Extreme Anxiety, Minimally Invasive, Ross Procedure, and Life Expectancy

[Projohta]

30 year old BAV patient with mild to moderate regurgitation here. I have been dealing with extreme anxiety towards my heart, hoping some of you wonderful people can help.

1. The Ross Procedure sounds really good if I need to get surgery while I’m in my younger years. Why don’t more people in America use it? It’s much more common in Europe. My Cleveland clinic cardio said I could easily still make it another 25 years before needing surgery, does that sound right to you all?

2. My understanding is that TAVR isn’t used on regurgitation, only stenosis. but would I still potentially be a candidate for other minimally invasive techniques? Cleveland clinic does a ton minimally invasive now, so just making sure I could be a candidate for that(really intrigued by quicker recovery time) and that TAVR isn’t the only type of minimally invasive. J-incision is different than TAVR, no?

3. Are there any encouraging studies or stories from your cardio about life expectancy? I see studies that say no effect to life expectancy after BaV, then others that say it’s significant if you have the surgery as a young person. But those studies seem really flawed(I’m thinking of the new huge Swedish study everyone’s reading).

could really use some positivity on this one, so please consider bedside manor and thank you for your time .

 

[ATHENS1964]

At the age of 30 and I was found to have mild moderate regurgitation I had surgery in August at the age of 58. I wish you that the surgery is late and by then a lot will have changed.

 

[tom in MO]

1. To me I wanted one and done at age 55. I'd had other surgeries and did not enjoy them or the disruption it does to your life. Plus, my job is not the most secure, so I didn't want to bet on good insurance and a generous disability program for future surgeries. I wasn't offered the Ross procedure, but I believe that's 2 valves impacted and a future replacement. I wouldn't be comfortable with that.

2. TAVR was not available to me, but tissue was. I went mechanical for the one and done concept. Warfarin's biggest impact on me is not being able to take NSAIDs for arthritis and other orthopedic issues.

3. With my St. Jude mechanical both my surgeon and cardiologist told me I would pass on due to something other than my mechanical valve.

A modern philosopher said that if a choice is difficult, that means both paths have equal merit. Take heart in that since you then cannot make a wrong choice...

For anxiety I like exercise, good movies and rote prayer. The rosary works for me. The occasional cigarette helps, but I cannot do that anymore

 

[PAN]

Hi there,

If your condition is mild , youre feeling well and the cardiologist is indicating surgery a good distance down the road, I wouldn't worry so much. You will go through phases obsessing about it but for the most part live your life while you feel good. Easier said than done at times but remember, they have reviewed your condition and given you a green light for quite some time.

The Ross is gaining some favour again it seems but still makes up a very small percentage of all AVR procedures. Less than 1%. You will find papers that indicate a late stage advantage of the ross vs mech valve. You will also find papers that say the ross is equal to mech valve replacement when accompanied by optimal anti coagulation. That means weekly home testing and owning your treatment. It is a choice I am mulling over myself. as with all papers the devil is in the detail

If I had the green light you have and potentially 25 years until surgery. I would have a beer to celebrate and quickly forget about it. In time I hope you will to. Keep your echos up to date and take care of yourself. It will be fine

All the best

P

 

[Projohta]

I couldn’t be more thankful for the responses so far. They went a LONG WAY in making me feel better. Wow.

does anyone know if regurgitation typically requires intervention at an earlier age than Stenosis?
Thank you again, very much.

 

[DDT77]

Projohta -
I think there have been a few visitors with similar queries to yours. I had Ross near age 20 for BAV. AVR with On-X near age 40 due to Aortic aneurysm. Warfarin addict for about 3 years now.
Looking back, not sure I would have gone Ross again. Have now had two OHS, and still have a calcifying pulmonary valve, which will likely require some action in future (not sure what, however - cross that bridge when I need to).
If given choice now, I would lean toward mechanical, (with reinforcement of ascending aorta - to mitigate potential need of Reop in future due to aneurysm - a learning in last 25 years). Angst of anti-coagulants is overdone. Many young ladies take a pill a day, different consequences for different pills, and missing a dose of warfarin might have less impact that others...

TAVR would not be good choice in cases of regurgitation due to dilation of aortic root, just expand it quicker. if stenotic, then root might be less compliant. However, TAVR does not last long - so i don't think it is recommended unless you have been retired for a few years already...

Studies can indicate averages. Don't be average, live life the way you want. Take advantage of the opportunities present.

 

[dornole]

I’ve had moderate regurgitation for 18 years now with zero change. Your job is to get echos as directed and live your life.

 

[Paleowoman]

Hi @Projohta
My bicuspid aortic valve murmur was first heard when I was 25 but I didn’t get any more echos, apart from when I was pregnant, until I was 53 when the murmur got worse, then I started getting annual echos with the pressure gradients followed. When the pressure gradients suddenly rose more steeply echoes were increased to six monthly. I had the valve replaced when I was 60. The surgeon had planned to do “minimally invasive” surgery, that is a “mini sternotomy” but in the event she had to do standard sternotomy because she couldn’t access my aortic valve at the level where she was expecting it.

So the answers to your questions are that yes, it can be realistic that you have another 25 years before needing surgery, and that you could have minimally invasive surgery but it may or may not happen - and “minimally invasive” surgery is still open heart, still cutting the sternum but just not so much as a full sternotomy. But if your valve does not need replacing for another 25 years who knows what surgical techniques they’ll be using then.

As for TAVI - that is not a long fix, it’s generally used for elderly patients, there are no longevity studies on it. But I wouldn’t even think about it now if the cardiologist you saw said you could have another 25 years before surgery, goodness knows again what techniques or valves will be available then.

Try to put all this behind you for the moment and keep any cardiology appointments you have over the years, and live as healthily as you can

 

[Maineiacs]

30 year old BAV patient with mild to moderate regurgitation here. I have been dealing with extreme anxiety towards my heart, hoping some of you wonderful people can help.

1. The Ross Procedure sounds really good if I need to get surgery while I’m in my younger years. Why don’t more people in America use it? It’s much more common in Europe. My Cleveland clinic cardio said I could easily still make it another 25 years before needing surgery, does that sound right to you all?

2. My understanding is that TAVR isn’t used on regurgitation, only stenosis. but would I still potentially be a candidate for other minimally invasive techniques? Cleveland clinic does a ton minimally invasive now, so just making sure I could be a candidate for that(really intrigued by quicker recovery time) and that TAVR isn’t the only type of minimally invasive. J-incision is different than TAVR, no?

3. Are there any encouraging studies or stories from your cardio about life expectancy? I see studies that say no effect to life expectancy after BaV, then others that say it’s significant if you have the surgery as a young person. But those studies seem really flawed(I’m thinking of the new huge Swedish study everyone’s reading).

could really use some positivity on this one, so please consider bedside manor and thank you for your time .

Hi
If your at Cleveland Clinic., that’s the Gold Standard. I’m just north of Boston. And I’m coming there. Lars Svensson is your AORTA Guy.
I have a BAV, at 55 just had it replaced. As long as your quality of life is happy. Wait.

 

[pellicle]

1. The Ross Procedure sounds really good

Personally I can't see how the Ross sounds good in any single way.

Start with one diseased valve, and up with two valves now diseased. One a prosthetic which has a limited life the other your own valve, damaged and set up to work in a location it was not intended for?

And why? To avoid warfarin? To allow surgeons to do more challenging and complex surgeries?

 

[Projohta]

I hear you Pellicle. And really value your knowledge/opinion. Not saying I totally disagree, but I can’t disregard all the studies. I think it’s really only to be considered in young patients. But there have been lots of recent studies from some of the biggest names in Cardio (Specifically Mount Sinai) showing the potentially huge benefits. Especially in keeping life expectancy equal to that of the age/gender matched general population.

I think if people see AA’s coming down the road, that plays a big part. Arnold’s path seems to be pretty ideal for many. Especially with re-op outcomes SO much better in recent years.

 

[pellicle]

Hi

And really value your knowledge/opinion. Not saying I totally disagree, but I can’t disregard all the studies.

send me a study that shows that after 29 years SVD is better than if you'd had a mechanical?

let me revise and comment on my own history

1974 ish - valve operation to do what is called valve sparing, I was 10 and technology was WAY less developed than now

1992 - aortic had become calcified (18 years of youthful adventure later) and required a replacement. My surgeon happened to specialise in Homograft valves and felt that I'd do better with that than a bioprosthesis (probably likely to last max 10 years at that agegroup in that time of history)

2011 - mechanical valve and not unexpectedly an aneurysm repair (with a graft) and something like 19 years duration, life in multiple continents and countries, motorcycling, skiing, rock climbing ... pretty much a perfectly "normal" life.

Now what changed between 1974 and 1992 is that I'd gone from childhood to adulthood which is a significant aspect and a strong reason for a valve that can grow with you

Between 1992 and 2011 what changed was the advent of reliable, cheap and simple self testing, so in the time between 2011 I've been also back skiing, travelling and living abroad for years at a time; stuff which were I on warfarin as per the pre 2005 world I simply would not have been able to do.

So, I say: make decisions based on:

• current modern available technology
• your present age and state of health
• other co-morbidities
• the honest and objective appraisal of long term effectiveness (15 years and you're off the surgeons radar, but even now at 56 I'd like to get another 15 years and without another operation thanks all the same).

 

[LondonAndy]

30 year old BAV patient with mild to moderate regurgitation here. I have been dealing with extreme anxiety towards my heart, hoping some of you wonderful people can help.

I can't comment on things like Ross procedures and TAVR etc, but I really feel for people who have such strong anxiety issues. My neighbour had this, and it seemed to me that the effect it had on her life was quite dramatic, ultimately contributing to her sad and early death in April this year. Clearly it was not her fault that she suffered with this, but if there is counselling or any other kind of help to reduce it I urge you to take those options. The fact that you may be worrying about something that won't happen for many years, as with Athens1965's experience, doesn't help - with me my aortic valve replacement was something of an emergency, so no time to worry!

Clearly research such as you are doing now and getting facts is good, but I suspect that anxiety moves on to new issues once the first point is satisfied, and should not be dismissed.

 

[slipkid]

does anyone know if regurgitation typically requires intervention at an earlier age than Stenosis?
Thank you again, very much.

I do not believe so but I don't know. My heart murmurs were detected when I was still in like junior high. I only found out I had not one but 2 leaky/regurgitating valves when I was in my 30s. Even then I was told they were of no concern and not to worry about it. They SHOULD have told me to get routine echos every couple years to make sure they don't get worse but didn't even bother to do that (gotta love Drs).

It was only when I collapsed at age 58 with heart attack and had emergency OHS that they decided to replace my aortic valve for "moderate calcification" (along with doing a double bypass). It was during recovery from all that that I learned why I had a leaky aortic valve all these years - and that it was bicuspid instead of tricuspid. I don't remember what the deal is with my other leaky valve and I am not even sure which one it is, and am not concerned about it.

If you're not suffering ill affects from a leaky/regurgitating valve I don't think they want to touch it.

 

[sylviayasgur]

Everyone here has a point, but in the end, i believe it's a very personal choice. My father had a mechanical valve and took coumadin for decades. My husband opted for a Ross procedure almost 20 years ago and had to redo his AV two years ago.
Both were/are very pleased with their choices. Ultimately, regardless of your personal choice, it's life saving_ neither better or worse.

 

[pellicle]

Ultimately, regardless of your personal choice, it's life saving_ neither better or worse.

a point often cited, however that is only the case for "having vs not having" the surgery. Yes, all surgeries save your life, but each has a specific advantage set (some have nothing practical and the advantages are emotional). When we have heart valve surgery (the first time) we exchange valvular heart disease for prosthetic heart valve disease. Each has differences, but we do get to choose our posion.

An excellent example is Harriet, she was persuaded to have a mechanical despite her surgeon knowing she had a predisposition to GI bleeds ... that was a true horror trip for her (I hope she's still with us).

Analyse the facts, make good decisions for yourself and the actual medical and anatomical factors (including your age)

 

[pellicle]

with extreme anxiety towards my heart

actually I'm not sure if this helps, but it can't hurt to read a little Jung and reflect:

 

[newarrior]

30 year old BAV patient with mild to moderate regurgitation here. I have been dealing with extreme anxiety towards my heart, hoping some of you wonderful people can help.

1. The Ross Procedure sounds really good if I need to get surgery while I’m in my younger years. Why don’t more people in America use it? It’s much more common in Europe. My Cleveland clinic cardio said I could easily still make it another 25 years before needing surgery, does that sound right to you all?

2. My understanding is that TAVR isn’t used on regurgitation, only stenosis. but would I still potentially be a candidate for other minimally invasive techniques? Cleveland clinic does a ton minimally invasive now, so just making sure I could be a candidate for that(really intrigued by quicker recovery time) and that TAVR isn’t the only type of minimally invasive. J-incision is different than TAVR, no?

3. Are there any encouraging studies or stories from your cardio about life expectancy? I see studies that say no effect to life expectancy after BaV, then others that say it’s significant if you have the surgery as a young person. But those studies seem really flawed(I’m thinking of the new huge Swedish study everyone’s reading).

could really use some positivity on this one, so please consider bedside manor and thank you for your time .

You are still a kid yet very wise--keep up the echoes and cardiac and other self care such as diet, exercise, meds, screenings and meditation..With all luck many years away from issues or maybe never

 

[Bmorgan4]

You are still wa kid yet very wise--keep up the echoes and cardiac and other self care such as diet, exercise, meds, screenings and meditation..With all luck many years away from issues or maybe never

Re: Swedish study see attachments.

 

[Bmorgan4]

30 year old BAV patient with mild to moderate regurgitation here. I have been dealing with extreme anxiety towards my heart, hoping some of you wonderful people can help.

1. The Ross Procedure sounds really good if I need to get surgery while I’m in my younger years. Why don’t more people in America use it? It’s much more common in Europe. My Cleveland clinic cardio said I could easily still make it another 25 years before needing surgery, does that sound right to you all?

2. My understanding is that TAVR isn’t used on regurgitation, only stenosis. but would I still potentially be a candidate for other minimally invasive techniques? Cleveland clinic does a ton minimally invasive now, so just making sure I could be a candidate for that(really intrigued by quicker recovery time) and that TAVR isn’t the only type of minimally invasive. J-incision is different than TAVR, no?

3. Are there any encouraging studies or stories from your cardio about life expectancy? I see studies that say no effect to life expectancy after BaV, then others that say it’s significant if you have the surgery as a young person. But those studies seem really flawed(I’m thinking of the new huge Swedish study everyone’s reading).

could really use some positivity on this one, so please consider bedside manor and thank you for your time .

Hi - I am in a similar place as you. 36 year old (competitive cyclist) with incidental finding of BAV. Mild regurg, no stenosis, no aneurism or dilatation. My cardiologist reported high confidence that intervention won’t be required for 10-15 years based on what we know now. As we continue to collect annual echo’s, that may even push out. The averages would say mid 50’s is most common for intervention. But some are lucky to push out further and anywhere between 20-50 percent of people never need intervention. I know it is hard, I also struggle. I always lean back on more recent data that life expectancy for us BAV folks is equal to that of the general population. We are blessed to have the opportunity to live a life of gratitude, understanding that every day is a gift. The life expectancy tables you are quoting are for the non BAV cohorts which are generally replacements due to unhealthy behavior, etc. they are also later in life. It’s all cause mortality they are quoting, so yea a 70 year old getting a new valve wont have great longer term stats. What worries you the most? Is it the possibility of surgery or are you concerned about reduction of life? Have you talked to a counselor? Sometimes these forums can also raise anxiety. If you find yourself reading too much on here, maybe try setting aside for a while and going on with life? Chances are - you and I are going to have completely different decision criteria when it’s our turn. Technology will have changed. Hopefully, tissue valves will have proven more durable with the TAVR valve in valve technology for round 2. Nobody looks forward to surgery, but try not to let the 15 years before surgery be worse than the surgery itself!! Another way to think about this - imagine you are talking to someone else who is going through what you are. What would you tell them? Isn’t it interesting how your perspective can be much clearer when you take emotion out of it? I Hope this helps you in some way. I feel what you feel, and I know we will both get through this.