50 Year Old Male In Need If Bicuspid Aortic Valve Replacement

[markwel]

I just recently found out I need my bicuspid aortic valve replaced. I'm still in shock over this. I've never been in the hospital in my life for anything. I went in for a routine physical and after an ekg the physician suggested I have a stress test. After the Myoview stress test he found my heart was enlarged and that I needed a heart cath to determine what was going on. The cardiologist found that my aortic valve was causing "regurgitation back into my heart. He said I had a very "leaky" valve and would need open heart surgery. I ask what would cause the valve to leak. After he did a TEE he told me I was born with a bicuspid aortic valve. He said I had severe regurgitation.
He talked with me briefly about the Ross Procedure and about other types of valves available.

I spoke with a surgeon briefly this week about valve replacement. This particular surgeon does not do the Ross procedure. He wants to do a mechanical valve which would require I take blood thinning drugs the rest of my life. I want to explore all my options first.

Knowing what you know now...what would be your advise to me? I have an enlarged aorta. The surgeon said it was 4.3? Not large enough to need replacement. How would this affect the Ross procedure as far as fitting my pulmonary valve to the enlarged aorta? I have no other heart conditions..ie, blockages, etc. I'm not diabetic, don't smoke....have been walking 3 miles a day for months. I AM overweight. 5'9'' tall and 250lbs. I don't have any symptoms from the valve condition...no shortness of breath, etc. The idea of the potential clicking from the mecahnical valve and the anticoagulant drugs for life concerns me. I am interested however in the Ross procedure.

I am speaking with a surgeon that does the Ross procedure in Lexington, Ky on Tuesday. Dr. Robert Salley. What questions should I be asking him. I understand he has done close to 150 Ross procedures.

I am so thankful to have found this site and look forward to any help. I am very scared.

 

[geebee]

I want to welcome you to the site - you will find all the help you need here. Unfortunately I cannot address the Ross procedure since I am a mitral valve patient but there are many, many members who have had it so I am sure you will hear from them.
I have been on coumadin for 24 years and it really doesn't affect my lifestyle other than dealing with my clumsiness (getting worse as I get older). I think the Ross procedure is great since it does offer an alternative that can avoid future surgeries. However, if the Ross procedure would not work for you, I would not hesitate to suggest a mechanical to avoid future OHS.
Good luck and smiles,
Gina

 

[Karlynn]

Welcome to our family. We are so glad you found us, because the more you read here, the less fear you will feel. Everyone feels some amount of fear, no matter how informed they are. But knowledge is power.

Your age puts you in a pretty gray area as far as valve choice. I think you are doing the right thing by looking into the Ross Procedure for your first choice. After that, it becomes pretty much a toss up between tissue and mechanical.

We have lots and lots of people here who live a life with Coumadin and find it very manageable. It truly is a trade-off scenario in most cases. At 50 you are most likely guaranteed another surgery with a tissue valve. A mechanical valve doesn't take away completely the possibility of a second surgery, but it does give you better odds. I'm on year 13 on my mechanical.

I just encourage you to do lots of reading here. Use the Search option and start plugging in words. Don't hesitate to ask questions.

Best Wishes!

 

[tommy]

Mark,

You have come to a great place for information and support. I'm so sorry that this is happening to you. It is okay and natural to be scared. Please know that there are over 1000 of us that have been through this. You will do fine.

Obviously, they didn't wheel you right into the OR, so it sounds like you have some time to do the research that you already seem inclined to do. That is good.

I chose the mechanical valvbe because I prefered Coumadin to repeat surgery. The clicking doesn't bother me at all. If I had to do it over again, I would decide the same. I'm not pushing that on you by any means. Lots of others chose tissue valves and Ross procedures and would do the same again.

I don't fully understand the enlarged aorta information. I do know that the valves come in different sizes. Mine is 29 mm.

The questions come quickly. Write them down and bring them with you to the surgeon. You don't mention family. I found it helpful for my wife to join me with cardio and surgeon visits. She helped me remember stuff that was said, and gave me a shoulder to lean on. Also, you will need some help recovering at home.

Wishing you all the best. Feel free to continue to share those feelings and questions.

Others will come along and help you out some more.

 

[Bryan B]

Welcome Mark,

I'm 44 and had a Ross Procedure in March (was 43 at the time), but I didn't have a two flapper or enlarged aorta. I do think that would have to be taken into consideration. I do know that in a lot of cases they will take the pulmonary valve AND root to replace the aortic valve AND root when doing the Ross, so that may be how they compensate for an enlarged aorta. Hopefully some more members will come along that know more about how a biscuspid valve and/or an enlarged aorta may affect the Ross Procedure.

It's always a shock when you hear the words "Open Heart Surgery". I have known my whole life that I would probably need it one day, but it still was difficult to wrap my mind around it once it became time. You have found a wonderful site to help you through the whole process...gald you found us.

 

[Marguerite53]

Welcome

Welcome

You've already made a marvelous choice in joining this family!! I'm 50, too, and have been told I will have an aortic valve replacement sometime in the next 2 years.

Many of my quesitons and concerns have been addressed here. I am not scared. I am actually very impatient to get on with it! Use the search engine here. You will come up with so many knowledgeable answers to questions you haven't even thought of yet! Follow the links. There is so much you can learn here.

Good luck and keep posting with questions.

Marguerite

 

[dcpickle]

OK, here's the deal as I see it: A mechanical valve gives you the best odds for no repeat surgery, but no guarantees. In fact, the 2 people I have personally known who had mechanical valves both needed repeat surgeries. A tissue valve RARELY requires coumadin, but I understand that some people have some problems with a-fib or something and need coumadin, regardless of their valve type. So, there's no guarantees of anything.

I saw the Ross Procedure as the best option in this big game of odds. No coumadin required (unless I had a-fib problems) but with the reasonable hope of no repeat surgery. (I'm 42) So, I had a Ross just 6 weeks ago. No problems with it so far!

Many people here have said that they wanted the absolute best chance of no repeat surgery, hence they chose a mechanical. This is not an unreasonable position. Surgery was not fun. But, I relish the fact that I don't have to worry about having a stroke while off of coumadin for some medical procedure. I love the idea of freedom from meds. I'm looking forward to getting off the ones I'm on. Coumadin just seemed like a ball-and-chain to me. Of course, many, many people on coumadin say that it's not a problem for them. They eat what they want, don't worry about bleeding, they just have to get used to getting stuck regularly to check their INR, and it becomes a normal part of life for them. So I'm sure I could have lived with it.

It all comes down to you making an informed decision based on the factors you feel most strongly about.

Spend some time looking at some past threads and you'll learn alot. You're scared, and that's very normal. For many of us it happened just like it has for you. We thought we were healthy, but then BAM! we find out we have a defective heart valve and need surgery. It's quite a shock, but folks here are great and will support you all the way.

By the way, your bicuspid aortic valve is the most common valve problem. Many, many of the people here have (or had) that problem. An enlarged aorta often accompanies a BAV. My aorta was not enlarged, however, so I don't know what impact, if any it will have on whether you can have a Ross Procedure. My guess is it won't be a problem.

One more thing: If you do go in for a Ross, be sure you have a "plan B" in case the Ross can't be done.

Since you're intersted in the Ross, here's a few links with Ross Procedure information.

http://www.hsforum.com/stories/storyReader$1469

http://members.cox.net/myrossprocedure/

(My surgeon's web page)
http://www.ps4ross.com/index.shtml

Good Luck and let us know what's happening!

David

 

[PapaHappyStar]

Hi Mark,

I am scheduled for the Ross Procedure in a week, I too have a bicuspid aortic valve as far as they can tell from imaging and have an enlarged ascending aorta on the echo ( 3.6 cm ). This does not contraindicate the Ross procedure as far as I know and there are surgical techniques to "firm up" the aortic tissue for an enlarged aorta, here are a few links you might look into for more detail on the Ross:

http://www.ctsnet.org/doc/2380

http://cardiacsurgery.ctsnetbooks.org/cgi/content/full/2/2003/867#PULMONARY_AUTOGRAFT

I am doing additional reading on the Ross Procedure prior to my final pre-op meeting with the surgeon. I will let you know what I find out.

Regards,
Burair

 

[JimL]

Welcome Mark!
Just a note on the enlarged aorta. Mine was enlarged because my bicuspid aortic valve had narrowed with calcification to the point that it was only allowing a narrow stream of blood through at each beat, which put a lot of pressure on the aorta. When my surgeon put in a mechanical aortic valve, he also put a dacron wrap around my aorta to keep it the right size.

 

[KathyH]

Hi Mark, welcome to VR. It is scary to hear that you have to have OHS. But if you go to an Experienced Surgeon your Risk is only about 2%. I had an anerusym (4.7) repair when I had my AV replaced with a mechanical. Valve choice is a personal issue. No one is wrong, it depends on what is best for you. If I were you, my concern would be what the surgeon thinks about your aorta. Studies have shown that most people with a 2 leaflet AV have to have thier aorta repaired at some point.
Good Luck.
Kathy H

 

[tobagotwo]

It is a terrible shock to suddenly find yourself being set up for major surgery. Especially when you thought your worst response from the doctor would be to just take off a few pounds (and who couldn't?). Many of those who come to this site have suffered the same, sharp realization of personal mortality with the same lack of warning. And those who knew it was coming have endured a different type of stress, associated with the knowing and waiting.

This is a good place to let off steam about it, as there is only so much you expect your family to deal with. People on this site know what you're going through, as we've all been through it, or are going through it along with you.

There has been a lot written about valve choices. My own view was and is similar to what yours seems to be, although there are many valid perspectives.

I personally would not get a mechanical valve in your position. The main point of a mechanical valve is to avoid future surgeries. Your aortic enlargement, while not bad yet, is such that it will likely eventually require surgery itself, if they are not going to do anything with it now. Then you would face surgery again, this time with the added risks of going on and off of anticoagulation, and the handoff to heparin and back to warfarin. Not desirable in my book.

There are lots of excellent surgeons out there. Many of us have opted not to take the first one presented to us, and instead chose one with more experience or who more represented our views of what should happen while we are unconscious. Remember, the surgeon can change his mind while you're under (and some do), install whatever he decides is "best for you," and then explain it to you later, after you're stuck with it.

Certainly, if you seek a Ross Procedure, surgeon choice is absolutely critical, as previous successful Ross experience by the surgeon is the best predictor of success. It sounds like Dr. Salley is in the ballpark for you, and that is good. It sounds like you're already headed in the direction you want to go. There are getting to be a lot of Ross Procedure members now, and they are already adding information for you, with likely more to come.

You will also need to have a "backup plan valve," in case your surgeon finds that the RP surgery will simply not work for your case. It does happen sometimes.

These below are some of my own thoughts and information over time. Obviously, they are all tobagotwo posts. If you page around in the threads these bring you to, you will also find excellent posts from many other site members, often with valid, but differing opinions.

Here are some thoughts about choices:
http://www.valvereplacement.com/forums/showthread.php?p=77609#post77609post77609
http://www.valvereplacement.com/forums/showthread.php?p=95048#post95048post95048

More: http://www.valvereplacement.com/forums/showthread.php?p=86408#post86408post86408

And another about Ross backups: http://www.valvereplacement.com/forums/showthread.php?p=86505#post86505post86505

Here's another, that was aimed at a particular person's issues, but contains some thoughts (Go one post up when you get there):
http://www.valvereplacement.com/forums/showthread.php?p=98272#post98272post98272

And another:
http://www.valvereplacement.com/forums/showthread.php?p=96236#post96236post96236

As you would want to pick a backup valve, if the Ross Procedure is a no-go, here's a link to a post that will give you valve manufacturer's link info (Go two posts down when you get there):
http://www.valvereplacement.com/forums/showthread.php?t=8653

It's not as much (or as complicated to find) as it looks like. I know you would rather spend these holiday weeks some other way than thinking about your valve. Still, if you want to know what your options are, it comes with the territory...

Best wishes,

 

[Arlyss]

Regarding Your Bicuspid Aortic Valve and Your Aortic Aneurysm

Regarding Your Bicuspid Aortic Valve and Your Aortic Aneurysm

I understand what a shock it can be to find out that your have Bicuspid Aortic Valve Disease. You are very typical of someone with this condition. It is so important that you find treatment from a specialist in aortic disease, someone who will focus not just on the valve, but the big picture, including your aorta. Bicuspid Aortic Valve Disease is increasingly being viewed as much more than a valve condition -- as a connective tissue disorder, with variation in its affects. The Ross procedure is not recommended for anyone with the fragile tissue of a connective tissue disorder, which is why it is not recommended for those with Marfan syndrome. The Ross procedure is a complex surgery that addresses only the valve, not the aortic aneurysm which can be a life-threatening condition. Because of all this, it's use in those with a bicuspid aortic valve is increasingly controversial.
If this specific situation (BAV with insufficiency (leakage) and an ascending aortic aneurysm) were in my own chest, I would seek an aortic surgeon skilled in resecting the ascending aorta, as well as dealing with the aortic valve. This would give me safety from aortic tearing or rupture that could suddenly take my life, and would also give me the aortic valve I need. If my own valve could not be acceptably repaired and I did not want a mechanical valve, I would find someone who would give me a tissue valve with a proven track record. That same someone also needs the skill to safely remove not just part but all of my ascending aorta in the same surgery.

Here are some links that may help
http://www.bicuspidfoundation.com
http://www.cedars-sinai.edu/aorta
http://www.slrctsurgery.com/Thoracic aortic aneurysms.htm

Best Wishes

 

[Bryan B]

Sheyla wrote:

Based on your age, you will need a re-operation at some point. And a re-operation on a Ross is a tougher challenge technically than re-operating on a single suture stented tissue valve.

Sheyla,

I don't mind members of this site stating what their personal preference is on valve choice, but I do mind if people make statements as fact without backing it up with proof. I've done my share of research on the Ross Procedure (seeing as I had it done) and I agree that you do replace single valve disease with double valve disease, but I don't believe that there is proof that "you will need a re-operation at some point" on the autograft. The statistics bear out that the odds of needing a re-operation on the autograft after 25 years is less than 20% (and this does not take into consideration the improvements they made to the procedure in the mid to late 90's). As someone with a Ross, I don't consider <20% at 25 years a certainty that I will need re-operation on my autograft. Nor do I consider <20% chance of needing my pulmonary valve replaced at 25 years as a certainty.

http://www.rossregistry.com/_Charting/AGexplant.asp

http://www.rossregistry.com/_Charting/RVOTrepair.asp

I do agree that the Ross Procedure is not for everyone, but please don't try and scare people away from the procedure by making generalized statements that aren't fact.

TY

 

[Bryan B]

Sorry, I have to take exception with this statement as well:

A tissue valves comes with no requirements to take coumadin therapy, likely just an aspirin a day

I had a RP, and my backup choice was the CE pericardial bovine (just so you know I'm not picking on your preference), but there is a certain percentage of patients that choose a tissue valve that must stay on coumadin for chronic a-fib. I don't know what that percentage is (and I'm sure it's fairly low), but there are no gaurantees that someone who chooses a tissue valve will never be required to take coumadin therapy.

These are all things to consider before choosing a valve. I did a lot of research on mechanical, tissue, and RP before making a decision. All three of these choices had pros and cons. The person having the valve replacement needs to research the pros and cons from each option and then choose which one they think they can best live with. There are no WRONG choices...each option extends the life of the person on the receiving end.

Once again...TY.

 

[tobagotwo]

I certainly like tissue valves, but there are some assumptions made here that may bring unnecessary concern for some...

- I have seen studies showing a 2% to 5% risk of thrombosis or a bleeding event for Coumadin users. I don't disagree with those numbers in general. However, they are a gross generalization, and just not accurate for everyone on warfarin. To use those percentages, the larger risk factors should be qualified, to avoid unnecessarily scaring the heck out of the many people on this site who use warfarin daily. These include that the risk is greater for people with other health factors, particularly when conflicting medicines are involved. And the risk also escalates as people age. (Note: the general risk of thrombosis or a bleeding event - for everyone - rises with age, nonvalvers included.) These things unbalance the risk percentages for the mainstream warfarin client, who tends to be younger than the average tissue recipient.

- That less than 1% risk from an aortic reoperation is true at a healthy fifty-something, maybe even a healthy early sixties, but definitely goes up along with your age, and with the other complications that time may bring. The point about not wanting resurgery at eighty is well taken, and one of the reasons why I opted for the Mosaic at the tender age of 51.

- As far as the Ross procedure: with very high probability, the aortic valve replaced by the pulmonary valve is a lifetime fix. And there's no Coumadin risk involved. If there is a resurgery for the pulmonary homograft, it is statistically an easier and less dangerous surgery than an aortic resurgery. As such, once the initial surgery is successful, the Ross Procedure should provide the lowest long-term risk to the recipient. If the person were very ill and a new pulmonary valve were required, it needn't even be done by resurgery. Pulmonary valves are already being replaced via catheterization.

Best wishes,

 

[Karlynn]

There are no WRONG choices...each option extends the life of the person on the receiving end.

Amen. There are a lot of people on this forum living wonderful lives with each of the many options available. We all have our "favorite" choice and know that each has it's draw backs. The great thing about our family here is that when someone new comes in wondering about the valve options they are given, we can speak to each option personally. No one really tries to sugar coat their experiences, it's way too serious a subject to do that.

Some of us (or our family members) are Rossies, some are clickers, some of us moo or oink, or have a little zombie in them, and some of us were fortunate enough to just need a sewing kit. But the most important thing is the one that ties us all together - we've been there, done that! And we know our most important task of all is doing a lot of cyber hand-holding.

Life is so VERY good!

PS: My scale today was proof positive that 13 years on Coumadin has not kept my diet too restricted.

 

[markwel]

Thanks.....Everyone

Thanks.....Everyone

I knew when I stubbled across this site it wasn't by chance. I truely appreciate all your help and comments. This is a very trying and soul searching time in my life right now. I am blessed to be able to have time to research this subject and make an informed decision. My wife is a tremendous positive help in my life and without her this would be almost impossible. I have three children who are still shocked by all of this and I just hope they understand that everything will be OK...if we leave it in God's hands. (I see those "questions" in their eyes)

As I mentioned before I see another surgeon Tuesday 11/30/04 about the Ross procedure. I'll be talking with Dr. Robert Salley in Lexington, KY. Any info on him would be appreciated. Your posts have armed me with the questions I must ask him about my particular situation. Wish me luck on making the right decision.

My family is in for the holiday and it helped me so much laughing and talking with them. I feel I now have another family here I can turn to for support. I'm so blessed in many ways. If I'd never made my appointment with my physician for the physical I would have never known about my condition until maybe it was too late. I thank God for that.

I'll keep everyone posted about my surgery date, etc. Thanks again to everyone for your help and for this wonderful site!

 

[Arlyss]

From the Medical Literature

From the Medical Literature

I amended my earlier post to clarify that my comments regarding what I would wish to be done in my own chest applied specifically to what I would wish if I specifically had Markwel's description of a bicuspid aortic valve with aortic insufficiency and an ascending aortic aneurysm. (This also assumes I am not a child needing a valve that can grow!)

For anyone who would like to read it, the text Cardiac Surgery in the Adult is online and provides a great deal of information. For those wishing to read further about options such as the Ross procedure, the following chapter brings together a great deal of information in one place and includes numerous references from the literature. http://cardiacsurgery.ctsnetbooks.org/cgi/content/full/2/2003/867

It may be helpful to note Table 1-2 in this chapter, which lists what is currently understood to be both favorable and unfavorable for consideration of a Ross procedure. Included in the unfavorable list is having aortic insufficiency or having a dilated aorta. In addition to this, a search of the most recent literature in PubMed may provide additional information.

Until more time elapses and more studies are done, there is still a great deal that is not fully understood. This leads to the current controversy in some areas, where situations are complex and information appears conflicting or unclear. It is the continual questioning and pursuit of the best possible solution that has moved the treatment of valvular heart diesease, as well as aortic disease, to where it currently is, and both patients and medical professionals have the opportunity to share in that continued pursuit of excellence.

We have found that it is important to have good follow up. My husband's aorta and heart valves are followed very carefully. I am always very concerned when an aortic aneurysm is present or there is a potential for one to develop. It was 11 years following my husband's AVR, thanks to a skilled echocardiography technician, that my husband's aneurysm was found. Others have not been so fortunate. There are not very many studies looking at the long term history of bicuspid aortic valve patients, but this one from Italy tells what happened to their patients after BAV replacement.

http://ats.ctsnetjournals.org/cgi/content/abstract/74/5/S1773

Best Wishes,
Arlyss

 

[Les]

Carpentier-Edwards Sales Promotion

Carpentier-Edwards Sales Promotion

Doesn't it appear there's a "plant" on board?

 

[Karlynn]

Doesn't it appear there's a "plant" on board?

Why would you ever think that?! I wonder if there's a good recommendation of a really reliable car too.