Ross Procedure?

[soccerdad]

Hi,
I'm new so excuse the length. I'm 46 in fairly good shape and was born with aortic stenosis and over the last year I've certainly been feeling the effects. Shortness of breath, tight chest, and can't do the things I used to do. When I was 5, they told me I'd have to have valve replacement when I was 45, so they were dead on it. Anyhow, I had my checkup today with my cardiologist. We've scheduled a heart cath for next Monday. We've briefly discussed my choices for valve and I mentioned the Ross Procedure and he told me he'd check into it. He told me today that the Ross Procedure has "gone out of favor".... Not exactly sure what that means but it looks like their recommendation is for tissue or mechanical. I'm 46 and really don't look to be on blood thinner for the rest of my life and feel that the benefits of a dual valve replacement out-weigh the thought of blood thinner. Even before today, I knew I would not use this group to perform my surgery but would opt to go to University of Alabama / Birmingham (UAB). Does anyone have anything to add to the comment that the Ross Procedure has "gone out of favor" or should I follow my gut, go to UAB, get a second opinion and talk to the surgeon... My cardiologist is not the surgeon and I feel like they may just try to do what they "normally" do...

Thanks in advance.

 

[escargome]

Welcome Soccerdad,
I can't comment on the Ross Procedure since I had got a AVR replacement with tissue. However, I firmly believe a second opinion never hurt. Research as much as you can into whatever procedure you think you are comfortable with. Good luck in your search for answers and keep us updated as you travel your path to personal peace of mind.

 

[Megan]

hi there....i just had my surgery 5 months ago-i had considered ross but my cardiologist- who is an adult congenital heart specialist backs up what you heard that the ross has fallen out of favor- at least at columbia -it could have to do with # of ross's performed vs success.. i think if you go to someone who has nod alot of ross then there are better results...but just do your research and do whats comfortable. Im 39 and newly on coumadin and it is so not a big deal at all...only thing i would advise at your age--you might want to consider a tissue--my mechanical clicks away at night- and im not hopeful it will go away-- good thing is i am accepting it as is my husband good reminder to live life tot he fullest!

good luck!
megan

 

[briansmom]

I think you should get a 2nd opinion. I think that there are fewer doctors that specialize in Ross procedures so you will have to do your homework. Check out all your options and keep an open mind and you will find the best choice for you.

 

[ALCapshaw2]

One / some of the Surgeons at the Cleveland Clinic (#1 rated Heart Hospital) have discontinued recommending the Ross Procedure because of a high rate (20%) of "Early Failures".

I know the Primary Surgeons at UAB and am not aware of any who promote the Ross Procedure. That does not mean that they do not do them, but I doubt they do them frequently.

IF you decide you want to pursue the Ross, I recommend that you find a Surgeon who does them Frequently and has a Good Long Term Track Record. The most prolific RP surgeon (over 400) is Dr. Paul Stelzer in NY. I believe Dr. William Ryan in Dallas/Fort Worth TX is another. Our member "StretchL" believes Dr. Stelzer 'walks on water'. See his profile (Community / Member List / "S" / StretchL).

It sounds like you have heard a lot of the 'horror stories' about living on / with Coumadin / Warfarin. Read the "stickys" at the Top of the Thread List under the Anti-Coagulation Forum to learn the 'reality' of living on/with Coumadin. Also see www.warfarinfo.com

The Bovine Pericardial Tissue Valves have the longest durability (20+ years in patients over 60/65) but wear out faster in younger patients. Porcine Tissue Valves wear out even faster.

There have been long (and passionate) 'discussions' about Mechanical vs. Tissue Valves in the Valve Selection Forum. Start with the "stickys" there also.

'AL Capshaw' (UAB 'valve grad')

 

[Bill B]

I'm guessing that the Ross procedure may be better with some forms of AS than others. My surgeon told me my pulmonic root could not be transplanted as it was weak as well and that this is common with BAV. He had done many Ross procedures and Ross repairs and said it was contraindicated in my case.

 

[Lily]

Welcome to the site. You said you were born with AS? Do you know if you have a genetically malformed valve? Just wondering. Also, sometimes a malfunctioning heart valve can also have more than one issue. For example, genetic malformation and endocarditis damage, or a malformation combination with radiation damage, etc.

Second opinions are a great idea. Even third opinions. Or more. I have also read here, in years past, that some members have even had success emailing specialists for further information and/or recommendations. Keeping a personal heart health file of your test results can sometimes expedite those kinds of communications.

 

[dcpickle]

I had a Ross and it has been good for me. I basically have the best of both the mechanical and tissue valves: No Coumadin, but with a reasonable hope of no repeat surgeries, or at least not for a long time. The Ross is a specialty surgery, so not all surgeons can/will do it. You do need to find someone who does lots of them. I researched and found Dr. Stelzer all on my own, contacted him, went to NYC, and had the surgery, all pretty much without help from my cardiologist. If you are still thinking about a Ross, you should call Dr. Stelzer. Trust me, he'll be happy to talk to you at length about the Ross Procedure. Not only does he walk on water, he also hung the moon. You might even consider going to him. I went from Atlanta to New York to go to him; you're not necessarily limited to who your cardiologist sends you to.
I don't want to sound like some sort of shill for the Ross or Dr. Stelzer, just want you to know that the Ross Procedure is quite a viable alternative for many people, if you can find the right surgeon.
Here's a truth: There really are no bad choices. All the valve alternatives will save your life. You must become informed and choose the one you feel best about, then after surgery, you will most likely be very happy with your new valve, whatever it is!

 

[Bill B]

Nice outcome for you, dcpickle!

 

[everstochance]

dcpickle could not be more correct. The Ross is a specialized procedure that is not for everyone. But, if you are a good candidate, the Ross does provide you with an opportunity to survive and thrive drug free.
I have a friend in Tennessee who had a Ross performed in Nashville four weeks ago and another in New Zealand who is going in for her Ross next Thursday. The Ross is still very much alive and well.
Get a second opinion.

 

[soccerdad]

Thanks so much for the great info everyone.

Who and where in TN did your friend use?

 

[river-wear]

Hi soccerdad,

You might also want to read this thread: http://www.valvereplacement.com/forums/showthread.php?t=33326

Valerie is having a Ross in Knoxville next Friday.

I think she mentions who her surgeon is in another thread, but you could also PM her to ask.

 

[leecrowley]

I give the Ross a thumbs-up!!!

I give the Ross a thumbs-up!!!

I had my Ross Procedure over 3 years ago, and have absolutely no regrets. My follow-up visits have been excellent, and I have no reason to believe I'll have another heart surgery anytime soon.

This is my opinion only........I think the Ross Procedure has fallen out of favor with some because the rate of "re-surgery" has gone up in the past few years. But I think it's gone up because many more less-experienced surgeons did the Ross in the late 90's and early 00's. And many of the "failures" are from the those surgeries. If you look at the very few Ross surgeons who have well over 100 surgeries, I'd bet their re-surgery rate is less.

By the way......my cardiologist tried to talk me out of the Ross Procedure, too. I educated myself with the great information on this Website and others. Then I found the surgeon I wanted and drove down to Dallas to have him check me out. After that visit, I knew the Ross was for me, and I've been at peace with that decision ever since.

Good luck to you.

 

[gadoty1]

I had the Ross procedure in 2000. Last year I had a mechanical valve put in because my Ross procedure "was not a successful surgery". Now my pulmonic valve leaks very slightly also and my surgeon tells me i will probably have to have it replaced at some point in my life. I don't know if it would have made a difference if I had had a different surgeon but I do know that hidsight is 20/20. The reason I had the Ross is that I was 19 years old at the time and I wanted to have children so that seemed like the most long lasting/drug free way to go. If i wasn't a female of child bearing age I probably would have gone with a mechanical valve the first time to avoid any chances of needing re-op.
I hate to be a downer but through my personal experiences I am not a fan of the Ross procedure. My surgeon who put in my On-x valve does not recommend anyone have the Ross because he has had to repair a few of them. I was his 3rd Ross repair in one year.
As far as the mechanical valve goes, I have absolutely no problems with it. Coumadin is no big deal at all. I am 29 years old now and I live a normal active life (maybe a little more crazy now that I know how short life can be). I feel comfort knowing that I have this very sturdy mechanical valve that I should never have to replace.
There are many people who have the Ross and it is successful and they are happy with their decision. Then there are a few who aren't so happy with it. I wonder how many people regret getting a mechanical valve? (really, I am curious about that).

 

[vhmoriarty]

Oh hi so sorry getting to this thread so late.

Yes I am having the Ross Procedure done next Friday. I met a woman in my area who had the Ross done at the first of Oct. She has had no problems.

My surgeon has performed 73 valve replacements and that was over a month ago, so he is probally up on numbers now. He has had 0 deaths, and only 4 repairs, and one was just cause he didnt like the way it looked.

Yes it is a double valve procedure and myself didnt want to be on blood thinner the rest of my life.

Please definately check into your options.

PM me if you need anything.

 

[vhmoriarty]

I had my Ross Procedure over 3 years ago, and have absolutely no regrets. My follow-up visits have been excellent, and I have no reason to believe I'll have another heart surgery anytime soon.

This is my opinion only........I think the Ross Procedure has fallen out of favor with some because the rate of "re-surgery" has gone up in the past few years. But I think it's gone up because many more less-experienced surgeons did the Ross in the late 90's and early 00's. And many of the "failures" are from the those surgeries. If you look at the very few Ross surgeons who have well over 100 surgeries, I'd bet their re-surgery rate is less.

By the way......my cardiologist tried to talk me out of the Ross Procedure, too. I educated myself with the great information on this Website and others. Then I found the surgeon I wanted and drove down to Dallas to have him check me out. After that visit, I knew the Ross was for me, and I've been at peace with that decision ever since.

Good luck to you.

I was told that one reason that the Cleveland Clinic is so against the Ross now, is they were the only ones doing them in the early 80's before technology had become more adapted, so they had alot of failures with it. But if you find a expierenced surgeon, one who is only in that speciality such as mine, that is all he does in Tennessee is the Ross Procedure, then you will have a higher sucess rate. Also they want to make sure all your other valves are working properly before they go ahead with the Ross as well.

Good Luck

 

[vhmoriarty]

Hi,
I'm new so excuse the length. I'm 46 in fairly good shape and was born with aortic stenosis and over the last year I've certainly been feeling the effects. Shortness of breath, tight chest, and can't do the things I used to do. When I was 5, they told me I'd have to have valve replacement when I was 45, so they were dead on it. Anyhow, I had my checkup today with my cardiologist. We've scheduled a heart cath for next Monday. We've briefly discussed my choices for valve and I mentioned the Ross Procedure and he told me he'd check into it. He told me today that the Ross Procedure has "gone out of favor".... Not exactly sure what that means but it looks like their recommendation is for tissue or mechanical. I'm 46 and really don't look to be on blood thinner for the rest of my life and feel that the benefits of a dual valve replacement out-weigh the thought of blood thinner. Even before today, I knew I would not use this group to perform my surgery but would opt to go to University of Alabama / Birmingham (UAB). Does anyone have anything to add to the comment that the Ross Procedure has "gone out of favor" or should I follow my gut, go to UAB, get a second opinion and talk to the surgeon... My cardiologist is not the surgeon and I feel like they may just try to do what they "normally" do...

Thanks in advance.

MAke sure to look on my profile. Look at all the threads started by me if you want to know more about the Ross Procedure. Good luck with your choice.

 

[COLLEEN S]

I have a history much like this persons. I am not a fan because, frankly, it did not work out for me. 11 years after the Ross, I had to have my aortic valve replaced and aneurysm repair. My aneurysm was 8.0 in the operating room. My valve was not able to be spared with valve sparing procedure. My valve was "shredded". My pulmonary is still regurgitating, and my surgeon said it may need to be replaced at some point.

I had the Ross procedure in 2000. Last year I had a mechanical valve put in because my Ross procedure "was not a successful surgery". Now my pulmonic valve leaks very slightly also and my surgeon tells me i will probably have to have it replaced at some point in my life. I don't know if it would have made a difference if I had had a different surgeon but I do know that hidsight is 20/20. The reason I had the Ross is that I was 19 years old at the time and I wanted to have children so that seemed like the most long lasting/drug free way to go. If i wasn't a female of child bearing age I probably would have gone with a mechanical valve the first time to avoid any chances of needing re-op.
I hate to be a downer but through my personal experiences I am not a fan of the Ross procedure. My surgeon who put in my On-x valve does not recommend anyone have the Ross because he has had to repair a few of them. I was his 3rd Ross repair in one year.
As far as the mechanical valve goes, I have absolutely no problems with it. Coumadin is no big deal at all. I am 29 years old now and I live a normal active life (maybe a little more crazy now that I know how short life can be). I feel comfort knowing that I have this very sturdy mechanical valve that I should never have to replace.
There are many people who have the Ross and it is successful and they are happy with their decision. Then there are a few who aren't so happy with it. I wonder how many people regret getting a mechanical valve? (really, I am curious about that).

 

[soccerdad]

I've got an appointment with Dr. McGiffin (UAB) next Friday to discuss. I assume I'll be told that he'd recommend mechanical. I've gotten 2 unbiased opinions from family friends (cardiologist/surgeons) and they don't recommend the Ross. I think the re-op % is higher than I'd like it to be. I'm going in with an open mind. I've heard good things from Dr. McGiffin. I hope all goes well and we can get on with it. Cath this coming this Monday.

 

[everstochance]

MAke sure to look on my profile. Look at all the threads started by me if you want to know more about the Ross Procedure. Good luck with your choice.

Say a little prayer for Valerie. Today was her big day.