Aneurysm question.....(posting for someone else)

[musician2k]

(I am posting this on behalf of someone else who has trouble
registering to this forum)

Hello everyone!
I would appreciate if you would look at my case and give me any
insights you may have! Thank you.

15 years ago I had my Bicuspid Aortic Valve replaced with a mechanical
valve. The valve is working out well.
I am now 40 years old and I have been diagnosed with an Ascending
Aortic Aneurysm @5.0cm.
From a TEE done after my surgery, we know that it was at 4.2 cm 12
years ago.

I was originally scheduled for surgery, but then I thought about the
conversation I had with my surgeon and I decided to do some research
first. I've had not much consensus on what I should do. From the various
doctors who have offered opinions on my case (and researched it to some
extent or another), here is the score so far:

3 votes: No surgery for now.
2 votes: Repair aneurysm. Don't replace the valve. Leave the coronary
arteries in place.
1 vote: Replace valve + aorta with porcine valve + conduit. (I'm not
sure exactly which tissue valve comes with a conduit--nor do I really
care)

I would like to ask some questions about the options I'm looking into:

Option 1) Repair aneurysm.
I don't understand how this works. Don't you still end up having those
thin walls that turned into an aneurysm in the first place if you do
this?
This is one of the hardest things for me to get information on from
searching on the Internet.

Option 2) Carbomedics valve with conduit.
It appears there are three mechanical valves that come with conduits.
They are St Jude, Carbomedics and Medtronics. Of these three, I
suspect that the Carbomedics is probably the best (for me) in terms of
anticoagulation risk. There is one meta-study that says that the Carbomedics
valve is better than the St. Jude in the aortic position. No single
study I have found can reach this conclusion with statistical
significance, but this meta study was. (see "Our complication rates are lower than
theirs": Statistical critique of heart valve comparisons). This same
study also says that the St Jude valve is better in mitral position. I
have also read that the Medtronics single-disk valve has some
hemodynamic advantages if it is correctly oriented.

Option 3) On-X valve with conduit attached in the operating room.
In principle I would prefer the On-X valve over the Carbomedics valve,
but I would have to find a surgeon who would want to sew a conduit to
the valve during the operation. I heard of one surgeon who does this
sometimes with the Carpentier-Edwards Perimount tissue valve. He says it
takes an extra 4 minutes to do so. Sometimes he has another surgeon do
this for him, sometimes he is the other surgeon who just pops in for 4
minutes to do the sewing. The benefit is that the On-X valve appears
to be more forgiving of lower INR levels than other mechanical valves on
the market today. I have read that there is a definite risk to being
on Coumadin, and so it would be good to be able to reduce that, but I'm
not sure if it's worth the extra 4 minutes during the operation.
Suggestions?
Also, since they know what size heart valve I currently have, is there
any chance at all they could sew the conduit to the On-X valve before
surgery?
By the way, I have found the people at On-X to be very responsive to my
questions. For almost anyone who needs a simple valve replacement, I
would strongly suggest you work to get yourself fixed with an On-X
valve.

Another question: What do you know about the Cleveland Clinic? I have
heard some say it is very expensive so I should not go there, and
others say that they don't pay their doctors well so I should not go there,
and everything in between. Suggestions?

I am also looking for someone who can stongly recommend a surgeon
anywhere in the USA who they know to be especially good at fixing ascending
aortic aneurisms.

Thanks in advance!
Keith Fuller

 

[DeWayne]

You mention the aneursym, but where is it, how much of the aorta does it include. Is the root also enlarged? Does it include the arch or not. Several things one needs to be aware of before making desicions. As for where to have it done would probably have a bearing on your insurance and how they deal with it.
I just had my bicupid valve and my aortic root and my aorta replaced up and including the bottom of the arch after they found dialation to 5.8 cm., this did not include the area of the arch where the blood vessels are at the top of the arch.
My wife set out to find the best place for me to have it done. While my preference was the Mayo Clinic (I am from Rochester, MN originally) Insurance coverage made that an unlikey destination.
In her research she discovered that the Emory Clinic right here in Georgia had a special program for congenital heart patients. People just like me.
So we went there. We discovered they had one of the top aortic specialists in the country. When we asked we were told that people come from all over the world to see him. It was very comforting to know this. After a couple conversations with Dr. Chen I was sure he was the guy for the job. While the cardiologist talked only about mechanical valves Dr. Chen pointed out that the majority of valve replacesments today were tissue valves. Just from the conversations I felt he was in favor of the tissue valve, although he never actually said so.
My Niece happens to work in the Mayo Clinic cardiac care. So of course we pumped her for as much info as we could get and she was great. I struggled a bit back and forth as to what valve. ON-X looked promising but Dr. Chen said it did not have a collar or something needed for the root attachment and that it was not a good choice for my situation. I had concerns over the noise issue and the coumadin issue a mechanical valve presented. These were my issues, maybe not someone elses. Knowing what my Niece had told me about ablation surgery which was being done by people wanting to get off coumadin, it made me question why I would want to be on it to begin with. Again this is maybe just me, but it was where i was heading.
I finally came to the conclusion that I would go with the Medtronics freestyle valve. the same night my Niece called and we talked, she said she had asked one of their surgeons, if it was HIM in my place and he had to make the decision for himself with the knowledge of having the root, valve and part of the aorta replaced, what would he pick. He said he would go tissue with the aortic graft, mechanical for valve alone, which made me feel I had made the right decision.
I can say so far I am quite happy. going on 5 months now since surgery and there is little I cannot do that I did before. I had no problems from surgery, no leakages of any kind, no real problems. Dr. Chen said he set things up so that if I require another surgery to replace the valve it will be a much simpler operation than the one I went through. What more can I ask for?
Your situation is a bit different since you already have the mechanical valve. Do they want to change it or are you the one considering that?
I guess the idea of newer technology would make me think about it as well.
I know it is possible mechanical valves need to be replaced, I wonder if they do what happens to the attached aorta in those one piece deals. Do they both have to be replaced under such a circumstance? A valid question I would suppose.
As for the 4 minutes of attaching something, its a drop in the bucket time wise, my surgery took approximately 8 hours, 4 minutes to do something else probably would not made a big difference lol

I don't know if I helped you any, but I tried

 

[Susan BAV]

Wow, Keith - You already know way more about valves than I do! But there are some really good brainy Valvers on this site who will, like DeWayne, give you some more excellent information. My surgeon, knowing me and my preferences, highly recommended a tissue valve. Of course, there is that possible connective tissue issue with Bicuspid patients, though.

I was wondering if this thread should be in the Valve Selection section for more views. Have you been able to search there? Some of the old Valve Choice threads from this site are nearly obsolete but there have been several recent threads discussing pros and cons of various more currently used valves, such as the On-X. I don't think a 5.8 cm dialation gives you much time to choose, though, does it? (Correction: a 5.0 cm dialation...and now this thread has been moved to the Valve Selection section)

 

[DeWayne]

for me the 5.8 cm, cardiologist said you need an operation and you need it in the next 6 months. Plain and to the point. I had my surgery about 2 months after she told me that. Enough time to figure out where I was going and how I wanted to get there!

 

[Ross]

My Aneurysm never made it to 5.0. You need surgery yesterday! We need more information on where yours is at. Why are you having trouble registering? Please have someone PM your info to me and I'll set you up an account. Right now, our email is down and mail to the webmaster or I are not delivered.

 

[Arlyss]

Hi Keith,

The situation you are in is where my husband was in 2001 - his aneurysm was found at about 5.2 cm and 11 years prior he had received his mechanical valve.

You are very correct in researching choices, and there are things emerging today that are still just beginning to be understood. I hope you can take advantage of them to give you the best possible future. You do need surgery for your aneurysm assuming it is 5 cm - expert centers are now offering surgery to those with BAVs earlier, from about 4.5 cm in size, depending on other risk factors for that person, of course.

1) While you are trying to decide what to do, keep your blood pressure well controlled. (one center suggests 105-110 systolic) This reduces stress on the aortic wall - you don't want it to tear, which would be an emergency situation. Have you been counselled about this by your doctors?

2) The aneurysm is not "repaired"; it is removed (the term is resected) and replaced with Dacron. All of the aorta that is weak, aneurysmal tissue should be replaced. In bicuspids the ascending aorta is usually where the greatest enlargement is. (The arch may be involved, but if not, taking the entire ascending aorta is important, not leaving part of the ascending aorta behind, which is an easier surgery. When some is left behind, it has caused problems in some people later.)
The aortic root may be remodelled - rather than being completely replaced - but you need to find a surgeon who is very familiar with the "anatomy" of the root in those with BAV and has a proven success record in remodeling the aortic root. (The other approach to the root is the Bentall procedure - basically Dacron replaces the entire root also, and the coronary arteries are implanted into the Dacron graft.This is an older technique, going back to 1968.)

My husband has a remodelled aortic root with Dacron above it. That procedure was done in 2001, and it came through beautifully earlier this year when he needed his mechanical valve replaced. You may not need a "conduit" at all, but you do need someone with the surgical skill to remodel the root, again depending on the "anatomy" that you have.

In BAV, it is the ascending aorta and sometimes some part of the arch that is usually affected. One hopes that the remaining aorta will hold up, but there is no way to know what might happen over time. There are ways to "fix" the other sections of the aorta also, if it is needed.

3) Regarding the mechanical valve:
You are being offered Dacron conduit and mechanical valve solutions - apparently because it is assumed the aortic root must be replaced. As I mentioned above, if the root can be remodeled, an all-in-one valve-Dacron conduit may not be needed.

However, you do have to decide what to do about the valve. Even if you find someone who will remodel the root, and the mechanical valve you currently have appears to be working fine, you must have a very thorough evaluation of your current valve.

The valve must be checked for scar tissue, called pannus. The valve must also be checked for any possibility of valvular strands. A year ago, valvular strands caused a severe stroke and almost took my husband's life - I don't want that to happen to anyone else.

It takes a TEE to find these strands, and those who read the TEE must be very careful not too miss them. In the few months since my husband's experience with valvular strands, I know of three other people (all born with BAVs) that have had their mechanical valves removed because of strands. One person recently had the aneurysm resected and the valve replaced (it "appeared" to be working well) because strands were found - explaining the reasons for TIAs. This might be the surgery that you need - and it is so important to know. You don't want another surgery because the valve begins to show problems, or worse yet, surprises you with a stroke.

There is detail about surgical approaches and technique at
www.cedars-sinai.edu/aorta

You may also find the Bicuspid Foundation helpful at
www.bicuspidfoundation.com

I just want to warn anyone who has a prosthesis, especially a mechanical valve, that it needs careful evaluation. There is a paper written about how prosthetic valves should be monitored. It is located on the Medical References section of the Bicuspid Foundation web site, under the heading "Prosthetic Valves". I encourage you to share this paper with your doctors - it was just published earlier this year, and mentions valvular strands, pannus, etc.

Please feel free to contact me, I would be glad to provide additional information to you.

Best wishes,
Arlyss

 

[Magic8Ball]

There is plenty of info above so i'll try only to add additional.

Your aneursym is growing slowly but you have now entered the 'danger zone' my surgeon showed me some complex math that i didn't really understand which showed that post 5.0 the next 'growth' puts much more pressure on the wall of the aorta than below 5.0. Every .1 of growth puts more than just the value of the growth of extra pressure on your aorta...should have paid much more attention to the math bit.

I think the known risk you now have should colour your decision....even if it continues to grow at .1 every year how long are you going to live with the axe over your head?

My decision was slightly easier as they only found it when i was 5.6 so i really had no choice, just get it done...had it been found at 5.0 then i would have been in your position and having a difficult choice.....you could get 5-6 years or you could hit the deck tomorrow.


The rest of your choices are difficult to help with as you seem to be more informed than most....for me, with all the current info i had at my fingertips i went for a st jude one piece with dacron graft and had my valve/root/ascending aorta replaced in one hit in an attempt to get through the rest of my life without further surgery.....i wasn't interested in tissue and the promises of the on-x re anticoagulation are just that, promises....i wanted a long track record and a one piece unit made at the factory so went for st jude.


Best of luck with your choices.

 

[Cindy]

Hi, My doctor is doing my kids surgery in June. All my doctors acted like they wanted them to have surgery by the time they hit 5.0 .That is when the danger really begins. Their father died of a dissection. I would get surgery. Better to be safe. Even if you are growing slow you could have a growth spurt. Their father was leaking 3 days prior to his death.(He even went to the ER with chest pains, they sent him home with mortrin, he died 3 days later in our living room) His fluid filled the Pericardial sac. They could not revive him because of the fluid in the percardial sac.
Just my opinion.
Cindy

 

[Tom F.]

I want tot add something about a "repair". That is not the best way to describe what happens. Typically when an aneurysm is "repaired" the diseased section of the aorta is removed and replaced with dacron. The difference is that the term "repair" is too often used to simply describe a valve sparring procedure, which leaves your aoric valve in place. You are beyond that now, as your aortiv valve is gone. So either way you go, you will have dacron. Your chice is whether to again use a mechanical valve, tissue, or maybe try for a Ross procedure.

And I cannot speak for Cleveland Clinic, but here in Chicago there are several wonderful teaching hospitals, Rush, U of Chicago, and Northwestern. My surgeon was Robert March at Rush, and I had an ascending aortic aneruysm as well.

 

[Keithf]

Thanks and more info

Thanks and more info

Well, I've managed to register now. Thank you for all your informative replies!

I got myself a second opinion. Dr. John Paris pointed out (among other things) that since I'm on coumadin, an emergency operation on me would be more risky. He quickly dismissed the idea of sewing an On-X valve to a conduit for this operation. He also suggested I go with a mechanical valve; from my reading and experience many surgeons like to use tissue valves for some reason. After talking with Dr. Paris, I thought to myself "that's why they pay those people the big bucks".

 

[Arlyss]

Hi Keith,

Sorry, but I'm not quite following what you are being told regarding the valve. Is this latest consult saying that the mechanical valve you currently have must be replaced? Do you know why? Have they detected any problems - scar tissue growth, valvular strands - on your current mechanical ?

As you were told, you do not want to get into an emergency situation with your aorta - no one does, but for someone on coumadin, it complicates an already very tough situation even more.

Best wishes,
Arlyss

 

[Keithf]

Arlyss:
You ask a good question. Nobody is quite sure why the surgeon wants to replace the valve.

I know the aneurysm is close to the valve. They had a hard time seeing it with the echocardiogram because of its proximity to the valve. It was the CT scan that picked it up. There is nothing known to be wrong with the mechanical valve I have.

I suspect that this just reflects the surgeon's preference to do valve + graft jobs instead of the presumably more rare graft (w/o valve) jobs.

 

[MrP]

Your statement doesn't make sense. The ascending aortic aneurysm you described is almost the diameter of a soda or beer can and would not be obstructed from view by your existing mechanical valve. The aortic root is visible via echocardiogram, but in order to gain visibility and measure the entire ascending aorta, a CT scan or MRI is required. Your mechanical valve will not obstruct the view of an aortic aneurysm. You may want to ask more questions of your surgeon regarding why he feels it is necessary to remove your existing mechanical valve.

 

[Keithf]

Thanks for your reply, MrP. All I can say is that the cardiologist was there with the echo technician and pointing that thing at various angles from different places and all they could see was that close to the valve it was at 4.2cm (IIRC). Then the CT scan came back with 5cm.

I think I will ask the surgeon why he wants to replace the valve but I'm not sure that I would be able to tell if what he says makes sense or not.

 

[MrP]

Keith,
Since the echo image is a two-dimensional view, it is sometimes difficult to find the best angle to give a true measure of the dilated aorta. In other words, there is a margin of error or limit to precision of this measurement. In addition to a dilated aortic root, you most likely have an ascending aortic aneurysm as measured by CT scan and not fully visible by echocardiogram. The CT scan also has a given margin of error, but regardless of the exact size, your aorta is large. The cath test will provide visibility of your coronary arteries prior to surgery and give your cariologist and surgeon more information regarding surgical approach.
All my best,
MrP

 

[Kate]

Hi Keith!
I just wanted to respond to the Cleveland Clinic portion of your orginal question. I had my aortic valve replaced and a 4.8cm ascending aortic aneurysm fixed there about a year and a half ago. I can't say enough about how fabulous the care I received was! My surgeon (Lars Svensson or perhaps Svennson ) spent time carefully explaining my condition and discussing my options, the nurses were plentiful, friendly and helpful and, perhaps most importantly, I had complete confidence that I was receiving the best possible care. You may have already decided where to have your surgery and, if so, I'm sure the hospital you have chosen will do a fine job. However, if you haven't yet decided and have been considering getting a second opinion at CCF, it might be worth doing especially since it doesn't sound like you have a clear understanding of why certain decisions are being made regarding your surgery. Aortic aneurysms are extremely correctable these days when done at an experienced facilty, but it is still a complex surgery especially for someone like you who already has a mechanical valve. Regardless of where you go, please insist on being given all the information you need to be comfortable with the actions that will be taken. Take care, Kate

 

[Keithf]

Hi Kate!

Thank you for your reply.

So, let me guess (I've read some of your other posts and been to the CCF site, by the way). You got a Carpentier-Edwards Pericardial valve with a graft that was sewn on in the operating room. Yes? If so, did Lars sew it on himself or did he have a guest surgeon do it? Did you get the newer model with the thermofix process? Did anyone wager an opinion on how long it would last?

Keith

 

[Kate]

Hi Keith!
You guessed correctly, although Lars originally recommended a mechanical valve for me and I had to fight (admittedly not very hard) to get the biological because of my age (38 at the time of surgery). I didn't inquire into any of the details regarding who did what during my surgery - didn't really care about those kinds of details.

Lars' estimated this valve would last 8 - 12 years in someone my age, although I think this was a conservative estimate to ensure I knew the risks I was taking. According to my research, 50% of people my age who receive this valve still have it at 15 years. I don't believe I received the valve with the newest treatment but am not 100% sure about that. It's model 2700, if that means anything to you. Best, Kate

 

[Keithf]

Hi Kate!

So I guess that Lars isn't going to go out on a limb to speculate how long the new type of tissue valve may last. According to some tests, the thermofix tissue calcifies at 1/4 the rate as the old-style tissue. So by that logic we could speculate that the valve could last some 60 years. But really nobody knows, and nobody is going to know for many years.


I can get myself a mechanical valve here in Indy just as well as at CCF, but I would consider a tissue valve if there were some unbiased educated speculation that could back up my reasoning.

Cheers!

 

[Kate]

Keith,
I haven't heard anyone claiming that a biological valve would last sixty years -regardless of patient age or valve style. The most optimistic estimations I've read were mid-20's and those typically were not for people our age. Since you've already had one surgery, I can understand your reluctance to sign up for what could be two or even three more with a biological valve. I wouldn't either in your shoes. I'm glad to hear you have found a surgeon and hospital with which you are satisfied. Take care, Kate