Valve selection

[Ramesh]

Hi all
This is my first message and I am happy to send this to all of you.
I have to choose the valve type on Monday and go into the OR on thursday (April 29th). I am very much inclined towards ross procedure. But however, a few physicians with whom I talked said, I might have to undergo another surgery in 15-20 years. They asked me do you want your sternum to be broken and have the pain again. Rather go for a mechanical valve. They also said that coumadin is not bad as we think. However, I want to be atleast free of drugs for 20 years. Can someone throw some light on the following ??
1. Many say that the pulmonary is the one which needs replacement in 15-20 yrs. But many also talk about some leaks in the aortic position after ross. Have anyone talked to their surgeons about those leaks and do they feel that the leaks are minor and trivial. How permanent is the aortic after ross.
2. What will happen if by 20 yrs both the pulmonary and aortic gets weakened and replaced. By that time I will be 53 yrs and will replacing both a problem.

Looking forward to your answers.

RAMESH

 

[Tom F.]

First, you should do a wide search on the internet for published Ross procedure results. The International Ross Registry in Montana does publish results from many doctors, and from that you can see the results over a large number of cases covering many years. From that you can draw your own conclusions.

With the Ross there is a risk of reoperation. That risk can come from many sources, the aortic valve, and the pulmonary are the most likely. From what I have read, however, over the long term the risk for reoperation is not huge. I had a valve sparing procedure done, but had that failed I chose a Ross as my second option. The reoperative risks did not scare me.

You should understand that even a mechanical valve carries a slight risk of reoperation. That risk is very low, but its not 100%. No matter what procedure you and your doctor select, there is a risk of reoperation and there is an operative risk as well.

As to a second operation at 53 I doubt that would be a problem. We have a lot of people that have had surgery at an older age than that. I have a friend that, at age 51, received a porcine valve, which means virtually 100% chance of reoperation in 15-20 years, and he is comfortable with that possibility. You should understand that each person's reaction to any operation is rather unique. Mine was no problem at age 49. My doc told me that I was the poster child for how open heart surgery ought to go, and other than participating here, that entire process is nothing more to me than a memory. However others have a more difficult time, our Ross is one example of that. So you never know.

Lastly, a Ross is not a surgery for beginners. Find out how many your doc has done and his results. There are enough docs around that you can always find another to do yours. The International Ross Registry has a list of docs that have shown particular expertise in the Ross.

Valve selection is a very personal matter. I wish you the best in coming to your decision.

 

[Debrinha GT]

the right place

the right place

Hello New Comer, I know what it's like to have so many doubts and I wish I'd come across a site like this years ago. You've come to the right place and you can't even begin to imagine how much it should help you as you write and get the answers. I've had three MVR{replacements) and the fourth one is unfortunately on its way. By what I've seen here there are advantages and disadvantages in all types of valves and there's so much to be considered before you make a final choice. I've had all tissue ones and although I think of going for a mech next time, I'll still have to discuss it with the surgeon when the time comes. Well, you still have a couple of days to do your research and get some more opinions. Try heartcenteronline.com as well , they can provide you with very good information. Whatever you decide, good luck and keep us posted

 

[dwfreck]

Ramesh,

Everyone's valve choice is completely personal, so I can't really tell you what to choose.

However, I have faced that same choice, so I can tell you what I chose and why:

1) I chose the Ross Procedure. Why? I wanted some time without Coumadin to do things like downhill skiing, which could cause an internal head injury, which is a VERY BAD THING when you're taking Coumadin. So, that led me to choose a tissue valve instead of a mechanical valve. I selected the Ross Procedure because it had the longest durability of any of the tissue options available to me (my doctors claimed 20 years to life for the Ross Procedure). I'm relatively young, and relatively healthy (except for the valve problem), so I'm not particularly worried about a reoperation.

2) I also had a "plan B" choice in case the Ross Procedure didn't work out for me: I chose a Carpentier-Edwards bovine pericardial valve, again, because it had the second-longest durability of any of the tissue options available to me (my doctors claimed 15-20 years for the CE bovine).

If you're not a downhill skiier, or otherwise at risk for head injuries, or not a young as I am (I'm currently 39), or you're more concerned about a reoperation than I am, then, obviously, you'll make a different choice.

One important thing you need to know about the Ross Procedure: not everyone who selects it as their choice gets it. The Ross Procedure is a very complicated surgery that depends on several parts of your heart being in "perfect" and/or "normal" condition. Your doctors won't really know if you're "perfect" and/or "normal" until they get your chest open and get a look at your heart. That's why I had a "plan B" choice. In fact, it turns out that my heart wasn't completely "perfect" or "normal", so, even though I asked for the Ross Procedure, what I got was the CE bovine valve.

This forum is a great resource for valve information. Read as much as you can about your options, weigh all of the advantages and disadvantages, consider your current lifestyle and your desired future lifestyle, and make the choice that feels right for you. Good luck with your choice, and please let us know what you eventually decide.

 

[Heather Fisher]

Hi Ramesh,

I had a Ross procedure done this last July at age 46. It is truly a hard decision to make as to what kind of valve to select. So far I am happy, healthy, and in great shape. The surgery is not easy no matter what option you choose. Just look into all of the options and pick the one that is best for you. I felt I could withstand an additional surgery in 15-20 years if needed and I was willing to take the risk. I deal well with pain. Theoretically just the pulmonary valve will eventually need repalacement and that is an easier operation than rplacing the aortic valve. My surgeon also told me the risks of a re-operation were the same as those of taking coumadin. Just make sure you have a surgeon you are comfortable with and learn all you can about this option before making the decision.

Heather

 

[Stitch]

Ramesh,

I had a Ross 3 years ago. For me the surgeon is the key. I did a lot of reading and selected several making a list. I was accepted by the surgeon I wanted most, went to see him and had the surgery. I was 52 at the time. I am doing quite well with no leaks or problems. You will find a lot of positive as well as negative talk about a Ross. For some reason I just knew it was the right decision for me.

 

[tobagotwo]

You should be aware that there is NO valve choice that eliminates the chance that you may be put on some medications (including Coumadin). That said, there are options, including the Ross procedure (you sound young enough for that to be a viable option) that offer a much reduced chance of needing continuing meds.

Suggestion:

Look in Valve Selection, Newly Diagnosed (by Carlasue) and look at the posting by Bryan at the end of page two for some Ross Procedure stats, if you like.

There is also quite a bit of discussion about pros and cons for different valve types in both pages of that thread. And there is a reference to another good valve selection thread in a posting there by GranBonnie.

It's good to listen and learn, but don't let yourself be bullied. You live with your choice, not the cardiologist. Those in the medical profession usually see a very narrow view of the effects of their work on their patients.

Even in this website, we rarely agree on the choices, largely because every choice has its drawbacks and strong points. However, you will at least get a wider view of the realities and ramifications of your choice.

Good fortune, Ramesh.

 

[Raverlaw]

Why? I wanted some time without Coumadin to do things like downhill skiing, which could cause an internal head injury, which is a VERY BAD THING when you're taking Coumadin.

Dale,

I'd venture to say that an internal head injury is a VERY BAD THING, period! Those of us who participate in sports with a risk of head injury like skiing, snowboarding, bicycling, white water kayaking or rafting, climbing, etc. should always wear appropriate head protection.

 

[dwfreck]

Bill,

I agree with you about wearing protective gear. However, my cardiologist nearly turned white in shock when I asked him about skiing while taking coumadin, and he's not normally a reactionary type of person. He wasn't concerned about external bleeding from cuts, or internal bleeding around bruises, but he was alarmed about internal bleeding around broken bones and in and around other organs, especially the brain. His opinion boiled down to this: mechanical valves offer a nearly-permanent solution, and are the best choice for many people; however, if you don't want to give up contact sports, you should try to avoid coumadin if you can, so select one of the tissue valve options.

Ramesh,

Again, this is just one example of a doctor's and patient's opinion and decision process. Choose what feels right for you based on the opinions you get from the professionals you're working with.