Question about BAV Repair

[cbdheartman]

Everyone here seems to believe that a repair necessarily means another surgery down the road. One surgeon I said thought that a repair could mean an upwards of 50% chance of not having to do anything to the valve again. And at CC the 10-year reoperation rate is < 10. Do we really know? I think I am willing to take the chance on repair because from what I've been gathering valve replacement in 15+ years may be much less invasive. My thought is I may really only have one full-blown OHS surgery in front of me either with a tissue valve or a repair. There obviously is no way of knowing, but I'd welcome thoughts, push back, etc.

 

[Ross]

I've seen repairs last only hours and I've seen repairs last years, but I've never seen one last a lifetime.

Do not place your faith in what may be in the future as far as how surgery is done. You have to think today and whats available now. Sure, there is lots of talk about minimally invasive techniques, but there has always been a lot of talk and little do. My advice, with BAV is get a new valve and get the aorta graft or your almost guaranteed another surgery down the road. A tissue valve will guarantee you another surgery for sure. Mechanical would lessen that chance a 100 fold.

My question is, how old are you? You may have said, but I don't recall.

This surgery is going to really take the wind out of your sails. This is the worst thing to go through next to brain surgery. You DO NOT want to do this again if it can be helped. Some here disagree with that, but after what I've been through, there is no way in hell I'd recommend to anyone to set themselves up for another surgery knowingly.

 

[cbdheartman]

I am 31 so with a tissue or valve repair I could be looking at multiple surgeries of a long lifetime.

 

[Ross]

31 is too young for tissue in my opinion. It's your life, so it's your choice, but you'd be looking at 2 or more surgeries during your life and each one takes a another chunk out of you each time. This is only my opinion. I'm just trying to keep you from more time on the table, financial burdens, family worries, and everything else that comes into play with this situation.

 

[fabyan64]

I agree with Ross. At 12 the surgeons 'opened' my AR, knowing that when I was older I would need a replacement valve. At 24 they gave me a mechanical valve, which began to leak within a year or 2, but luckily, lasted until this past March when an anuerysm formed. However, the doctor decided the valve was just fine, and repaired the leak - had to do with the suturing and not the valve, and put in the graft to eliminate the anuerysm. I could have asked for a biological valve at my age (44), but I don't want to have surgery again. As Ross said, it does take the wind out of your sails like turning off a light switch. It's immediate! IMHO, I'd go for a mechanical valve.

Roderick

 

[MissMelis]

I had a BAV repair at age 6, and it lasted me 20 years. But, like they say, no one really knows...from what I gather, I'm lucky it lasted me as long as it has.

When I had my replacement, I chose tissue valve despite the fact that I am young because anticoagulants and pregnancy do not mix, and I haven't had kids yet. I knew that this would almost certainly mean another surgery down the road, but I was hoping not for a really long time until this aneurysm showed up.

Ross and fabyan64 are right IMO, mechanical sounds like it would be best option if you hope never to have surgery again. At your age, a tissue valve would almost guarantee you another OHS in your lifetime.

I feel for you, CBD. I can feel the stress and worry coming through the screen, almost!
You'll get through this. YOu are young and fit, and no matter what that is definitely going to serve you well in recovery.

Melissa

 

[cbdheartman]

I had a BAV repair at age 6, and it lasted me 20 years. But, like they say, no one really knows...from what I gather, I'm lucky it lasted me as long as it has.

I feel for you, CBD. I can feel the stress and worry coming through the screen, almost!
You'll get through this. YOu are young and fit, and no matter what that is definitely going to serve you well in recovery.

Melissa

Melissa! Thanks for your concern. Have you gotten your results from your scan back yet?

20 years?! That's awesome. I am leaning towards taking my chances with the repair because I'd like to try to avoid blood thinners. Here's how I figure it: What if the repair last's me 10-20 years or longer? That means I will have gone 20 years without blood thinners and at age 51 -- if I've maintained my health -- there really might be -- my guess there likely will be -- some new, less invasive surgery that will spare me the full OHS.

 

[MissMelis]

No results yet, I will know everything next Thursday, the 11th. On pins and needles until then.

Yep, from age 6 to age 26 the repaired AV lasted me, and I was really very active up until the replacement, when I took a pretty sudden turn for the worse. So if you have a good surgeon with a good reputation for repairs, you never know - it could last you a long time. That's the thing though - you never know. So being optimistic is good, but just bear in mind that it might not last you that long.
I can definitely understand you wanting to avoid blood thinners - same here - I sure don't envy the folks on here who have to deal with them.
I am glad you are getting yourself so well informed. I wish I had been when I had my OHS in 2005...you can bet I will be this time around.

Melissa

 

[fabyan64]

Blood thinners are not bad; though it sometimes takes a while to correctly stabilize the INR level. I was on Marcoumar (will go back to it as soon as I can find it) from 1991 until 2009, and now on Coumadin. Coumadin is iffy; and it depends on if you are taking a generic or not. Anyway, I think there is just too much hype and a lack of understanding about how the anti-coagulation works. I'm not going into the subject now, but as long as you watch what you eat (don't sit down and eat 10 tomatos, 20 apricots, 2lbs. of spinach, etc.) you should be fine. Shaving with a normal razor is no big deal, and yes, you might bruise a little easier than normal. On a lighter side, one advantage is that you can no longer take syringes directly into the muscle.

Yes, there will be a time when non-invasive surgery is part of the palette offered by surgeons; but it won't be perfected for many years. No matter what, there will always be a risk. Ross and others are only giving their opinions; based on what they know, have heard, and have experienced.

Regards,
Roderick

 

[ALCapshaw2]

Roderick -

What is the Basis for your statement "one advantage is that you can no longer take syringes directly into the muscle? Can you provide a Medical Source?

FWIW, I've been getting IntraMuscular Flu Shots EVERY YEAR with NO problems.

I also disagree with your statement about there being a difference in behavior between Name Brand Coumadin (which has had SEVERAL different manufacturers as the rights were sold from company to company to company) and Generic Warfarin.

FYI, at least one of the Coumandin manufacturers proclaimed that their product had 'tighter tolerances' than the generics. They LOST a Large Law Suit which showed that the Generic Warfarin manufactured by BARR (USA) actually showed LESS variation that the name brand Coumadin.

FWIW, I have used Coumadin, Warfarin from BARR (USA) and TARO (Israel) and saw NO DIFFERENCE.

Day to day living with Coumadin / Warfarin is NO BIG DEAL when PROPERLY Managed. Unfortunately there is a Wide Disparity it the knowledge and quality of anticoagulation management, especially from individual providers (i.e. single practice Doctors / Nurses). Home Testing and Dosing results in the Lowest Rate of "out of range" days when patients are properly trained. As Ross says, "It's NOT Rocket Science".

Going OFF anticoagulation for Invasive Procedures and then back on does require careful attention to weighing the Bleeding Risk vs. Clotting (and Stroke) Risk.

'AL Capshaw'

 

[Ross]

Blood thinners

Blasphemy! Go stand in the corner. It's Anticoagulant.