New to the forum

[emc07]

Hi everyone!

It's nice to see a place that people can talk frank about this issue. I have been reading these posts for a few days now. I thought I would introduce myself and see what your thoughts were.

I have my OHS scheduled for August 28th. I am having either the Ross Procedure or a Medtronic Freestyle valve put in. I am not going mechanical because I am 31 and want the best chance to have kids. I know that I will need another surgery with the Freestyle, but with the Ross my cardio said I have a 50% chance of not having a surgery again, if all goes well. She is hesitant to do the Ross because my aortic valve area has stretched. which means they would have to stretch out my pulmonary valve, and there's a chance for both the aortic and pulmonary to have AR but, the idea of maybe not having to have surgery although unlikely is still there...

I just wanted to see what you guys thought. I have not made a decision yet.

Erica

"Dreams come true, not free."

 

[ALCapshaw2]

My first question would be "How many Ross Procedures has your Surgeon done and what are his (her?) results?"

To my mind, the RP is one of those procedures where you want a "Best of the Best" kind of Surgeon with a National Reputation for the RP.

Dr. William Ryan in Dallas and Dr. Paul Stelzer at Beth Israel Hospital in NYC come to mind as perhaps the most prolyfic RP surgeons in the country. See the profile (and posts) from StretchL who wrote extensively on his RP and even did a Photo Journal (see http://stretchphotography.com/avr)

Bottom Line: Find a surgeon who has done a LOT of RP's with Good Long Term Results.

'AL Capshaw'

 

[Bryan B]

Hi Erica,

The Ross Procedure is a very promising option to those who would like the best of both worlds...not having to take anticoagulants and the possibility of 20+ years (and possibly a lifetime) without reoperation. The thing about the Ross Procedure is that once you have it you have basically become a "two valve" patient. In other words you have two valves that could potentially need replacing instead of one. My surgeon said that even though I appeared to be a perfect candidate for the RP (no bicuspid valve, no aneurysms or other connective tissue disorders, and no pulmonary disorders) he would only proceed with the RP if my pulmonary valve was indeed healthy and a perfect fit in the aortic position. Luckily everything fit perfectly and after the surgery he said I was the perfect candidate for the RP. It worries me that the surgeon feels that they would have to manipulate the pulmonary valve in order to make it fit in the aortic position. While the pulmonary valve is virtually indentical in size to the aortic valve, it's purpose is to open and close to allow blood to flow through it as the heart beats. It doesn't experience the pressure that the aortic valve experiences as it actually pumps blood through the aorta to the rest of the body. That's why my surgeon said it was very important that the pulmonary valve was in perfect condition and a perfect fit in the aortic position since it would have to hold up to the added pressures of pumping blood to the body and not just opening and closing to regulate blood flow.

I understand your desire to have what may be a long term and possibly a permanent solution for your valve problem, but like Al said, you really need a very experienced Ross Procedure surgeon to make the call on whether or not you are a good candidate for the procedure. And even if they think that you are, it is not uncommon for them to change their mind once they get a good look at your valves during surgery, so you would still need to make a decision on a backup valve in case the surgeon decided not to procede with the RP. If you are planning on having children the RP makes a lot of sense, but you may have to accept that you are not a good candidate for the surgery. If this turns out to be the case than I think your choice to use a tissue valve is a wise choice during the time you plan on having children. A tissue valve will probably not last more than about 10 years in someone your age, so if you go tissue you will need to "get busy" with the having children thing.

 

[Curtsmum]

Hi Erica, just wanted to say welcome. Sorry i can't answers your questions goodluck with your decision and best wishes.

 

[Phyllis]

Welcome, Erica. I am glad you found us before surgery and while you are making these important decisions. I put you on the calendar and we look forward to helping in any way we can.

 

[WayneGM]

Welcome to the VR community. Sorry for the circumstances, but I'm glad you found us. I'll let others provide their insights and advice on the Ross Procedure or Medtronic valve as I've no experience with either. Best wishes and good luck.

 

[Mary]

Hi Erica.
Welcome to the club!
If your surgeon is hesitant to perform the Ross, then I don't think you should consider having her do it. Perhaps you are not a good candidate, perhaps you are, but you need a surgeon who is confident going in that it will be successful.
I researched having the Ross, and actually had a tentative date with Dr. Stelzer when circumstances intervened, and I had a Edwards implanted instead. I am certain I will need another one implanted sometime in the future, but I'm ok with that.
Good luck and please keep us informed along the way.

 

[emc07]

Thank you all for the great comments, advice and encouragement. It is nice to welcomed by so many people!

The surgeon I have is a good one, Dr. Jennifer Hirsch. She is young, but has experience with Ross's and valve replacements, many of them. She is at the University of Michigan, which I know has a great reputation for congenital heart issues. She has studied under some great surgeons who have performed many Ross's as has she in the thirteen years she has been there. I have no doubt if she does it I will be ok, I'm just not sure about having 2 valves to worry about... I'm also not sure if she would even give me the option if it were not a good idea? She did say there was no wrong answer...

I don't know. This is really confusing. Don't you just wish there was one and it lasted your whole life

Thanks again for your concern and comments!

Erica

 

[Ross]

Don't you just wish there was one and it lasted your whole life
Erica

Yes, specifically our native valves.

 

[Karlynn]

Welcome Erica!

I don't believe we've had anyone here who has had a Ross and gone on to bear children. I'm not saying it's not done, but you may want to make sure it's just as "do-able" as with a tissue valve.

While we have had women here who have gone on to bear children with mechanical valves, I think you are taking the path of least resistance and it's what I would recommend to my daughter.

Best wishes!

 

[Bryan B]

Karlynn,

I did a google search on "ross procedure" and "childbearing" and came up with so many articles stating that women of childbearing age were prime candidates for the RP that I didn't bother to copy a bunch of links to them. It didn't discount the fact that tissue valves or homografts would work just as well for women of childbearing age, only that the odds were statistically much higher that the RP would be much more durable considering that most women of childbearing age would be young enough that a tissue valve would only last around 10 years. They also went on to describe the procedure and list certain medical conditions that would preclude a patient from getting the RP. But most if not all of the articles listed pros and cons to the RP, and the freedom from needing anticoagulants during pregnancy in one of the major pros they listed (along with the autograft growing with a child).

It seems that most of us on this site that have had RP's have been males, so the fact that no female on this site that has had a RP has borne children is insignificant when considering the merits of performing the RP on women who are considering having children.

 

[Leah]

Bear in mind...

Bear in mind...

Hi Erica,

The Ross Procedure is a very promising option to those who would like the best of both worlds...not having to take anticoagulants and the possibility of 20+ years (and possibly a lifetime) without reoperation. The thing about the Ross Procedure is that once you have it you have basically become a "two valve" patient.

Bear in mind that the Ross procedure is a more invasive, "bigger" operation and doesn't offer a guarantee or even near-guarantee of avoiding re-operation, which is supposed to be the big plus. It has its own substantial risks of failure, which seems to put it back in the same category as tissue valve (in that you avoid coumadin but still have a substantial risk of another OHS) but with more complexity and more things that can go wrong. I started out quite actively interested in exploring Ross, but when I understood that it just offers a "chance" of avoiding re-op and has its own enhanced set of risks and potential failures, I changed my mind radically. I'm 57, past child-bearing age, but am seriously considering a tissue valve, despite the risk of re-op, because of the anticoagulation issues with mechanical valves. Many younger women opt for pig valve or bovine valves if they want to get pregnant.

 

[JCSydney]

Hi Erica and welcome. I just wanted to wish you all our best wishes.

Jeff.

 

[Superbob]

Hi Erica,

I am no expert, but I got a Medtronics Freestyle at age 63 and have been pleased with the results so far. I wish you the best in your process of decision-making and beyond.

 

[A New Beginning]

I wish you the best with your surgery in august.

I am having surgery in less than two weeks. Mechanical Valve being put in. I had the pig valve put in so that i could have children. I was able to have one and now it is time for the permanent valve. my nerves are on end, but I know I will be ok just like you will be. Good luck.

******************************
ps. that is cool you live in k-zoo, I use to go to Western out there

 

[Bryan B]

Bear in mind that the Ross procedure is a more invasive, "bigger" operation and doesn't offer a guarantee or even near-guarantee of avoiding re-operation, which is supposed to be the big plus. It has its own substantial risks of failure, which seems to put it back in the same category as tissue valve (in that you avoid coumadin but still have a substantial risk of another OHS) but with more complexity and more things that can go wrong. I started out quite actively interested in exploring Ross, but when I understood that it just offers a "chance" of avoiding re-op and has its own enhanced set of risks and potential failures, I changed my mind radically. I'm 57, past child-bearing age, but am seriously considering a tissue valve, despite the risk of re-op, because of the anticoagulation issues with mechanical valves. Many younger women opt for pig valve or bovine valves if they want to get pregnant.

Leah,

I think you are mistaken that surgeons that offer the Ross Procedure to a patient tell their patients that there is "a guarantee or even near-guarantee of avoiding re-operation". The Ross Procedure has been around long enough now to provide some pretty reliable stats as does tissue valves and mechanical valves. And all three types of valve replacement has been refined and improved over the years. You are right that the Ross Procedure is a more technically difficult procedure. I guess that's why myself and Al suggested that she seek out the most experienced RP surgeon possible. I also mentioned that the RP is not recommended for patients with possible connective tissue disorders. And I am not trying to talk emc07 or anyone else into selecting the Ross Procedure over other procedures. My reason for responding was to share my experience and the information I learned before and after having the RP surgery.

I would appreciate it if you could actually back up the statement I bolded in blue with some facts. IMO the RP is not "more invasive" but it is more complex. Once you've had your sternum sawed in half and the surgeon has cut into your heart I really don't see how it can get more invasive than that. If by "bigger surgery" you mean more complex then you are correct. That's why anyone who is considering a RP should try to find the most experienced RP surgeon possible. The RP does have a risk of failure (as does tissue and mechanical valve replacements), but to call that risk "substantial" is misleading. Both the autograft and homograft valve in RP patients have a freedom from reoperation percentage around 80% at 20 years. It may even be better now since they have improved the technique in the last decade (which includes replacing the aortic valve AND root with the pulmonary valve AND root and using a pulmonary homograft instead of an aortic homograft in the pulmonary position).

I'm not trying to get in your face or talk anyone into the RP...I've already voiced my concern that emc07's surgeon felt she might have to manipulate the pulmonary autograft to make it fit. The main reason for my last two posts is to clarify the FACTS about the RP and dispell any incorrect assumptions that someone may state that has not had a Ross Procedure, or for that matter any type of valve replacement. I guess what I am asking is that members who share their opinion be careful not to let their post come across as though it is a factual statement. My concern is that a new member tends to be vunerable to reading a post that a member has written as though it is a fact when in reality it is either an opinion or worse...just plain not true.

Now I know how you members feel when trying to dispell misinformation about Coumadin and anticoagulation therapy.

 

[Cooker]

Welcome to the Zoo....glad you found us

 

[Leah]

I think you are mistaken that surgeons that offer the Ross Procedure to a patient tell their patients that there is "a guarantee or even near-guarantee of avoiding re-operation".

I agree with you. I was pointing out that there's no guarantee; I wasn't saying that surgeons say otherwise. I have no opinion (especially since I'm not a doctor and am not the person making this decision) about whether any particular person should have the procedure. I was trying to point toward questions that are worth raising before making the decision. For many people, the beauty of doing Ross would be the hope that it wouldn't have to be repeated, so it's important to get a fix on how likely that is (and what odds you, personally, feel are ok).

And I am not trying to talk emc07 or anyone else into selecting the Ross Procedure over other procedures. My reason for responding was to share my experience and the information I learned before and after having the RP surgery.

Understood. I would not have suggested you were doing anything other than sharing experience and info. You were raising important issues and providing important info. I was raising additional questions for exploration.

I would appreciate it if you could actually back up the statement I bolded in blue with some facts. IMO the RP is not "more invasive" but it is more complex.

If I'm wrong about that, I apologize. I can't cite you medical references. This was my understanding in talking about Ross with several very well respected surgeons, including one who does substantial numbers of Rosses. They may have meant the obvious, that replacing two valves in a human body is by definition a more invasive thing than replacing one valve, since it creates risks for the valve that wasn't diseased as well as for the one that was diseased. (To me this seems correct, and perhaps our difference is semantic.) However, this does emphasize that we are lay people and we help one another primarily by raising questions that the medical experts can better answer.

To elaborate a little further, my understanding of this forum is that it's on ongoing conversation among people who are trying to add to one another's knowledge. I would never knowingly say something that I knew to be wrong and I try to be careful about what I'm asserting - but even if I think what I'm saying is correct, I have to assume that the person I'm saying it to is going to use is as a basis for further exploration, not take it as medical fact.

Once you've had your sternum sawed in half and the surgeon has cut into your heart I really don't see how it can get more invasive than that.

Again, I think the surgeons who spoke with me about it felt that having a healthy valve removed and replaced is by definition invasive, carries its own risks, and is a big deal - but I don't think it's necessary to argue about the definition of invasive.

The RP does have a risk of failure (as does tissue and mechanical valve replacements), but to call that risk "substantial" is misleading. Both the autograft and homograft valve in RP patients have a freedom from reoperation percentage around 80% at 20 years.

For me, a 20% risk of failure for each valve would be substantial, but the person having the operation has to make the decision.

The main reason for my last two posts is to clarify the FACTS about the RP and dispell any incorrect assumptions that someone may state that has not had a Ross Procedure, or for that matter any type of valve replacement. I guess what I am asking is that members who share their opinion be careful not to let their post come across as though it is a factual statement.

I agree with all of this. Your posts were valuable and I wasn't denigrating them in any way. And I really have no opinion about whether emc07 or any other member should have a Ross. Just trying to point to some of the additional issues that are worth inquiring about.

 

[emc07]

I wish you the best with your surgery in august.

I am having surgery in less than two weeks. Mechanical Valve being put in. I had the pig valve put in so that i could have children. I was able to have one and now it is time for the permanent valve. my nerves are on end, but I know I will be ok just like you will be. Good luck.

******************************
ps. that is cool you live in k-zoo, I use to go to Western out there

Thank you for the good wishes. I to wish you the best. We will be fine. It's still scary isn't it... really Western, yeah that's right down th street. I'm a Central grad myself... lol. Good Luck!

 

[emc07]

Decision is made

Decision is made

Hi Everyone,
I just wanted to let you all know that I will not be getting the Ross Procedure. My Cardio ran it by 2 great Dr.'s one being Dr. Bove at U of M and they all 3 said they would recommend a tissue valve instead of the Ross. I am releived that I have my decision, but bummed that I will have to have a 3rd operation in 10 years or so. Oh well... that's life Thank you for all the encouragement and comments.

~Erica


"Dreams come true, not free."