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Bradley White

Well-known member
Joined
Apr 22, 2006
Messages
178
Location
South Bend, IN
Hi Again All,

As some of you may remember I need a second heart surgery to repair an aortic root aneurysm and leaky neo-aortic valve following a Ross Procedure performed a little over six years ago. Dr. Dearani, a surgeon at the Mayo Clinic, recommended a mechanical valve and root replacement.

Recently, I got a second opinion from Dr. Pettersson at the Cleveland Clinic. His first instinct is to go with a mechanical valve, although he says a homograft of root and valve is an option. He, like the surgeon at Mayo, feels that my pulmonary homograft is functioning quite well and sees no reason to replace it. Although he told me that in some recent Ross Re-ops he has taken the pulmonary valve that was moved to the aoritc position and put it back into the pulmonary position from whence it originally came. Thus, the pulmonary valve is back in its original state with all its original parts and the patient is theoretically no longer a two valve patient. Kind of neat, but he says that I am not a good candidate because one of the cusps of my neo-aortic valve appears to have greater prolapse than the other two, meaning that it may not just be a root dilation issue, but also a valve issue causing the regurgitation.

Based on these recommendations I am leaning strongly towards AVR with a mechanical valve. Although the homograft option is intriguing I remember Dearani telling me he didn't think it was a good idea, but I honestly can't remember why...maybe I will call him

So I have scheduled my surgery for December 7th at the Mayo Clinic with Dr. Dearani. I guess I am only leaning towards Dearani over Petterrson, because I was never able to meet Dr. Pettersson face to face...something about someone cracking open my chest that I have never met before that makes me a little uneasy. But at the same time I have heard about quite a few bad experiences from people on here at the Mayo Clinic, so I am worried about that. Also, I am absolutely, almost irrationally so, terrified of being on coumadin the rest of my life. I know everyone on here says it is no big deal, but the though of it, for the rest of my life, is really, really scary. And I am really second guessing myself and starting to think a third heart surgery (guaranteed if I get a homograft) is better than having to be on anti-coag the rest of my life. So many doubts!

Brad
 
Brad - I too am a little "hinky" about having someone open me up that I've never seen face to face. But it is done. I just don't like the feeling like it's the same as sending my computer off to a faceless tech to fix.

Coumadin get much too bad a rap in my opinion. I've been on it for 15 years and it's allowed me to live a very full, OHS-free life so far. Take a look at this thread. http://valvereplacement.com/forums/showthread.php?t=17116 I really believe that the worst part about being on Coumadin is the fact that there's still a lot of people in the medical community that are scared to death of it because they don't bother to bring their knowledge into the 21st century. Much like heart surgery itself has changed in the last 20 years, so has the management of Coumadin.

Even this site, if you read the anti-coagulation forum, gives a distored view of the "difficulty" in taking Coumadin. People post when they have problems, they don't post when it is going well. So it makes it seem like there's a lot of problems, when in actuality, most of us have little or no problems being on it.

I'm guessing that the surgeons are leaning towards a mechanical because you are young and this is already your second surgery. Each surgery gets more difficult because of scar tissue and wear and tear on the heart.

Best wishes.

PS - if I recall, Mayo is highly supportive of home INR testing. Speak to your surgeon about this and tell him/her that if you go with a mechanical you'd be interested in home testing your INR.
 
Exploring Further

Exploring Further

I am not sure how pressing your need for surgery is, but if you have time, you might look at your options further.

Did anyone mention to you the concerns about aortic homograft removal once it calcifies? I have heard the root/aorta portion of the homograft described as turning as hard as a "lead pipe" and the removal becoming difficult. I have also heard that it was favored at one time in younger people, until surgeons found out what it is like to try and take it out later. If the life of an aortic homograft exceeds the person's life span, that is not a concern, such as in the elderly.

You might research a tissue valve that is not a homograft to see what this option might mean in your situation.

I am thinking of a young woman whose BAV failed when she was probably college age. In a few short years, she first has had a homograft, followed by a Ross procedure which failed and jeopardized her life as her aorta ballooned to a huge size. She now has a bovine pericardial valve. Yes, she will need another surgery some day.

Even with what is intended to be the most durable options, the valve(s) and aorta need to be followed carefully for a lifetime.

Perhaps this link might help

www.cedars-sinai.edu/aorta

as well as some of the Medical References under

www.bicuspidfoundation.com


You have my very best wishes,
Arlyss
 
Hi Arlyss,

Both doctors at the CC and Mayo told me that a pericardial valve was not an option because they don't come with root graft that I need and that neither of them would last very long in someone as young as me anyway. I trust both of these surgeons opinions.

So I am almost certain that I am doing a mechanical valve, I guess i am just having some second thoughts, which is probably to be expected. Just looking for some reassurance, I need to put these doubts behind me and enjoy this last month before in the hospital

Brad
 
Just wanted to mention Joe's situation. It may not be the norm, but it happens enough so it is not unusual. Joe has had three valve surgeries. Strangely enough he has mechanical valves, so nothing is quaranteed with any of this. He has an aortic and mitral and had a repair on the mitral for a leak around the sewing cuff, (could be from his own particular tissue problems, don't know).

He is now deemed inoperable by more than one surgeon, and he was denied even a TEE this last hospitalization because they did not want to tempt fate.

He has too much scar tissue, and even has restrictive/constrictive heart disease ostensibly from it.

The heart is not a large organ, which is good to keep in mind.

Granted he is 75 years old. But that is what can happen with many heart surgeries as you age. His first valve surgery was when he was in his mid forties.

In spite of it all, he has lived a very charmed life.
 
Thanks for that story Nancy. It is an excellent point and one that my surgeons told me. Each re-op becomes more and more difficult due to the scarring, etc...Having many surgeries is definitely not something I want and is indeed why I have decided to go with the mechanical valve -- reduces the risk of future surgeries.
 
You have a very difficult decidsion to make. At your age, there's a good chance that a single mechanical won't take you all the way. There are too many options still open for your heart.

I have to agree that even the bovine pericardial valve is unlikely to last terribly long at your age.

Some things to look at...

St. Jude has a tissue valve that is not available in the United States. It's mixed grille (part porcine, part bovine). There are claims that it allows the person's tissue to grow into it and take it over, an approach that was tried in a different way some time ago with only minor success. I don't know if it's true, but the valve has been out there a while. You might be able to get it in Canada, if you become convinced that it's an answer, or India, where some people fly to get American-trained surgeons to do valve replacements inexpensively.

Or Sweden, for the new valve they are trying out: http://www.valvereplacement.com/forums/showthread.php?t=18439 That may be tough to get into, and it has zero track record - not even a name.

The On-X carbon (mechanical) valve. You will certainly be here long enough that if the clinical trials pan out, you could benefit from the reduced anticoagulation requirements, or possibly go on aspirin or some other less lifestyle-intrusive ACT prescription.

It depends on your level of desire to stay ACT free, and your willingness to take a calculated, but quite genuine risk to accomplish that.

Best wishes,
 
Oh, I forgot to mention that Joe's first mechanical valve, a Bjork-Shiley aortic mechanical is still in place and working well, last time they checked. It is just turning 29 years old. And the newer ones are even better.
 
Well, Brad...................

Well, Brad...................

your ears must have been burning. I just mentioned you in another thread yesterday. There is a thread running about needing a pulmonary valve replaced. The poster, Kirstie, has a similar situation to yours. Ross procedure performed in 2000 and now needs her PV replaced. She was looking for someone who is or has been in a similar situation. I don't know if she has checked back in or not, but she would probably love to hear from you.

On a happier note, I am glad that you checked in to let us know you have made your decision and have booked a date. It does sound like you have some pre-op doubts and jitters, but you would have to be crazy not to. I wouldn't be thrilled about going on coumadin either. I'm not happy that Katie is on it, but I have to confess that it has not been nearly as bad as I thought it would be. (Go read about Mkayak's chopping part of his thumb off in the anticoag forum). We have had our share of noggin knockings, but they didn't slow Katie down for long (slowed Mom way down, though - I age five years each time..........sigh! :D ).

Do keep us posted as you know us momma hens tend to worry. Many hugs. J.
 
Biological Bentall

Biological Bentall

Just in case it might help someone, there is something called a biological Bentall. For those who must have aortic root replacement and are not considered candidates for coumadin, there is a surgical technique called the biological Bentall. The surgeons who perform this surgery must make the composite valve-Dacron graft right during surgery - they sew the valve into the Dacron graft at that time. (I am guessing that in the "early days" pioneering surgeons would have had to do this with mechanical valves also, assuming that it took some time before vendors began to make mechanical valve-Dacron graft units.) I couldn't find a published paper that I could list here as a reference, but it was discussed at the Aortic Surgery Symposium in 2004. It was presented by a surgeon from Mt. Sinai in New York, and described 141 people who had a Bio Bentall done. I found the age range of interest - from 34 to 88 years of age.

The decisions about all this must be very individual for each patient and their surgeon, but in case anyone should find that their root must be fully replaced and for whatever reason a mechanical valve along with anticoagulation is not a solution for them, it is helpful to know that there are instances where a biological valve has been used with a Dacron graft while replacing the entire root.

Bradley, it is a very good day when a bulging aorta and leaking valve are taken care of , and your surgery day will be just that - a very good day that will be followed by even better ones!

With wishes for all good things for you,
Arlyss
 
I feel happy for people making valve choices these days because there are so many options. However, I feel badly for people making valve choices these days because there are so many options.;) :D ;)

Back in 1980, when I had my first OHS, there just were not many options. Tissue valves, at the time, were lasting maybe 5 years and just weren't considered reasonable alternatives in a 28 year-old (my age at the time). In addition, surgeons were still God and you just left things in their hands. Mine went in arrogantly convinced he could repair the valve. I woke up ticking.

I didn't have to worry about a life on coumadin because I just didn't know about it ahead of time. It just became another pill to take because I had a mechanical valve and wanted to live.

I am happy that I didn't have to worry about the choices or concerns people have today. Maybe my head is buried but my situation seems so much easier in retrospect.

Bradley - I wish you all the best. Coumadin gets a bad rap and, although there are a few things to occasionally hassle with while on it, mostly it really is just another pill to take. Home testing has made it a breeze for me and this forum helps me with anything that might come up.
 
Brad,
Having a mechanical valve and composite Dacron graft is your best option in my opinion. And coumadin is not such a big thing really. I've had mechanical and graft for the past 3 years, and although I am older than you, I think this option represents the one option that will lengthen your life considerably AND give you a good quality of life with manageable risks.
Best,
MrP
 
Ascending Aorta

Ascending Aorta

For Bradley and whoever else might benefit, I wanted to mention the ascending aorta. Reading his profile, Bradley was born with a bicuspid aortic valve, which has implications for not just the aortic valve and root (which in Bradley's case were first replaced by his own pulmonary valve/root, now also needing to be replaced) but also for the ascending aorta.

It is important to have the surgeon explain the entire surgical approach that is planned. Focus on the failed valve/root is understandable, but if the entire ascending aorta is not dealt with, it has the potential to force another surgery at some point. If a major reason for a mechanical valve/coumadin is to avoid additional surgery, then it would be unfortunate to undergo surgery again anyway because some portion of the ascending aorta was left behind and develops an aneurysm.

I cannot emphasize enough that no matter what option anyone chooses, they must be followed carefully their entire life. This is what the 2006 ACC/AHA guidelines for valve patients say, and with good reason. With my husband's first valve replacement, we were told great things about the durability/longevity of the mechanical valve. It was with good intent, but the reality has been quite different.

Regarding the bio Bentall and those who have it, I can speculate that some younger individuals may be women wishing to become pregnant - and the older individuals are probably viewed as high risk for bleeding in the brain. No doubt there are other reasons also.

Best wishes,
Arlyss
 
I do not envy your decision. However, just to add my 2cents....

You seem to have set your mind on a mechanical valve (which I would do as well). The reality of a mechanical is that it requires anticoagulation therapy. Taking Coumadin is something serious that deserves serious consideration - however, thankfully it is around to make that mechanical valve a possibility. When I was planning AVR with a mechanical - many people in my life were really freaked about the Coumadin. In my opinion, this site calmed my fears. It is reassuring to me to know that the person that has taken Coumadin for the longest - posts on this site. People far knowledgable than I post here and are living happy, clot-free, second chance lives because of Coumadin.

My advice is - now that your gut has pointed you toward a mechanical valve - you should research everything there is to know about taking Coumadin. As everyone has said - medical professionals often lack understanding. The best way to keep yourself safe - is to be your own advocate - and learn all you can. Then, take a deep breath - say a heartfelt prayer - and so what God says!!

Best of luck to you - truly!
God Bless!!
 
Hi Brad. No opinion, here, about the valve or procedure.....I just earnestly want to wish you well. You are a bright and dedicated young man and you have taken the time to thoroughly research you choices. When you do decide, live that decision with conviction and without remorse. No one has guarantees. Mostly, it seems, we have luck.....or not. It's your turn to be lucky!! Keep a positive outlook and a level head. You are working to make a difference in the world, and the world needs bright young minds such as yours. Be confident.

Best of luck. Hope you can line up someone to report to us on your initial progress on the 7th. We'll certainly have you in our thoughts.

:) Marguerite
 
To follow up on Arlyss' excellent point concerning the ascending aorta and avoiding another surgery, one may also want to inquire about resection and replacement of ascending aorta AND lesser curvature of the transverse aortic arch using a beveled hemi-arch technique. Note this entails deep hypothermia and circulatory arrest. The concept of this technique is to avoid another surgery in the future due to aneurysmal dilation of the ascending aorta extending into the lesser curvature of the transverse aortic arch (prior to the innominate artery).
 
Ascending Aorta & Hemi Arch

Ascending Aorta & Hemi Arch

Just to add that removal of the entire ascending aorta requires total circulatory arrest under deep hypthermia, even if surgery does not extend under the arch. The blood flow has to stop during this brief period while the aorta is "open" - there is no clamp on it, because the ascending aortic tissue has been completely removed - there is no place to clamp!

And to add to Mr. P's mention of the arch, when the aneurysmal tissue extends into the bottom side of the arch, the Dacron graft is tailored to extend underneath the arch to replace the "bad" aortic tissue there also - all happening during the period of arrested blood flow under very cold conditions! My husband is one of those who has a "tongue" of Dacron graft extending under his arch.

Best wishes,
Arlyss
 
Hi there. I dont have anything to offer about the valves that hasnt already been said, but please know that they are doing great things at the Mayo and I felt my care there was FIRST CLASS!! I had a problem afterward with pericarditis and they could not have been more caring or helpful. The nursing care there is OUTSTANDING(and that is coming from a nurse). Please know that you are in good hands there. Good luck to you as you face this surgery. You will do great, I just know it! Karen
 
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