and aorta at 4.6, past or present, and would like to share their experience that would be great.
Click to expand...

So from my perspective now (at 59) I can say that I now see the "connective tissue disorder" as being the disorder and bicuspid valve and eventually aneurysm as symptoms or manifestations of the "disease" {note: I subscribe to the origins of the word dis - ease ; not the modern connotation of "infectious disease" (and its bacterial / viral origin)}. I see that as someone who has that disease (which is genetic) its a lifetime signup. I only get out of this when they lay me to rest.

To the points
4.6 is where you'd want screening. I recommend no longer relying on Echo studies and reminding your son that saving money is not the right evaluation of value here.
From
https://www.anzsvs.org.au/patient-information/aortic-aneurysm-screening/
For aneurysms of 4.5-4.9cms scans would be at 6 monthly intervals. For AAAs 5-5.4cms scans at 3 monthly intervals are needed.​

Second opinions ... we have an AMA here in Australia (where the first A is the only difference) and how we do things in Australia vs the USA is both similar and different. Some things you do (like advertising and financial motivations for practitioners) is plain illegal here (be deregistered sort of illegal). Such things as direct marketing of valves to a naïve audience like the general public are illegal here.

So, I've never felt the need for a second opinion on my surgery (I've had 3 if you haven't already checked my bio / about section), this is because I have stayed with the first hospital that did me as a paediatric patient. TBH they are in my mind undisputed leaders in CardioThoraccic surgery in my state (and probably my country), they've even done the work on the occasional American Surgeon who wanted my surgeon to do him. Make of that what you will.

Opinions are just that. I'm quite an expert in a couple of topics, so is one of my friends (different topics). He has been called upon to be an expert witness in court on a highly technical matter (physics domain) and the other group had an equally competent technical expert who was presenting a different opinion.

What I'm saying here is that just because you're and expert doesn't mean you are always in agreement.

As a kid I learned how to navigate by triangulation on a map; intersection of points (think Venn diagrams).

Timing ... be guided by the above recommendations and your surgical team, but it sounds like it'll be a year.

Sorry if that's all too detailed. I call that "doing due diligence" and "respecting the memory of my mother and what she meant to me" (and knowing similar exists between you and your son.

Best Wishes
 
pellicle said:
Hi

so, based on an older post of mine I'll answer your call from the angle of having been the son. For context I'm 59 now and mum passed some years back. Thus for me this has been a journey which is inextricably woven into the carpet of my life (unlike Mum who only got dropped into it when her son was diagnosed).

So, first a post I made some years back which was to another mum with a child of a much younger age (she was just starting your journey)

https://www.valvereplacement.org/threads/so-upset-my-baby-has-bav.42802/page-2#post-786328


So from my perspective now (at 59) I can say that I now see the "connective tissue disorder" as being the disorder and bicuspid valve and eventually aneurysm as symptoms or manifestations of the "disease" {note: I subscribe to the origins of the word dis - ease ; not the modern connotation of "infectious disease" (and its bacterial / viral origin)}. I see that as someone who has that disease (which is genetic) its a lifetime signup. I only get out of this when they lay me to rest.

To the points
4.6 is where you'd want screening. I recommend no longer relying on Echo studies and reminding your son that saving money is not the right evaluation of value here.
From
https://www.anzsvs.org.au/patient-information/aortic-aneurysm-screening/
For aneurysms of 4.5-4.9cms scans would be at 6 monthly intervals. For AAAs 5-5.4cms scans at 3 monthly intervals are needed.​

Second opinions ... we have an AMA here in Australia (where the first A is the only difference) and how we do things in Australia vs the USA is both similar and different. Some things you do (like advertising and financial motivations for practitioners) is plain illegal here (be deregistered sort of illegal). Such things as direct marketing of valves to a naïve audience like the general public are illegal here.

So, I've never felt the need for a second opinion on my surgery (I've had 3 if you haven't already checked my bio / about section), this is because I have stayed with the first hospital that did me as a paediatric patient. TBH they are in my mind undisputed leaders in CardioThoraccic surgery in my state (and probably my country), they've even done the work on the occasional American Surgeon who wanted my surgeon to do him. Make of that what you will.

Opinions are just that. I'm quite an expert in a couple of topics, so is one of my friends (different topics). He has been called upon to be an expert witness in court on a highly technical matter (physics domain) and the other group had an equally competent technical expert who was presenting a different opinion.

What I'm saying here is that just because you're and expert doesn't mean you are always in agreement.

As a kid I learned how to navigate by triangulation on a map; intersection of points (think Venn diagrams).

Timing ... be guided by the above recommendations and your surgical team, but it sounds like it'll be a year.

Sorry if that's all too detailed. I call that "doing due diligence" and "respecting the memory of my mother and what she meant to me" (and knowing similar exists between you and your son.

Best Wishes
Click to expand...
I remember you, pellicle! Thanks so much for your reply. My son gets here tomorrow for a visit. The first thing will be to see what he says about his insurance situation. The last I heard, the insurance company is fighting with the hospital to see who will cover the cost of his last echo. From what I’m seeing the adult congenital heart clinic my son goes to is a little behind the latest thinking in follow up. At 4.6 asc ao, it seems like he should be on 6 mon follow up as opposed to one year, even though he is very tall. I would love for him to get his MRI at the Mayo Clinic, and I’m hoping he’ll allow me to pay for it if that becomes necessary. Of course the ideal would be a decent insurance policy at a good company! (I saw your horse pics. I have horses too!)
 
pellicle said:
Probably doesn't matter where he gets the MRI done (or a CT with contrast), as long as its done and evaluated.

Best wishes.
Click to expand...
All good news this weekend. My son has a better insurance company/policy now, and he now lives an hour and 15 min away from the Mayo Clinic. He’ll be switching to a new adult congenital specialist anyway, so Mayo Clinic it is. Hope they can schedule him in for his next follow up in August. MRI this time. Thanks for your responses. I don’t have anyone to talk about this, and it really helps!
 
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