Repairing BAVs

Valve Replacement Forums

Help Support Valve Replacement Forums:

This site may earn a commission from merchant affiliate links, including eBay, Amazon, and others.

Arlyss

Well-known member
Joined
Nov 7, 2002
Messages
447
Location
southern California
I wanted to comment about repairing BAVs that have stenosis. My husband had stenosis - the stiffened, horribly calcified BAV that adults often develop. I was told by the anesthesiologist that he had never seen a valve with as much calcification - he said it was like cauliflower all over! The surgeon was extremely worried that some granules of that calcified mess had escaped and might have caused a stroke. That did not happen, but calcification can be very nasty stuff. I later learned that my husband's valve opening was only .5 at the time of his surgery, which is considered critical. Interestingly, he did not have gradual symptoms, but when he did get sick, he was extremely sick. A valve like his does not lend itself to repair.

Scrolling down on the BAF home page, there are some short video clips, and in the one about BAVD, there are some images of calcified BAVs, giving an idea of what they are like. Here is a link www.bicuspidfoundation.com

Sometimes we hear about children/teenagers having a repair of a BAV with stenosis. This is different. These BAVs are still flexible, but the tissue itself is so fused together that the valve cannot open very wide. They apparently are born this way and generally do not get very old before something must be done. Surgeons may just clip the tissue so that the valve can open more widely, allowing the child to keep their own valve as long as possible.

The other cases where repair of a BAV is discussed involve those with regurgitation.

I should mention that the other video clips on the page above are short, but they give a glimpse of the usefulness of 64 slice CT and MRI/MRA in BAV and thoracic aortic disease.

Best wishes,
Arlyss
 
Thanks for your post Arlyss.
I always keep a look out for your posts, especially as my husband had BAV.
He now has a mildly dilated aortic root (3.9) and ascending aorta (4.0). Actually they were mildly dilated at time of surgery (3.7) but we were never informed of this and if we knew then what we know now (especially after reading all of your informative posts, and the info on the Bicuspid foundation website) we probably wold have asked for these to be repaired/replaced as well at the time of surgery.
Anyway, sorry to ramble...just wanted to let you know that we really appreciate your knowledge and insight in the areas of BAV...thank you for your time and input on this great site.

Hugs, Yolanda
 
Bicuspidboy has provided a very helpful list of references regarding this subject. Thank you!

The paper from the U of Toronto on the nature of BAV disease is a ground breaking paper that has done a great deal to bring attention to the nature of BAVD generally.

In one of the papers it mentions a treatment variation I did not initially mention - going in with a balloon and stretching the valve tissue in children with stenosis, rather than actually clipping open the tissue. These approaches are aimed at keeping the child's own valve as long as possible.

On the BAF website, in the video by Dianna Rose, she describes having her valve clipped open as a child. It lasted her much longer than anyone would have expected.


Best wishes,
Arlyss
 
I have a question that fits in here.....
I have often wondered why some BAV patients are so hooked on the "repair" option...arent they just prolonging the "replacement" option ?...messing around with damaged and faulty tissue just doesnt seem worthwhile to me or do they remove this faulty tissue ? and then wouldnt it need replacing anyway...
 
I have a question that fits in here.....
I have often wondered why some BAV patients are so hooked on the "repair" option...arent they just prolonging the "replacement" option ?...messing around with damaged and faulty tissue just doesnt seem worthwhile to me or do they remove this faulty tissue ? and then wouldnt it need replacing anyway...

The repair is something that interests me just for that reason of prolonging the replacement. I am young and have an active lifestyle as well as a job that will probably not allow me to be on an anticoagulant. If I can get as much time out of a repair as I could a porcine valve I think it is worth it to preserve my career and lifestyle. I will be looking at round 2 for the mechanical valve (or maybe a better option by then). I'm sure the risk is always there when dealing with damaged tissue. I guess you just have to trust the surgeon to make a good decision (and have a backup plan pre cut).

Eric
Moderate-severe aortic regurgitation
Sitting in the waiting room
 
Interesting topic, as I had a repair done when I was 12, they told me I was too young to have it replaced. Then I had it replaced when I was 24.
Guess it depends on your lifestyle, and what stage in your life you are at in making the right decision whether to repair or replace, however I would be more agreeable that adults should have it replaced to prevent further surgeries.
 
Thank you bicuspidboy for always being so positive and uplifting about BAV repairs. I don't know if you saw my earlier post, but my husband is one out of the 130 AV repairs done at Cleveland Clinic. It is very humbling to be 1 of 130 when you consider the thousands of procedures they do each year. It is a lonely statistic because there aren't many others who can relate! We fully intend to be that lone statistic with this repair lasting a lifetime. Wouldn't that be a blessing........however, we will handle whatever comes our way in a positive manner.

Thank you for all the informative studies you share and for cheering us on! I appreciate your knowledge and your attitude.
 
I have a question that fits in here.....
I have often wondered why some BAV patients are so hooked on the "repair" option...arent they just prolonging the "replacement" option ?...messing around with damaged and faulty tissue just doesnt seem worthwhile to me or do they remove this faulty tissue ? and then wouldnt it need replacing anyway...

I guess there is no 'one' answer for our condition, it's nice to have an open mind for all options and i guess we all have our 'pecking order' of things we consider important.

However, i'm with Toni in my decision process, i had an aneurysm, a bav with stenosis and regurgitation, an enlarged root and an enlarged ventricle.....things were on the verge of going downhill and so for me the option of 'tinkering' didn't seem appropriate for a father of two...get in/fix/get out/don't go back....

As with everything here, the reason for us posting is to ensure everyone goes into their surgery comfortable with their decision and INFORMED about the choice they have made. No-one should expect a repair to last a lifetime (even though they can sometimes) just as no-one should expect a mechanical to never need to be replaced.

Plan B....always have a plan B. :)

Great info though.
 

Latest posts

Back
Top