i am so confused about ross procedure

[italex1]

last month my family doctor referred me to a cardiologist
as he believed there was something wrong my heart
surely enough when I met with cardiologist he told me that
the aortic valve needed to be replaced...he advised me that best option
would be ross procedure and scheduled a meeting with surgeon..
don't know much about this young surgeon..but after research
I discovered he only did 30 ross procedures...
since then I have been reading non-stop..but still very confused
if to go with mechanical valve or ross..as it seems that mechanical
is for life ...compared to ross..there is re-op 10-12 years later
I am woman almost 60 years old..good general health.. my main
concern is the re-op...I am sure I can take surgery now
but in 10 years I will be 70..and not so sure then
please help very confused lady

 

[Adrienne]

Welcome italex1. I cannot help you very much with your decision about a Ross Procedure or not, but I noticed you are from Montreal. So, bienvenue from another Montrealer.

 

[Guest]

There are several folks on the forum who have had the ross, they should be along shortly. With the ross, instead of one valve issue, you will end up having two. Wait to speak with the surgeon, and get a second opinion if you are not comfortable with this surgeon. Even though the cardio feels that is the best option for you, only the surgeon can determine if you are a good candidate.

 

[Bina]

Hello and welcome !
My surgery was done in Montreal also and my surgeon was the chief of surgery. He gave me my options during our first meeting and then I went home to
do some more research (and cry). I was only 46 yrs old at the time.
Anyway I happened to meet a couple of people living in my area who had undergone different heart valve surgeries and they were very open and honest with
their experiences. One of them needed re-op after 17 yrs and the other needed re-op after 8 years.
We just never know how things will turn out and how our bodies will react to the surgery, so all we can do is make the decision that we can best live with
at the time. For me, that was a mechanical St. Jude Regent and I would still choose the same.
You are wise to do your research and don't feel pressured to go with that surgeon, meet another one too. Best wishes with your decision.

 

[Mentu]

Welcome to VR. I am surprised that your cardiologist would suggest a particular procedure. Did he explain why this would be better for you in particular? At 59, I discussed the possibility of a Ross procedure with my surgeon in whom I have great confidence. He said that this is a technique that is performed much less often and is better suited to certain younger patients; he did not recommend it for me. I think that whatever the choice you make it is very important that you have confidence in your surgeon, otherwise, you will carry your doubts into the future which will not help your recovery. Your doctors work for you. If you have doubts about the technique to be used and the person who may perform the operation then you need to seek a second opinion.

Larry

 

[dfelder]

I had a Ross in 1997. It lasted 12 years. I would seek a second opinion. If I could go back, I would not have two valves replaced when I only needed one. If you have any specific questions, let me know.

 

[Fundy]

Many people do get the Ross Procedure and are happy with the results. But myself personally wouldn't feel comfortable choosing that option. I definitely wouldn't choose that option if the surgeon only did 30 of them.

 

[kfay]

I'd be hard pressed to let a surgeon who had only done 30 of anything operate on me, period. At your age, I'd definitely have a hard time opening myself up to the Ross procedure, going from a person with one valve problem to potentially two. I'd look for a second opinion.

 

[italex1]

first of all the cardiologist told me that ross procedure is rather something
new here in Montreal. he only knows this one surgeon that does it..but he says
the surgeon is excellent and he got specialized in London UK...the surgeon
came back to Montreal last year and has been doing the ross since then
he also recommended such procedure in order to avoid being a slave to coumadin
for the rest of my life...he told me that ross is for live and he made it sound
that it was something new..very interesting..but then I made some research on my own..
to discovered that such procedure is nothing new as it started in the 60's and that
such procedure is not for live .and there a re-op chance after 10/12 years
that's when I started to have second thoughts about my cardiologist and ross procedure

 

[Rebecca]

You need to get a SECOND OPINION from a different cardiologist. This is from the page of the top Doctor for a Ross in the U.S. that has done the most Ross Procedures. http://ps4ross.com/ross-procedure/candidacy/ The older you are the longer the life of a tissue valve (pig or cow). I am sorry to tell you that a Ross is not for life and your cardiologist should know this if he is a good cardiologist. Sometimes mechanical valves also don't always last a life time. I just got a pig valve in October and I was told twenty years and I am 55. When my valve does need to get replace I am hoping that aortic valve surgery will no longer be open chest.

 

[texasmike]

Ross Procedure

Ross Procedure

I had a ross procedure just over 10 years ago at age 55, and would make these comments: first, don't consider any surgeon who has not been performing ross procedures for at least 5 years, and who does less than one or two each week. This is a complicated procedure, every body is different, and you want someone who has seen a lot of it.
Second, talk with the surgeon about the reop statistics he personally has had. I had mine done by an extremely competent surgeon, but it needed replacement in 9 years. If I had known that, I would have gone with either a pig valve or a mechanical valve.
Third, I have now been the owner of a mechanical valve for 2 years. Coumadin ACT is not really a big deal, once you get used to taking a pill every day. The important thing is to keep your INR in range on a consistent basis. Home testing is the only way to go with this. I believe you need to test every week, and I can't imagine the hassle of going to a clinic once a week. Please be sure your cardiologist is in favor of this. If he is not, find another cardiologist quickly. The guy is living in the dark ages.
I have a good friend who has been a cardiologist for 40 years. He says that he has seen cardiology go through 4 complete changes in protocol during that time. That's one every 10 years! Be sure your cardio and surgeon are on the leading edge of these changes.

 

[spartangator]

Welcome to the site, Italex1. Considering your uncertainty overall, it does sound like the wise choice to talk with some other doctors. Some other opinions wouldn't hurt and should help you understand your situation better.

 

[rckrzy1]

there is no guarantee on any valve, ross, mechanical or animal. PERIOD. But I chose the ross for my lifestyle, I ride motorcycles and anti coagulants to me could mean problems in an accident. But at your age I would have real hard time convincing myself to get a ross. My surgeon had over 200 done when he did mine.

 

[Heart Of The Sunrise]

Welcome to the site Italex1. I began my journey back in October. Until I got educated I had a fear of Coumadin. The more I researched my condition and solutions the less I feared Coumadin. Because of good genes and extreme long life in my gene pool , a mechanical valve became the clear choice for me. My mother will be 90 on her next birthday -both of my grandmothers lived well into their 80's. I also have many aunts and uncle's who lived well into their 80's. I am day 32 with my ON-X valve. I feel very confident in my choice. Yes, I need to be aware of foods to stay away from because of my Coumadin dosage. But, overall so far my life has been minimally impacted by the necessity for Coumadin. I truly feared a re-op more than Coumadin. There are no guarantees but with some luck and good health habits I may have had my one and only OHS. Valve choice is a very personal decision. Having the Ross procedure or a mechanical valve are both good choices. Both will preserve and improve the quality of your life.
Best of luck with your decision. I credit those on this site and the complete researching of my options as the reasons for my decision to go mechanical. I just turned 57 last week.

 

[Mike1952]

I had pretty much decided on a mechanical valve but when I talked with my surgeon, he suggested a bovine valve because of my excellent health (other than the pesky leaking aortic valve). I was not taking any medications at all and am an avid exerciser. I am age 60. He felt a tissue valve should last over 15 years in a person my age and the risk of a second heart surgery, should it become necessary, was only slightly more than the first. So, my lifestlye would be virtually unchanged and I might have to have another OH surgery in a few years. I took his advice, and am very satisfied with the decision. It seems most of the folks on this site did a lot of research prior to their surgery and most are satisfied with the decision they made, whether it be a mechanical valve or a tissue valve. Good luck to you in your research and journey through this process!

 

[Allisoninoz]

Hi. My surgeon, Peter Skillington, is in Melbourne (Australia). He is close to the world leader in Ross Procedures, having done more than 300 in the past 20 years ... http://www.youtube.com/watch?v=FSBinqmy-DM
The Ross is certainly not a new surgery. It has been around since the 1970s/1980s but went out of favour for a while. Not many surgeons are expert in it. Most of his Ross patients are no older than mid-fifties. I was 42 when I had mine in Feb '11. I know a woman who had her Ross 10 years ago and is doing fine. I wrote an article on my experience. You might find it helpful. http://www.heraldsun.com.au/ipad/a-diary-of-open-heart-surgery/story-fn6bn9st-1226058541539
Whatever valve you choose, I suggest you have a very experienced surgeon.
You will be fine

 

[pellicle]

I had pretty much decided on a mechanical valve but when I talked with my surgeon, he suggested a bovine valve because of my excellent health (other than the pesky leaking aortic valve).

I am not sure what significance your health has on that choice ...

I was not taking any medications at all and am an avid exerciser. I am age 60. He felt a tissue valve should last over 15 years in a person my age and the risk of a second heart surgery

which means that you'd be setting yourself up for a surgery again in your (possibly late) 70's. Unless you're sure you'd just as sooner die from the valve failure or your have some other reasons to think you'd not make it past then anyway.

I would think that your recovery potential now was better than then ... so tell me again the logical reason for a tissue valve in your circumstances?

 

[pellicle]

I ride motorcycles and anti coagulants to me could mean problems in an accident.

me too ... and having had a few accidents I can say that there is often a seemingly line between minor accident with horrible injuries and a real shocker accident and me standing up and wondering how that all happened.

 

[hannahsmom]

My daughter was originally scheduled to have the ross procedure at the age of 10.
Her surgeon (very experienced in the ross procedure) and cardio felt it was the best scenario for her due to her age (has not yet had children, still growing, etc) They explained the it would most likely be her "new" pulmonary valve that would need to be replaced again and that those replacements can be done withouth invasive surgery. In the end she would have been a double valve patient, instead of a single valve patient.

Once she was in surgery her surgeon determined her current pulmonary valve, while functioning perfectly fine as a pulomary valve, would not be able to sustain the functions of an aortic valve any longer than if she had a donor tissue valve replacement. He ultimately decided to go with our Plan B and she was given an adult sized mechanical valve. Provided there are no complications, she may be able to go through the rest of her life without needing any additional surgeries. We can only pray this is the case.

While I was very upset at the time that she would have to receive anticoagulation treatment for the rest of her life, in the end I am very grateful to her surgeon for making this decision. If he hadn't she would have been a double valve patient needing replacement on both valves by the time she reached her 20's and would have been given a mechanical valve any way. She does very well keeping her INR stable. Has had no significant issues with bleeding. She's cheerleader, swimmer, and dancer. Anticoagulation treatment has not slowed her down one bit! In all actuality she is more energetic than ever before. Diet is just about being consistant, which is not as hard as it sounds.

Things you may want to consider:

- Is your surgeon referring to replacing the donor pulmonary when he is speaking of re-op or is he referring to swapped aortic valve (your old pulmonary)
- Get a 2nd opinion and definitely research more experienced surgeons. This was key to Hannahs cardiologist. She said the surgeon's experience is one of the most vital aspects of receiving a successful replacement.
- Is your pulmonary valve a good candiate to becoming an aortic valve and will it have endurance to last?
- What's plan b if the ross is not the best option?


The Ross Procedure is an amazing option to have if you are the right canidate. So your goal should be to find out if you are and if so, find the right surgeon!

Best wishes to you on your journey.

Kelly

 

[MtBiker]

You might check out Dr Paul Stelzer's presentation about valve choices for a 45 year old (can't bring it up on my tablet or I would provide the link). He is the most experienced Ross surgeon in the US and a big advocate of the procedure. I am 52 and having a tissue or mechanical avr along with ascending aorta replacement in a month but I met with Stelzer as one of three surgical consults and, though I did not choose to have the Ross, it was clear to me that he would have been the one to do it if I had gone that route.

My thinking is that there are some very successful Ross surgeries that don't require reoperation for twenty years or more. There are also some very difficult reoperations after Ross. With a fifteen year tissue valve I'm hoping for better anticoagulation drugs and/or longer lasting tissue valves and/or mechanical valves that don't require ACT. I'm choosing less risk now while accepting the need for a second operation down the road.