Repair, Ross or Replacement?

[luckoftheirish]

Dear all,

Late last year i was diagnosed with severe AR and biscuspid - recommended for surgery within 6 months Although had aortic coractation repair aged 3, this was a surprise as completely asymptomatic (super healthy) and aged 29.

After all the usual battery of tests (TOE, Echo, MRI, Angio etc etc) was recommended to have valve replacement. As I do not want to be on anti-coagulants was being pushed towards bio-valve (maybe with root replacement). I accepted the fact of facing further surgery. However, following a number of second opinions the alternatives of valve repair or Ross procedure seem to offer better long term solutions - with possibilities to avoid future surgery. That being said, there is a serious lack of consensus between the cardiologists and surgeons on the optimal route here.

Although one surgeon is confident of a repair option and I have found it difficult to get details on long-term success of this procedure. It appears to somewhat of a developing area so would appreciate anyone views or input. In particular as to different techniques, leading surgeons and success data.

On the Ross Procedure it seems to be a love or loathe situation. Given my age, healthy pulmonary valve I am certainly a candidate for what appears a great long-term solution. Some opinions however do not believe the success of this procedure have been sufficient and others point to risks regarding connective tissue - which could be cause longer term failure. Again, any input would be very helpful on this.

Apologies for such a long-winded first effort, but I am getting fed up with so many conflicting opinions from top respected cardiologists and surgeons. I know there is no RIGHT answer but perhaps you guys can help be work out the best route forward?!!

Cheers,

John

 

[briansmom]

John,
You are at an age where this decision will be difficult. I just posted a note about a successful repair of a vr.com member's 17 year old son's bicuspid aortic valve. His surgery was at Cleveland Clinic and it appears to be on the cutting edge of things. IMHO a repair is ideal if you could be expected to get at least 10 years of active life out of it. Hopefully, within 10 years percutaneous valve replacement will be the norm, but that is an unknown at this time. I chose an On-X valve for my son because they are doing trials of that valve without anti-coagulation. Unfortunately, that trial will not be completed until 2015. Like you, I got that love/hate thing when I discussed a Ross for my son. My son was very sick by the time that we got to the valve question because he was not diagnosed in time so that limited our options. My son is on anticoagulants and it is really not the big deal that people make it out to be. Be sure to read the stickys on this site about valves and anti-coagulants.
You're right, there is not right (or wrong) answer. Whatever valve you choose will be the best one for you.
Continue to ask questions, you will get a lot of answers here.

 

[tobagotwo]

This isn't going to be very comforting, so if you need that now, save this for later, when you're feeling strong. I understand the draw of the Ross Procedure. The idea of moving ahead with a renewed valve of your own making is enticing.

However, you have had congenital problems with your aorta, and a bicuspid valve that has gone foul on you at the tender age of 29.

I am not a physician, but I would have to say that these are strong indicators that there can be other tissue problems present or developing over time, including myxomatous (weakening) tissue in other valves. These are related to the connective tissue problems you've been warned about.

Because of that, there's a fair chance that the pulmonary valve won't go the distance, if moved to the more demanding aortic position. Have they been able to determine if it, too, is bicuspid? That's not an unusual result. Fortunately, even if it's so, it will likely still continue to function fine in the pulmonary position throughout your lifetime.

However, if that valve failed in the new position, it would create more of a liability for you. From my observations on the site, I believe that the use of an even mildly questionable pulmonary valve is the single, most common and preventable cause for Ross Procedure failure.

I'm sure you've looked into it, but you realize also that a tissue valve won't last very long at your age. Ten years would be a real stretch, even with current anti-calcification treatments. You'd need to be sure you're ready to take that surgery plunge again before you hit 40. That's a decision only you can make for yourself.

The good news is that you're young, and will probably take your surgery well in stride.

I know that wasn't the most thrilling post to get in return for your question, but it's not at all intended to be as cold as it sounds. I do hope things go very well for you in this adventure we here all get to share.

Best wishes,

 

[surfsparky]

Hi John,

Welcome to the site! My husband has had the Ross and one of his close friends has had the Ross also. Both of them are happy with their choice and if they had their time over again, would make the same choice. They both now enjoy active sports such as running and surfing. (Incidentally, they both had BAV too. ) Chris did inititally have an immune respnse to the new donor valve (in the pulmonary position) but that has not increased any further over the past 3 years. I agree with you in that the Ross Procedure is not for everybody and everyone seems to have strong (and justifiable reasons) why they love or loathe it.
My two cents would be to make sure that if you do go ahead with the Ross that you use a surgeon who has extensive experience in this area as the operation is more technically difficult. Also, I would also have the aortic root replaced or reinforced at the time of the operation as studies are now showing that this can be a weakened area and increase in diameter over time. Check out the Bicuspid Foundation website for more information on that one.
Feel free to ask any questions, and all the best with your research. There is no one perfect solution...you just need to weigh up all the options and decide what's best for you.

All the very best,
Yolanda

 

[finnbee]

choices

choices

heya!
I'm 47, diagnosed with a bicuspid aortic valve (First showed up as a murmur at 20, then later we looked at it and figured out what was going on). No symptoms EVER as it got worse; finally the docs would look at me and say "you're SURE you feel OK?" Thankfully a good diet and lots of exercise spared me from symptoms and made my valve hang in there longer than most. I had to make the decision too about 'what kind to get'.
Dr. Sundt, who was awesome, at Minnesota's Mayo Clinic/ St Mary's hospital said, and I can practically quote him: "if you get a tissue valve, there's an 80 % chance I'll see you back here in 12-15 years. If you go for the mechanical, there's a 95% chance I will not see you back here at all." This particular surgeon saw no wisdom in subbing valves via Ross. I am happily ticking slightly and almost back to normal at a month and a half past surgery, and happy with my choice. Adam Pick, in his book "A Patient's Guide to Heart Valve Surgery", went for the Ross procedure. really check it out good, though, as you are so young and you're in it for the long haul!!
deb
http://heartgig.blogspot.com

 

[KathyM]

Thanks everyone. This is going to be a tough decision. I will also talk to the doctor next week. It is good to go in with information, so that when he does start to talk about it, I at least know what he is talking about.

Deb I was just on your blog I loved it. It was great to read your accounts of each day. Keep up the good work. I will be back

Thanks again everyone

xoxo
KathyM

 

[Ross]

John I know you said you don't want to take Anticoagulants, but have you studied up on the truths of the drugs and not the many many myths? All I'm saying is, if your doing your homework on valve selection or options, make Coumadin a part of the studying. Please see our sticky threads here and in anticoagulation and pay a visit to http://warfarinfo.com/warfarinfo.com2.htm

Include it in your education. I have a feeling you've heard a bunch of old myth garbage that simply isn't true.

 

[CHDDoug]

Tough decision

Tough decision

John,
Welcome to the site. I'm fairly new to the site as well. I just had the Ross procedure done on Tuesday (and am still in the hospital...but doing very well and heading home tomorrow). I'm 33 years of age and wanted to maintain an active lifestyle without worrying of the side effects of coumadin. I talked with my cardiologist about my options, but unfortunately, not all cardiologists are 'up to date' on the pros/cons of all procedures. I did alot of research on the internet while trying to make my decision. Ultimately, it came down to my comfort level and my gut instinct. I'm by no means a doctor and won't pretend to be one. I do agree that if you consider the Ross, you HAVE to seek out the best for that type of procedure!!! My local surgeon was willing to do it and had done about 75 Ross's in the past, but my comfort level wasn't where it needed to be. I sought out what I feel (and others feel) are the best Ross surgeons in the nation. I had it narrowed down to Dr. Stelzer in New York (has done the 3rd most procedures in history...behind Dr. Ross and Dr. Elkins from Oklahoma City - whom is now retired), and my other choice was Dr. William Ryan in Plano, TX. I sent both surgeons emails and both responded quickly. Both surgeons are wonderful and I felt comfortable going with either one! I ended up choosing Dr. Ryan in TX only because of proximity to where I live and also the ease of travel for my family (I have a two year old and a 6 week old). Dr. Ryan is wonderful and I HIGHLY recommend him. The new Heart Hospital in Plano, TX is awesome as well! It's only 1 year old and everything is state of the art. Everyone here is so nice and more than competent. All this being said, I think you have to seek out information from surgeons that know what they are talking about...not ones that are trying to keep the business local. I'm not sure you can make a 'wrong' decision, but I think you can make a decision that is best for you and for your lifestyle. If I had to do it over a million times, I would do the Ross again. That is just my personal conviction, so take it with a grain of salt. I just wanted to give you a perspective from someone that has just gone through the Ross. I wish you nothing but the best in your research and hope that you come to a decision that you are comfortable with. If you have any questions at all or would like to call me, please feel free to send me a private message and I'll give you my phone number. I'll be happy to help in any way that I can.

Take care and stay in touch!
Doug

 

[Ross]

I love my Ross (procedure that is) but there is some bias on this forum as the folks running it the site take blood thinners. Intentional or not it's like the ford chevy debates.

Not anymore. It's been peaceful and I intend for it to stay that way. We will however, correct anyone posting incorrect information regarding Coumadin and it's use. People who don't take it shouldn't be giving information on it. Refer them to people who do or to the Anticoagulation forum.