Bicuspid Aortic Valve Replacement/Repair

[RossGurlie]

Not sure...

Not sure...

Hey! I'm not sure if you've had your surgery yet, but I just wanted to throw in my two cents. I had my OHS two years ago when I was 13. I also had a bicuspid aortic valve that had become so stenotic that the velocity across my valve was classified as 'severe'. My surgeon mainly talked to my parents, so I'm not quite sure what he said. I do know that he went into surgery wanting to repair my valve. Well, he did. That took about three or four hours. He then 'warmed me back up' and took me off bypass to see how the valve was working. Unfortunately, he was not satisfied with the result. I was going back under. He then performed the Ross Procedure, which made for a total of 11 and a half hours in the operating room! The Ross Procedure, though very complicated, has shown great outcomes! I have been doing great since surgery, with little restrictions on exercise (I'm an asthmatic, so that comes into play). Both the autograft and allograft have been showing very slight problems, so I'm going back in November to check on those. Otherwise, I am doing wonderfully! If your surgeon will be able to repair your valve, I say go for it! If he is unsatisfied, the Ross Procedure is great! :] Hope this helps.

Cailey

 

[RossGurlie]

Oops...

Oops...

It looks like you have had your surgery afterall. Did your valve get repaired or replaced?

Cailey

 

[sknydave]

Hi, I did indeed have my surgery. I'm home now and feeling like a million bucks.

I had the valve repaired. See my updated post in the pre-surgery section of the forum.

Thanks!

 

[chilihead]

Ross Procedire Info

Ross Procedire Info

In the Central Texas area, Dr. Chip Oswalt, is probably the best guy to see about a Ross. Dr. Oswalt, president of Cardiothoracic and Vascular Surgeons and a partner in Heart Hospital of Austin, is the lead surgeon on this procedure and is well respected for his work.

http://www.ctvstexas.com/a_medcath_spring2002.html

Best of Luck,

Jim

 

[donnamarie]

I had done some research on this procedure because:

1. I don't want to take coumadin
2. I wanted to stay as "human as possible" (I know, it's silly)
3. I don't want to take coumadin
4. Did I mention, I don't want to take coumadin

...

AJ - that gave me a chuckle! Good luck to you on the 31st. I'll have my 2nd opinion that day.

 

[Susan BAV]

Gdfd -

Gdfd -

Hi sknydave,

Warning: I’m not a healthcare professional and my opinions could be incorrect. Please do your own research to confirm or infirm them.

I'm in the same situation as you. I searched the Internet for the possible ways to fix the problem and I found the following:

1. BAV repair. Offered usually for people with aortic regurgitation and none to mild aortic stenosis. More information could be found here: http://www.clevelandclinic.org/heartcenter/pub/guide/disease/valve/youngvalve.htm
2. Ross procedure. It seems that in the case of a person with aortic aneurysm (AA) this would be a fix for only a short time. The following article http://circ.ahajournals.org/cgi/content/full/106/8/900 states that persons that have AA have also the aortic smooth muscle cells compromised. This is the same for the smooth muscle cells of their pulmonary artery but, I guess that because the blood flow pressure in the pulmonary artery is not so high, it is to a lesser extent than for the aortic one. So I think that in our case is just a matter of time until the same dilatation of the “repaired aorta” will occur. However, for people with BAV that are old enough to hope that an AA will never occur to them, this seems to be the perfect choice. I would be happy if someone could confirm or deny this.
3. Homograft. I have very few information regarding its lifespan. You could look here: http://www.future-drugs.com/doi/pdf/10.1586/14779072.2.1.97
It seems that for young people the homograft is a better choice that a stented bioprosthesis (see Figure 1.).
4. Bioprosthetic valves. Often I found that their lifespan is limited for young people (less than 60 y.o.). However it seems that in 2002 the percentage of bioprosthetic valves used at The Cleveland Clinic Foundation shifted from a ten year average of 13% to an incredibly high 74% while the percentage of mechanic valves decreased dramatically from a ten year average of 77% to an incredibly low 9% (all those numbers are for people less than 60 y.o.). You will find this information on the page whose link is given at point 1 and I would be happy if someone could confirm it somehow.
My guess is that this astounding shift happened not because the lifespan of bioprosthetic valves improved suddenly but, more probably, because the healthcare professionals (or maybe their patients) started to give more weight to their “life quality” criterion when choosing their valve prosthesis. If you are aware of another event that could have lead to this major shift please let me know.
On the other hand, you should take into consideration that a big percent of the people that opted for a bioprosthetic valve will start to take Coumadin® after their valve replacement surgery. However this is predicable for a minority of them even before the surgery, and for this reason the membership to this minority should be checked before making your valve choice. This minority includes persons with genetic mutations as factor V Leiden syndrome and/or activated protein C resistance.
5. Mechanic valve. I didn’t find yet enough information to be able to compare the best contenders that seem to be the On-X and the St. Jude Regent valves.

I would highly appreciate to have your feedback regarding my findings.

Welcome to the site; glad you found it. Feedback? I didn't cross-reference but I found your post very interesting.

What is your diagnosis? Are you scheduled for surgery yet? What decisions have you come to?

(Edit - Thank you for the PM; hope all goes very well for you!)

 

[sknydave]

Welp.. Looks like I'll be getting a new valve put in. My repaired aortic valve is leaking again and I'm already scheduled for the end of April. It's depressing to say the least, but it was a chance I was willing to take. If I would have had a tissue valve put in I would have needed it replaced a few years. I still believe in repairs and I'm sure they're only going to get better, but I'm starting to think mechanical valves will be clear for operation with low doses of warfarin by the time they perfect repairs.

So now it's back to the drawing board. It's really hard to give up the sports and activities I love. Do I go tissue or go with the on-x and hope the clinical trial is a success..

*sigh*

 

[WayneGM]

Sorry to hear your repair didn't hold and you have to go through OHS again. I'm sure it is very disappointing and discouraging but it sounds like you've got a good attitude about it. Best wishes with the replacement surgery.

 

[thenewmarket]

I can only imagine your sadness and frustration because of this new revelation. I have followed your posts as my husband had BAV repair in September 2007. Our prayer has been that his repair will last his lifetime but we do understand the realities for OHS. There are no guarantees for any of us! Did you have symptoms or was this discovered during a routine echo?

Please stay strong and remain focused on the blessing that you have another option!

 

[Susan BAV]

I'm sorry to read this, Dave.
Best wishes to you as you make your decision and I hope all goes well for you and that you'll feel great soon .

 

[sknydave]

Thanks for the kind words, everyone!

thenewmarket, this was brought to light during my 6 month follow-up echo. I feel better than I did prior to the surgery (it is leaking much less than it was prior to the repair.) I was waiting on the results of this echo before I returned to high level exercise. Guess I'll have to wait a few more months!

 

[Karlynn]

You have to feel pretty frustrated. You go into a surgery hoping for the best, somewhat prepared that things might not work out as planned, yet still get disappointed when your best hopes don't pan out.

What sports and activities do you think you will not be able to do if you have to take Coumadin? There are a lot of misconceptions about what you can and can't do while on Coumadin. Maybe some of the things you do really shouldn't be done on Coumadin. But there are a lot of things that people can do. Head injury is the primary concern. But many times we just recommend people use the appropriate safety equipment and go live life.

Tell us what you think you may have to give up and we can have a discussion. In the meantime - if you haven't, be sure to read the Stickies at the top of the Anticoagulation forum.

Best wishes!

 

[Isis]

So now it's back to the drawing board. It's really hard to give up the sports and activities I love. Do I go tissue or go with the on-x and hope the clinical trial is a success..

*sigh*

Sorry to hear your repair did not last as long as hoped for. I got the on-x last year at Florida Hospital in Orlando. Everything is going well so far. I take warfarin now and have not had any problems. I was back to cycling about 3 months post op.

 

[sknydave]

I had been submission wrestling and boxing for several years and stopped when I learned I had the aneurysm. It's not the end of the world, I'll just have to take up something else like cycling or running as several other members on this forum still do.

Thanks for the replies!

 

[netmiff]

David, sorry to make your acquaintance just because you need more OHS, you must be pretty bummed out. Still, you do seem to hae a positive attitude, and that should carry you through a lot of ups and downs. Take care and best wishes for a full recovery this time.

 

[TinaK]

True BAV girl

True BAV girl

Dave,
Interesting that this doctor thinks repair is new! My aortic valve was repaired in 1980 when I was 13 years old. Although the hospital thought a replacement was in order, my mother in her infinite wisdom would not allow it. It was the best decision that could have been made. After my surgery I was able to have a fairly normal teenage life, grow up get married and have two babies. I dont think I would have accomplished all thathad they replaced my valve. I recently had a mechanical valve and root replacement done in February 2008. That too was the best decision I ever made.
What I have found is every persons situation is unique, and the best decision we can make is an informed decision. Get a second and even a third opinion. Find a surgeon who works with a team of surgeons, this way you are getting several surgeon eyes on your medical records.

As for the coumadin, its not really that bad. Think of it as taking a vitamin for the rest of your life, its better than not having a life at all to live!

 

[witzkeyman]

Welp.. Looks like I'll be getting a new valve put in. My repaired aortic valve is leaking again and I'm already scheduled for the end of April. It's depressing to say the least, but it was a chance I was willing to take. If I would have had a tissue valve put in I would have needed it replaced a few years. I still believe in repairs and I'm sure they're only going to get better, but I'm starting to think mechanical valves will be clear for operation with low doses of warfarin by the time they perfect repairs.

So now it's back to the drawing board. It's really hard to give up the sports and activities I love. Do I go tissue or go with the on-x and hope the clinical trial is a success..

*sigh*

25 years old, close to my age, I'm 43. I asked for a tissue valve from my surgeons and they pretty much told me that I'm too young. I told them that my body doesn't tolerate medicines well. I'm currently having diarrhea, although I'm not sure it's from the Coumadin (may be the Lopressor). If I had my chance again, I'd probably go with my doctors' choice because they know best (even with all of these messed up complications). Coumadin is no day in the park and changes your life. I think it's a matter of finance meaning can you afford to take off another 6 weeks 10, 20, 30, and 40 years down the road, and do you want to have 4 more surgeries a(maybe 2 or 3, but who knows)
Peace !

 

[JohnnyV_46]

I dunno age has all that much to do with it. I had my BAV and AA repaired replaced in 05'. Coming up on my 3rd anniversary later this year. I'd rather face another surgery and live my life everyday with only a scar to remind me I ever had surgery. This has been a long discussion. My Cow valve is treating me great. The surgeries and Valves are only getting better....Go for the Cow... IMHO...

JohnnyV

 

[Karlynn]

I think in this case that age does have something to do with it. Sknydave is 25 and has had one OHS. Going with a tissue valve will get him another surgery in less than 10 years most likely. So between 30 and 35 he will be approaching his 3rd OHS. Of course it's not guaranteed that choosing a mechanical valve will mean no more OHS, but it has a much higher probability. But 3 surgeries in approximately 12 years or less, is a lot of surgery. His 25 year-old body will wear out a tissue valve much faster than a 45 year-old body.

One thing that I do believe he needs to know is why his repair failed so quickly and does that factor have any impact on the type of valve he should choose?

 

[CHDDoug]

Ross...

Ross...

Dave,
I'm 33 years old and just had AVR (4 weeks post op). I chose to go with the Ross procedure so that I could maintain my active lifestyle and not have to take warfarin for the rest of my life. I consulted 3 top-notch surgeons about my case (only had the bicuspid aortic valve...nothing else). None were too excited about the tissue valve for obvious reasons....I'd be back in about 8-10 years for another replacement. None were really excited about mechanical either. At my age, being on warfarin for 50 years may not be a great thing either (plus activity limitations, etc). All 3 thought that I was a great candidate for the Ross (where they take your pulmonary valve and place it in the aortic position, and then place 'another' valve in your pulmonary position). It's a somewhat 'controversial' operation because it's only been around for 30-40 years and not alot of surgeons do them. The surgeons that specialize in the Ross have had alot of success with it. Theoretically, I should be able to get 20-25 years (or even longer) out of my Ross before anything else has to be done. There are alot of factors that affect that number, but just generally speaking. I was also told by Dr. Stelzer (has done the most Ross' of any active surgeon) that I was just as likely to have complications with a mechanical valve and warfarin as I would if I went with the Ross (study that was done). Hmmm...just something to think about.

I'm not telling you to get the Ross done...but just something to think about. It's an alternative to mechanical and tissue valves.

I sought out Dr. Stelzer in New York, as well as Dr. Ryan in Dallas, TX. Both are considered Ross experts. I contacted both of them and both called me back within a day. Both are willing to talk to you at length about the Ross, and both took a look at my records (echos, MRI's, etc) at no charge. I ended up choosing Dr. Ryan in Dallas and absolutely loved him! Wonderful, wonderful man!! The new Heart Hospital in Plano is amazing as well.

If you'd like to talk to me about the Ross, please feel free to pm me.

I wish you the best!