Ross Procedure or Mechanical Valve for 29yo?

[Thomas]

Hi, I am new to this site and am making an effort to decide what type of surgery I should have (I am currently scheduled to have a mechanical replacement Nov 26). I am a 29 year old healthy, active and what I would like to think as athletic male. Four months ago I found out I had a bicuspid aortic valve along with endocarditis. I was treated for the endocarditis with 6 weeks of antibiotics, which I finished last week. My valve was damaged from the endocarditis and my aortic valve is leaking a considerable amount of blood. My aortic root is currently dialated to 4-4.3 cm. I really don't want to be on blood thinners the rest of my life. I seem to hear conflicting info on the Ross Procedure and am very confused as to what I should do. I live in Des Moines, IA and have met with Dr. Vasant Jayasankar (Iowa Heart Center) about the Mechanical replacement, with whom I am currently scheduled to have surgery. I am scheduled to meet with Dr. David Hocksmuth (or Hockmuth), who is also a cardiothoracic surgeon at Iowa Heart for a second opinion tommorow. He has told me he has done 150 Ross Procedures with only 3 coming back for reop. If anyone has some good questions for me to ask him I would appreciate it. He is the only surgeon in Des Moines and possibly all of Iowa that does this procedure. I was also told that a group in Atlanta stopped doing the Ross a few years back because of its poor results. Any information would be highly appreciated.

Thank you and God bless.

 

[A New Beginning]

i am not familar with the ross proceedure, i am also 29 and have the mechanical. things are going well for me. i would definately get the second opinion to ease your mind.

Aja

 

[francie12]

Hello to a fellow Iowan! My son and I met with Dr. Hockmuth about four years ago to discuss the Ross procedure, and at that time he had only done about fifteen--he's been busy since then!--a good sign--and that is a very encouraging percentage for reop. We liked him very much--were impressed with the time he took with us and his thoughtful answers to our many questions. We are still in watch and wait mode, but he is on our short list for when the time comes. If you want to get another opinion don't forget that the Mayo clinic is not far away from us. I'm guessing that will probably where we go. Best of luck to you. I'll be watching for your posts and and sending good thoughts. All the best.

 

[surfsparky]

Hi Thomas,

Welcome to the forum!
My husband Chris had BAV and had the ross procedure performed 5 years ago at the age of 32. He has been very happy with his choice. The only thing we would do differently is actually replace or reinforce the aortic root as oftn these can enlarge post surgery in BAV patients. But it sounds like that would be on the cards for you since you have an enlarged root anyway. Chris curently takes one baby asprin and a small dose of a beta blocker. He's back to his beloved surfing and works as an electrician. We have 3 gorgeous children...life's good!

There's no one perfect valve choice, they all have some drawbacks but i would recommend researching all the options and make the best choice for you. Also too, if you do choose the ross, ensure that you have an experienced surgeon as it is more technically difficult.

Let us know if we help in any way,

All the best in your search...it can be such a daunting time,

Cheers,
Yolanda

 

[Ross]

Hello Thomas and welcome to the forums. My first question is why don't you care for anticoagulants? I'm betting your like every new person that comes in here and has been told a whole bunch of rubbish about Coumadin. I could be a very rich man if I got paid for every time I here this. I would encourage you to read the stickies in the anticoag forum and look at what mechanical valvers are doing in the active lifestyles forum as well as educate yourself as part of this decision process, on Coumadin, from www.warfarinfo.com Coumadin gets a bum rap from the medical community and stone age educations. They seem to refuse to learn anything new about it.

That being said, I would want someone who's done a whole lot more then 150 of these operations for a Ross. I'm not a Ross person obviously, just named that, but those that have Ross's will be along to address that end of things.

I'm for anything that will keep you off the table again if it's at all possible. Mechanical would be the closest to that you can get, but even with it, there are no guarntees that you won't need yet another operation.

 

[skeptic49]

Welcome to VR, Thomas...I can't help with info on your situation, only pass along best wishes for a successful outcome. I'm sure others here will have plenty of good advice to give.

Jim

 

[WayneGM]

Welcome to VR. Glad you found us and decided to join. I can't answer your question but wanted to welcome you.

 

[dcat96]

my experience for what it's worth

my experience for what it's worth

Hi Thomas,
I am 9 years older than you, active, and 9 weeks out of aortic valve replacement surgery with a mechanical and am now on coumadin. I did a lot of research prior to surgery and also looked into Ross. My dr and surgeon both rec the mechancal and I was scared crazy about the meds after...well 9 weeks out I am living a normal, active life again, still soreness from surgery but coumadin is NO BIG deal! Now that is my experience ...read through out forum to get others! Go with your gut and what feels right for you...but choose a surgeon who is doing the surgery daily!

 

[ALCapshaw2]

Greetings Thomas !

The most prolific Ross Procedure Surgeon is Dr. Paul Stelzer in NY (over 400), followed by Dr. Ryan in Dallas.

Do a Search (here on VR.com) for their names to find LOTS of posts and information on them. Check out the Signature Line of member "StretchL" who has a PhotoJournal of his RP Surgery with Dr. Stelzer on his website.

Here is what one of our members said about them:

Ross surgeon

--------------------------------------------------------------------------------

I talked to two Ross surgeons...both whom have been mentioned.

1. Dr. Stelzer - world class guy and also surgeon! I had a couple of great conversations with him and felt very comfortable having my surgery performed by him (only limiting factor for me was ease of travel for me and my family members - to NY).
2. Dr. William Ryan - who actually performed my Ross. Same - world class guy and surgeon. He's done alot of Ross procedures and did mine very well. I'm almost 6 months post op and doing very well. The new Heart Hospital at Plano is simply amazing...almost resort-like.

You can't go wrong with either one of these guys.

Good luck to you!
__________________
Doug Atkins
Bicuspid aortic valve
Ross Procedure - 2/12/2008 by the wonderful Dr. William Ryan
Heart Hospital Baylor Plano (amazing)

[End Quote]

I hope that your surgeon is planning on addressing your enlarged root (and has the experience to do that). You may want to read through the Bicuspid Aortic Valve and Connective Tissue Disorder Forum for info on those related issues.

When it comes to Mechanical Valves, the 'Latest and Greatest' in technology was introduced by On-X in 1996. This valve addresses the 'problem areas' of the older designs (ALL from the Same Designer, Jack Bokros, Ph.D) who has been designing Heart Valves going on 40 years.

See www.heartvalvechoice.com and www.onxvalves.com for more details on those advancements / improvements.

That should keep you busy!

'AL Capshaw'

 

[Janine]

Hi Thomas,
I had the Ross procedure on September the 12th this year, I am 37, I know it was only 9 weeks ago but so far everything has been fantastic, a baby asprin every day at thats it!
I am feeling fantastic I was extremely confused about valve choice before my surgery, I went into surgery hoping for the Ross my back up was a St Judes mechanical, my surgeon said when he opened me up and saw my heart he said it was just perfect for the Ross. I also had a reduction aortoplasty.
The only reminder I have of my surgery 9 weeks out is an itchy scar.....
All the best for your up coming surgery.

Cheers
Janine

 

[erica688]

From my experience...I had the ross procedure a few years ago and it lasted me exactly 10 years. I was too young at the time to make my own decision but my parents went forth with the ross procedure. At that time it made the most sense being that I am a girl and was so young and eventually wanted to have children. I dont know if any of this helps but if I would have known that it would only last 10 years I would have went with something that last longer. So my point is with the ross procedure you will evenually face another operation after that and with mechanical that could be your last surgery. My third surgery I will most probably get a mechanical valve. Hope that helps a bit.

 

[spartangator]

Welcome Thomas,
I'm also a Ross patient, just past the one-year mark. I don't want to pretend everything's been easy because all heart surgeries are a big deal, but I have no complaints about my choice. I'm back to running (did a 10-mile race two weeks ago, slowly mind you) and lifting weights without problem--other than the strength lost while healing, of course.

I also had plenty of concerns about the Ross beforehand, especially because I found several things about places dropping the procedure. When I looked deeper, though, it seemed like the facilities that were discontinuing it were doing so because they didn't have experienced people performing it (just my opinion). The outcomes are quite different for experienced and non-experienced surgeons.

Know that you will make the right choice for you after getting multiple opinions. You'll see people on here who've selected lots of different options and are doing great. It's a scary time, but the best things you can do are to learn everything possible and go with an experienced surgeon. That'll let you ask informed questions and get responses from someone who's been there multiple times.

As you'll hear over and over on here, valve selection is an individual choice influenced by lots of things. After thorough conversations between you and your physicians, you will do what's best for you. We're all here to talk about our experiences, but no one's will match you perfectly so keep your goals and preferences in mind always.

All the best,
Brad

 

[Bryan B]

Erica,

I'm sorry your Ross Procedure didn't last more than 10 years. But if you had gotten a tissue valve or a mechanical valve there is no guarantee that they would have lasted any longer. That's the thing about valve surgery...it doesn't come with a warantee.

As for the 150 Ross surgeries...that number is perfectly acceptable. My surgeon had performed just over 100 Ross Procedures and I was comfortable with that. He was also fairly young, the chief of pediatric cardiovascular surgery at Duke, and had probably done at least 50 pediatric heart and heart/lung transplants. Quantity is good but there are other factors to take into consideration when choosing a surgeon.

And now to burst your bubble a bit. With an aneurysm the size you have and a bicuspid valve, you may have an underlying connective tissue disorder which would prevent you from being a candidate for the Ross Procedure. The 2 surgeons that Al mentioned are the best of the best when it comes to doing RP's on patients with bicuspid valves. I would try to get in touch with one of them by phone or e-mail and see if they would at least discuss your options with you. As busy as these guys are you'll be surprised that most surgeons (especially the great ones) are willing to share their experience with you and possibly your surgeon. I know it's a lot to think about with surgery a week away. I was "lucky" in that I didn't have a bicuspid valve to complicate my decision to go with the RP.

 

[Duff Man]

alot of surgeons are shying away from the Ross procedure for BAV patients because of the theory that BAV is a systemic connective tissue disorder that also effects the pulmonary valve's durability. For that matter, there are people that believe BAV has a host of implications. I happen to be of this school of thought.

 

[CHDDoug]

Welcome!

Welcome!

Glad you found the website! What a great resource. I am 34 years old (male) and like to think of myself as athletic as well. I've always lifted weights, played sports (baseball, football, golf, etc). I found out 4 years ago about my bicuspid aortic valve and just had it replaced in February of this year. I chose to go with the Ross Procedure...I just didn't want to have to deal with warfarin for the rest of my life, plus I didn't want the possibility to have any activities restricted. There are lots of folks on here that deal very well with warfarin (coumadin) and I'm sure plenty that don't restrict any of their activities. I just felt comfortable with the Ross. To me, the MOST IMPORTANT criteria for looking at the success of the Ross is to actually look at the statistics of a surgeon that does alot of them! There are some centers that don't/won't do them anymore because they don't do alot of them, and because of that, their statistics aren't that good. If you talk to a center that has a surgeon or two that does quite a few of them (Dr. Ryan in Dallas, Dr. Stelzer in NY), then their statistics are pretty good. So, if you are considering the Ross (and I haven't regretted it one single moment), then I would find a surgeon that does ALOT of them. There are several things that have to be checked while your chest is OPEN in order to verify that you are a candidate...and that surgeon needs to be really good at that, and also having a firm back-up plan just in case you aren't.

I will send you a private message with my phone number in case you want to talk to someone that has been exactly where you are.

Best of luck and God Bless! Keep us posted so that we can send the prayers up on your surgery day!

 

[Sjoerd]

Hello Thomas,

About 11 years ago I have had the Ross-operation when I was 18 years old. The upside is that you don't need to take coumadin. This has enabled me to do offroad motorcycle riding for the last few years. The downsides are that the tissuevalve will need to be replaced at some point in the future. Though it's likely that by that time they can do it without the need for OHS. How long the autograft will last is unknown. In my case the autograft is still fine. But unfortunately in my case the aortic blood vessel has expanded at the position of the autograft (It's hard for me to explain in English.) Therefore I will get another OHS very shortly (1 or 2 months). The aortic blood vessel needs to be replaced or repaired and the valve will probably replaced. (I'm still trying to decide what's best for me.)

In any case, whatever you choose, all the best.

 

[Thomas]

Thank you all so much for your responses. They have been very helpful in my quest to make the best decision for me and my family. I met with Dr. Hockmuth (Des Moines, Ia Surgeon who has performed 150 Ross') today. He told me he didn't think the underlying connective tissue disorder would be an issue for me as he didn't seem to really believe that it was much of a factor. This seems to be a rather controversial issue. Is there any way to tell if one's tissues are compromised pre-op or what about post op. I do understand that having a BAV and a dilated aortic root are signs that the tissue may be compromised but how can I know for sure (or can't I). Also, my first surgeon said my aortic root was between 4 and 4.3 and today I was told it was 5.0...two different surgeons but from the same echo?? Is it normal to have this large of a variance. Maybe it doesn't matter as they both want to replace the root as well. Dr. Hockmuth told me I was an excellent candidate for the Ross and really didn't list any red flags at all. He said my pulmonary valve has a trace of insuficiency, but that this was "normal." He reports he has had two bi-cuspid pulmonary valves, which lead to plan B (for me this would be a mechanical...not sure btw the St. Judes and On-x). I'm not sure what to make of all of this.

Thanks again,

Thomas

 

[Thomas]

follow up questions

follow up questions

Thank you all so much for your responses. They have been very helpful in my quest to make the best decision for me and my family. I met with Dr. Hockmuth (Des Moines, Ia Surgeon who has performed 150 Ross') today. He told me he didn't think the underlying connective tissue disorder would be an issue for me as he didn't seem to really believe that it was much of a factor. This seems to be a rather controversial issue. Is there any way to tell if one's tissues are compromised pre-op or what about post op. I do understand that having a BAV and a dilated aortic root are signs that the tissue may be compromised but how can I know for sure (or can't I). Also, my first surgeon said my aortic root was between 4 and 4.3 and today I was told it was 5.0...two different surgeons but from the same echo?? Is it normal to have this large of a variance. Maybe it doesn't matter as they both want to replace the root as well. Dr. Hockmuth told me I was an excellent candidate for the Ross and really didn't list any red flags at all. He said my pulmonary valve has a trace of insuficiency, but that this was "normal." He reports he has had two bi-cuspid pulmonary valves, which lead to plan B (for me this would be a mechanical...not sure btw the St. Judes and On-x). I'm not sure what to make of all of this.

Thanks again,

Thomas

 

[Thomas]

Follow-up questions 29yo BAV

Follow-up questions 29yo BAV

Thank you all so much for your responses. They have been very helpful in my quest to make the best decision for me and my family. I met with Dr. Hockmuth (Des Moines, Ia Surgeon who has performed 150 Ross') today. He told me he didn't think the underlying connective tissue disorder would be an issue for me as he didn't seem to really believe that it was much of a factor. This seems to be a rather controversial issue. Is there any way to tell if one's tissues are compromised pre-op or what about post op. I do understand that having a BAV and a dilated aortic root are signs that the tissue may be compromised but how can I know for sure (or can't I). Also, my first surgeon said my aortic root was between 4 and 4.3 and today I was told it was 5.0...two different surgeons but from the same echo?? Is it normal to have this large of a variance. Maybe it doesn't matter as they both want to replace the root as well. Dr. Hockmuth told me I was an excellent candidate for the Ross and really didn't list any red flags at all. He said my pulmonary valve has a trace of insuficiency, but that this was "normal." He reports he has had two bi-cuspid pulmonary valves, which lead to plan B (for me this would be a mechanical...not sure btw the St. Judes and On-x). I'm not sure what to make of all of this.

Thanks again,

Thomas

 

[ALCapshaw2]

Thomas,

You may want to get a second opinion from one of the leading Ross Procedure Surgeons*.

You could contact their offices and see if they would be willing to review your tapes and test reports, either at no charge or some nominal fee without actually requiring an office visit.

*
Dr. Paul Stelzer in NY
Dr. William Ryan in Dallas, TX