Ross Procedure

[vtwhip]

Okay, my husband and I saw the surgeon today and his options are a mechanical valve or the Ross procedure. My husband is 47 and not psyched about the idea of coumadin for the rest of his life. Has anyone out there had any experience with the Ross procedure?

 

[Mary]

Okay, my husband and I saw the surgeon today and his options are a mechanical valve or the Ross procedure. My husband is 47 and not psyched about the idea of coumadin for the rest of his life. Has anyone out there had any experience with the Ross procedure?

Hi, and welcome!

I'm going to suggest that you look up at the top of this page, at the search feature, and type in Ross Procedure. There are many threads that deal with the procedure--including a video of one.
You need to have a surgeon who has done many Ross operations. You don't mention the surgeon you are seeing, but you should ask him how many he has performed.
I bet you will have more questions after you read some of the threads, so please ask away with anything you want to know.

 

[vtwhip]

The surgeon is Dr. Schmoker at FAHC which is a teaching hospital. He has several articles out. Our question is, what are the limitations of having the pulmonic valve replacing the aortic valve? How many other people have had this done and what are their experiences? We need to make a decision soon because his aorta is extended due to the valve issue and surgery is better sooner than later.

 

[ctyguy]

Hello and welcome ! You have found a great resource with many posts that you can search on for just about every heart related procedure you can think of. There is alot of experience that you can learn from.

Im 43 and my surgeon recommended a mechanical valve and that is what I went with. I asked him about the Ross Procedure and the bottom line answer he gave me was that he didn't feel the risk of going from a one valve patient to a two valve patient was worth the risk. I know there are folks on here who have had the Ross procedure and are thrilled with the results. I've also read others who have had issues after 8 or 10 years. Im absolutely no expert so I will leave the specifics of the Ross to those who have been through it. The one common theme that I have read on the Ross procedure is that you want a surgeon who has ALOT of experience because the Ross is more complex that a single AVR.

In regards to the Coumadin, I think you will find alot of folks on here who will tell you that its not really a big deal and at 5 months post-op Im inclined to agree with them. Its taken me a few months for my dosage to stablize but its just one of 3 pills that I have to now take daily. The other two are Toporol and a Baby Aspirin. Not a big deal at all. I've even had a few minor cuts and to be honest I didn't see a difference in how quickly the bleeding stopped, thus far bleeding has been a total non-event (knock knock).

Ask as many questions as you can think of and get as much knowledge as you can prior to the surgery, it will only help you on your journey through this process.

Best of luck !

 

[Turkey Hunter]

The surgeon is Dr. Schmoker at FAHC which is a teaching hospital. He has several articles out. Our question is, what are the limitations of having the pulmonic valve replacing the aortic valve? How many other people have had this done and what are their experiences? We need to make a decision soon because his aorta is extended due to the valve issue and surgery is better sooner than later.

I had the Ross 8 years ago and am doing very well; with the exception of a new aneurysm that was found a few years ago and we are watching it.
My valves are performing fantastic.........I will be happy to answer any questions you may have; but I would suggest that you do a search and read alot of the post surrounding this procedure.
A very experienced surgeon (in the Ross specifically) is the key to a successful RP!!!!
How many Ross Procedures has your proposed surgeon performed?

 

[gadoty1]

i had the ross procedure when i was 19 and my aortic valve has been leaking ever since. Now it is leaking bad enough that i am going to have to get it replaced again really soon. It lasted 8 years for me so it was not really a successful operation. Because i was so young when i had it done i am now looking at possibly having a 3rd operation to replace my pulmonary valve in the future (hopefully another 20 years or so). I am not trying to discourage you, just telling you my experience. The ross procedure was the best option at the time because i wanted to have kids and couldn't do that on coumadin, and i hoped it would last 25 years or more like you read about. I guess some people it does and some it doesn't so that is a risk he will be taking. If he does need another operation down the road in 10-? years he will be a little older and more risky. If he gets the ross and it lasts forever great! I am gonna be getting a mechanical valve this time and will be on coumadin and after asking lots of questions and reading through this site i am not nearly as scared of coumadin as i was before. Good luck!

 

[Leeroy996]

Ross Procedure here with 100% success. 10 weeks post op and I can swim a mile and ride my bike 100 miles. I don't run because I hate running. I take no drugs. Stretch (the famous Ross opper) is out there but he's forgotten he ever had a heart problem. All of this thanks to the Mighty Paul Stelzer.

I have my surgery on video. Only go to the best for this operation, it's complex and everything has to be right. For me the Ross Opp is the holy Grail of valve replacement. The biggest statistical problems occurring with the pulmonary valve. The US is a little behind but there's been more than 150 patients worldwide implanted with the Melody Transcatheter Pulmonary Valve. . That means no OHS to replace the pulmonary valve.

I'd be happy to answer any questions.

 

[ALCapshaw2]

From what I've read on VR.com, the most prolific Ross Procedure surgeons are Dr. Paul Stelzer in NYC (over 400?), and Dr. Ryan in Dallas.

Our member StretchL (see Member List, click on his screen name and read his profile / signature line) had his surgery photographed and posted his story and photo-album (see link in his signature line).

Bottom Line: Find a surgeon who has LOTS of Experience (over 100? or whatever you are comfortable with) and a successful track record!

Regarding Coumadin, browse around in the Anti-coagulation Forum (read the "stickies") and check out AL Lodwick's educational website www.warfarinfo.com

 

[cday]

R 10 weeks post op and I can swim a mile and ride my bike 100 miles. I don't run because I hate running. I take no drugs.

While we are all thrilled for his wonderful recovery, I don't think anyone should be thinking their recovery will mimic that of a world class athlete like Leeroy996!

Just wondering, why tissue value was not an option? Did the doctor say why he was not offering that?

Do your research and go with your gut -- there is no magic answer.

 

[Leeroy996]

Bernard Unhassobiscay has a diary on www.myrossprocedure.com. He became USA Mountain bike Champion after his Ross opp.

Paul Stelzer does about 2 Ross Opps a month and he's up to 444.

 

[Karlynn]

I don't think recovery time and successful recovery has much to do with the type of valve one chooses. Leeroy996 is quite an athlete and I'm glad to read he's doing so well post- op. But I caution people in assuming his success is due to the fact that he got a Ross procedure and not a tissue valve or mechanical valve procedure. I'm not meaning that he is saying it is because of the Ross. He could mean that he's just doing really well post-surgery with no complications due to his Ross. But sometimes statements like that can read as if it's due to the type of valve procedure. We read many members posting "I had a mechanical and at 8 weeks I'm cycling X miles!" Or "I got a tissue and at 9 weeks I'm running X miles!". Post surgical recovery has to do with more with the person that had the procedure than the type of procedure they had. If that makes sense?

 

[gadoty1]

i wanted to add that i don't know if the surgeon that did my ross is "one of the best" because i was so young when i had it done i didn't research a lot and my parents didn't know any better. My new surgeon says he has "fixed" 2 of the previous surgeons ross procedures already this year. If he is having the ross i would definitely go to the best.

 

[Leeroy996]

Your funny Karlynn!!!!

If I had a mechanical valve I'm pretty sure my recovery would be even faster and maybe faster again with porcine. Why, because the Ross opp is very invasive - a lot of muscle gets cut out when the pulmonary is removed. My heart shook me for weeks.

It was a question of limitations. I'm about average compared to other cardiac athletes. And that's a mixed bag of valve choices.

 

[vtwhip]

Cday,

The surgeon did offer the pig or bovine valve option. He did say that there is 100% chance that my husband would need a second ohs in his lifetime because of his age, so we really ruled out that option.

Thanks for all of the input on valve selection. It really has become more of a complicated process now that the Ross is an option. The no coumadin is really appealing to my husband.

 

[Ross]

I will caution anyone looking at great outcomes because IT IS an INDIVIDUAL thing. One has no idea what the outcome will be until it is done. We have a few people around here that were looking for great outcomes and quick recoveries and either didn't get one or the other or both and they are not happy people. Some recover fine and some don't. Those are just the plain facts.

 

[dcpickle]

Count me as a successful Ross patient. Dr. Stelzer did my Ross almost 4 years ago and I feel great today. When Dr. Stelzer saw my echo results after 2 years he said since it looked so good this far out it meant I had a good chance at long-term success, so I'm happy with my choice.

I also was attracted to the idea of no coumadin. Most people who take it seem to get accustomed to it so that it becomes a normal part of their life, but I'm sure it's still a hassle.

You have to make your own educated choice, and go with it. Luckily all the choices will save your life, which is the goal, right?

If you wish to consider the Ross, I recommend you contact Dr. Stelzer and discuss it with him. He will be happy to talk to you at about your situation and whether you're a good Ross candidate.

Do lots of research and keep coming back here to ask questions. The people hanging around here are the greatest. They've all been through it and love to help!

 

[surfsparky]

Hi!

Valve replacement is such an individual choice. For us, we researched all the options and Chris (husband and patient) made the choice that felt right for him. He's happy with his choice and although there were some initial concerns with the donor valve (all settled down now), he's still very glad that he has the Ross Procedure 5 years ago. Personally, I don't think there's one perfect choice...all have their positives and negatives. Just arm yourself with as much knowledge as you can and make the choice that feels right for you.

All the very best!

Yolanda

 

[baldstuart]

Sucessful Ross Procedure

Sucessful Ross Procedure

Three Years and counting.Truly was the best decision for me.Base your decision on many things, but for me it was a feeling in my gut telling me this was for me. Best wishes to you.

 

[vtwhip]

Just found out that our surgeon has only done 13 Ross precedures so we're rethinking this option and looking into mechanical and tissue vavles. Both of us feeling overwhelmed.

 

[Karlynn]

If the Ross truly interests you, then seek out a surgeon who has done a lot of them.