Bicuspid Aortic Valve Repair?

[smokey]

Hello everyone. This is my first post here to the forum. What a great place to find as I navigate through the reams of information regarding valve disease!

I am searching for a surgeon to consult regarding repair of a bicuspid aortic valve rather than replacement. From what I have read so far, I might be a candidate -- in any case I want to explore the option before we take the plunge.

I am 42, fairly athletic/active, suffer from no other maladies, and live in rural west Texas about 80 miles west of Odessa.

I was diagnosed in April with a bicuspid aortic valve and moderate to severe regurgitation After three opinions it appears that this will need to be fixed in the relatively near future.

I have read about repair procedures, Cleveland Clinic has such posted on its website, but am not having any luck finding a surgeon to talk with. The surgeon I was referred to by St. Luke's (Texas Heart Institute) had not heard of repairing such a valve.

I have limited my search to Texas up until now but am writing Cleveland today after I post this.

Any advice, either to contact a specific surgeon, or a better way to go about finding one, is appreciated.

Thanks in advance,

Smokey Briggs

 

[WayneGM]

Unfortunately, I can't help you with your question....but welcome to the VR community. Glad you found us. I'm sure somebody with similar experience to your situation will come by shortly with some insights and information. Best wishes and good luck.

 

[tprice54]

Welcome

Welcome

Welcome aboard. I am sure others will be along to help you regarding repair. I was not a candidate and had a replacement. Any questions, ask away...the only advice so far I can give is have a backup plan even if you go in for a repair...anything can happen in surgery.

 

[ShezaGirlie]

Real people, real repairs..

Real people, real repairs..

Bienvenidos Smokey..

Have a read of this thread: http://valvereplacement.com/forums/showthread.php?t=21575&highlight=aortic+valve+repair

 

[Ross]

Check with the Cleveland Clinic on this one. Honestly, your probably better off just replacing the valve. If it can be repaired, repairs usually don't last long and then you'd be looking at surgery #2. That's not the desired way to do things.

 

[Marguerite53]

Welcome to our wonderful community!!

Once you find a surgeon who is willing to discuss repair, be sure to get him to weigh in on valve type as well. Oftentimes, a surgeon gets in there and finds he can't repair it after all, so it is best to be ready with a valve choice. On the other hand, I recently spoke with a 79 year old woman who had severe endocarditis (not your problem at all...rather an infection that can attack perfect and defective valves alike) to 2 valves and the surgeon prepared her for replacement and, once inside, was able to do a repair. They really know so much more once they are inside.

Good luck and keep us posted.

Marguerite

 

[PJmomrunner]

Hi Smokey:

Welcome. If I were looking for a top-notch surgeon in Texas, the first name that would come to mind is William Ryan, MD in Dallas. Several of his patients are on VR.com. I believe he does a large number of Ross Procedures and when I googled his name and bicuspid aortic valve repair I got a hit for a symposium he co-directed last year that addressed the subject. The faculty, I might add, were an esteemed bunch as well.

http://www.crsti.org/valvesympagenda2006.html

 

[Blnmakerr]

Suggest you contact Dr. Lars Swensson at The Cleveland Clinic. He repaired TheNewMarkets bicuspid aortic valve last week and replaced mine with a tissue valve...No complaints so far...

Blnmakerr

 

[thenewmarket]

Hello to blnmakerr my Cleveland Clinic friend! (Please post about your wife's surgery). My husband just had bicuspid aortic valve repair at Cleveland Clinic and it was minimally invasive. We truly were NOT expecting a repair but once the surgeon got in there he WAS able to repair instead of replace. I will not take it upon myself to be the expert on the statistics for Cleveland Clinic but they are very successful with bicuspid aortic valve repair. Please let someone at CCF tell you their statistics, I think you will be astounded. I think the most important aspect of repair is the skill of the surgeon. As a general rule, the repair data doesn't look very positive because the surgeon skill isn't positive. FIND A SKILLED SURGEON.

If you would like to send me a private message I will share all of our story with you. My husband is still in the hospital but when I can I will share our experience with you.

 

[Dustin]

Admittedly, having your AV repaired sounds fantastic, but I think this sort of procedure is rare and may not yield optimal results. As others have noted, find yourself a darn skilled surgeon who knows what he's doing. He ought to be candid with you about possible failure and reoperation. Getting informed is important.

 

[Dustin]

From what I read, repair presents minimal risks, however a
majority of patients will not qualify for this option.

Oops, I now see that we are talking about regurgitation, not stenosis, which is of course a total different game.

 

[sknydave]

The only problem is that it is only recently being performed on a larger scale (for the most part.) You won't really be able to have any significant data until you hear from folks like myself several years down the road

 

[Randy & Robyn]

I also suffered from severe aortic regurgitation. In the fall of 2005, I went to Mayo, one of the best heart hospitals in the country and had aortic valve repair surgery performed by Dr. Kenton Zehr, one of the top valve surgeons in the US. Two weeks later, the repair failed and I was facing another surgery.

Dr. Zehr was extremely confident he could deliver excellent results and that I would never need another surgery. It didn't happen.

I don't want to steer you away from the chance for a repair but be very wary. They work much better for mitral valves or when an aneurysm is the cause of the aortic regurgitation.

Believe me, it was not fun to start planning for another surgery when I was still feeling like crap from the first one.

 

[sknydave]

There are plenty of people who had the same thing happen to them with valve replacement surgery. It's heart surgery - crap happens sometimes.

 

[Arlyss]

Complexities Introduced by BAVD

Complexities Introduced by BAVD

Bicuspid aortic valves are visibile markers of a condition that varies a great deal from one individual to another. It complicates things both for those who have BAVD and those who are their surgeons. Decisions made with the best intentions may or may not work as desired.

The idea of someone choosing or at least having input into repair or replacement (and which prosthetic valve they want) of their BAV adds another entire dimension to elective surgery. These discussions/choices depend on someone's ability to seek out and choose surgeons and hospitals that have significant experience with these options. Ultimately, one's trust is placed in the surgeon they choose, who will make the decisions and carry them out during surgery. (We have evolved from almost no knowledge or ability to research with that first experience in 1990, to extensive involvement in every decision about my husband today.)

The following paper gives examples of 3 BAV individuals and the different outcomes that occured. The references cited by this paper include work done at Cleveland, Mayo, and Toronto among others. It includes discussion of treatment of the ascending aorta in those with BAV and how that factors into decision making.

http://www.revespcardiol.org/cgi-bi...oeng.mrevista_cardio.fulltext?pident=13099937

With BAVD, where there is still a great deal of challenge associated with the aorta and the progressive nature of aortic disease, we are still pioneering generally. Some people live their lives relatively unaffected, some have one surgery, some have multiple surgeries. Some are injured or die without warning when the aorta tears or ruptures. There is a great deal of variation within family members. There are some clues, but much is still not known about BAVD. No one can predict what it may mean in the future in my husband's body - we can only be on guard as much as possible.

I am very sympathetic to anyone hoping to save their own valve. There are some hard decisions to make. There are also hard decisions regarding valve replacement. The root and ascending aorta have to be included in the thinking. With what is known today, those decisions will be made. Time will test them. It is the challenge of BAVD.

Best wishes,
Arlyss

 

[Susan BAV]

Very interesting article.

 

[sknydave]

what is your definition of "caught on?"

Myself and other members on this forum have had repairs.

 

[MikeHeim]

Arlyss-
Fantastic article. Thanks for sharing it. However, I don't understand the following statement:

"In a recently published study, at 1-, 5-, and 8-year follow-up, AR recurrence and need for reoperation were 3.2%, 11%, and 18%; and 5.3%, 29%, and 56%, respectively."

If the 1-, 5-, and 8- AR recurrences are 3.2%, 11%, and 18%, why are the reoperation rates 5.3%, 29%, and 56%? Are these numbers in the wrong order? Why would someone have a reoperation if there was no AR?

 

[tcopel]

Just wanted to throw my 2 cents worth in there as I have had the David procedure, an aortic valve repair. The difference between us is that I had a tricuspid valve, stretched be a 6 cm anuersym. We are similiar, however, by the stress and strain of trying to make good and informed decisions. I spent countless hours studying the options and a few sleepless nights of not knowing if what I chose was the right thing to do or not. So far, so good.
This is to simply say, keep the good fight and we all here on VR support you and understand what you are going through.

 

[Bad Mad]

Any of the UK posters who are remotely interested in Soccer will be familiar with the ex-Arsenal (now Portsmouth) Nigerian soccer player Kanu who underwent an aortic vlave repair in 1996. Incidently, he is still playing profeesional soccer at the highest level in England.

"Kanu had a serious weakness in his aortic heart valve: so serious that his life was threatened. He could not safely be allowed back onto the pitch. Inter tried and failed to get their transfer fee back from Ajax. The Italian press read the last rites over his career. He underwent open-heart surgery in November 1996, at the Cleveland Medical Center in the United States. Rather than replacing the faulty heart valve with an artificial one, the surgeons carried out a delicate repair that they hoped would allow him to play again. He woke up from the operation to learn that he had been voted the African Footballer of the Year. Cleared by doctors to return to active football in April 1997, but he was not able to get back to the field during the season."