Hello, I am 35 years old (male) and I have had a repair of the coarctation of the aorta at the age of 3 and an aortic valve replacement at 22. Now I have been diagnosed with an aortic root aneurysm (4,8) and I would like to ask your opininon on when do you think a surgery should be done.
Please be aware that you posted on the peer support forum and not the expert forum. I survived a 5.5cm root/ascending aneurysm, but I'm not a doctor or any kind of medical professional.
Surgeons wait to repair an aneursym until the risk of doing nothing outweigh the risks of surgery. To my knowledge, most cardiothoracic surgeons will wait until an aneurysm is at least 5 cm in diameter, and some will wait until it is 5.5 cm in diameter. That assumes there is nothing wrong with the valve and that there is nothing else going on that independently requires open-heart surgery. If the valve were to fail, a 4.8cm aneurysm would be repaired at the same time as the valve was replaced. But with the aneurysm as the only problem, most surgeons would consider either 5.0 or 5.5 to be the point when the odds change and it is more appropriate to operate than to wait. An exception is made if an aneurysm starts to grow very fast or if the patient develops chest pains that are thought to be secondary to the aneurysm. Under those circumstances, most surgeons will operate sooner.
Thank you for your answer. If I may ask one thing more (I will post my questions in the expert forum as well, but I would appreciate it if you gave me your opinion too). How can one feel safe that a rupture will not occur suddenly at this diameter even if he is being followed and has no symptoms as far?
The doctors use a statistical model which shows that the possibility of a rupture is remote until the aneurysm reaches a size of 5.0 or greater. A rupture at 4.8 is not impossible, but it's not likely. The decision as to the timing of surgery is a matter of playing the odds. The risk that you will die in surgery is not zero. It is necessary to balance out which is the greater risk: operating or not operating.
If your doctors are telling you to wait to have the aneurysm repaired, it's because, in their judgment, the risk of surgery is not yet justified. They have data about the risks of different courses of action. The data that they use has been derived from the outcomes of many, many patients over the years. Again, the doctors' strategy is to wait until the risk of doing surgery is less than the risk of not doing surgery. Their judgment in most cases is that, at 4.8, it is still riskier to operate than it is to do nothing.
Thoracic aortic aneurysm repair is a very complex operation in which a small but significant number of people will either die or have life-changing comlications such as a stroke. You don't want to take that risk until you absolutely have to. If the aneurysm should start to grow faster than expected, the odds change. If you should start to have chest pain that is thought to be related to the aneursym, the odds change.
I'm sorry you have this aneurysm, and I do know what it feels like to get this news. When I was told I had an aortic aneurysm, my only thought was, "get it out." But if your doctors are telling you to wait until 5.0 or even 5.5, you are getting standard advice. If you have not yet talked to a surgeon, it would be fine to go ahead and do that, just to get the additional imput.
While you are "in the waiting room" for surgery, it is important to control blood pressure, because hypertension puts excessive stress on the vessel walls. It's important to keep your monitoring appointments, so you know what is up with the aneurysm. It's also important, and perhaps this is even the most important thing, to find a way to keep calm and be peaceful and enjoy your life.
Post again, any time you want. I will be thinking about you.
Forgive me if I am becoming a little "pesky"! I was wondering, have you heard anything regarding people who are taking anticoagulants (Coumadin) -because of a valve replacement- whether they are in any kind of risk if they also have an aortic aneurysm? If yes, then do you know if the time for an aneurysm repair changes; that is, does it need to be done earlier?
If you're asking whether your aneurysm surgery will be moved up because of increased bleeding risk in case of a rupture or dissection of the aorta, I don't think so. If your aorta ruptures or dissects, it is not going to matter if you are on coumadin or not. There are some things that have such a high rate of fatality that being on coumadin does not really add significantly to the risk. It's almost like, if you are skydiving and your parachute does not open, it does not matter if you forgot to put on your helmet that day. That's a rough way of putting it, so I hope you understand my intention. If your aorta were to rupture, and you were anywhere but on an operating table -- and with your chest already open -- you would be a goner. You would not be any more of a goner because you were on coumadin. You can check with your doctors, because this is just my opinion as an informed patient, but no, I don't think your being on coumadin will change the timing of your aneurysm surgery.
Man, I feel ya. I've had two AVRs, a root/ascending aneurysm repair, and I'm on coumadin. And with all that, the best I can tell you is to live your life, enjoy yourself, and try to fulfill your highest purpose on earth to the best of your ability. No one is guaranteed to live even one more day on earth, no one. You may end up living longer than some 18 year-old, totally healthy person. And a 100 year life-span is like the blink of an eye in the big scheme of things. So try your best to get the best medical care you can, as you are rightfully doing, and enjoy every day. Tell the people you love that you love them. Take time to smell the flowers. Live every day and try to make it count. All those cliches, they're true.
You're not being pesky. You can post all you want.
Oh, okay. No, I wouldn't think so. I can't imagine how coumadin would do that, and I've never heard of anything to that effect. Coumadin doesn't irritate or damage your blood vessels. It interferes with the body's use of vitamin K to form a clotting factor that is manufactured by the liver. That's all coumadin does, as far as I know. The lack of that clotting factor causes your blood to clot more slowly. It doesn't do anything to cause a blood vessel to rupture.
Concerning my aneurysm? Yes, of course. I have always been under medical attention (since I was born). The thing is when I had my last operation on 2000 (aortic valve replacement), they didn’t tell me anything about an aneurysm (even if it were at the very early stages). I found out about my aneurysm on 2007 when I had my first CT post operation. It hasn’t changed since then (4,8cm). I had my last CT few months ago and it’s still exactly the same. Actually this makes me wonder a little. How could it have such a rapid progress at the beginning (I mean from 2001 to 2007) and now, all of the sudden, it has stopped progressing? Isn’t it a little unusual?
Regarding Coumadin I have read the following in the book of Diana M. Schneider “The Coumadin (Warfarin) Help Book” in the Chapter “Who should NOT take Coumadin”: “Unless your doctor believes that the benefits outweigh the risks, he will generally not prescribe the drug (Coumadin) if you have any of the following conditions: An aneurysm in the brain, heart, or elsewhere in the vascular system".
Of course I see that in my case taking Coumadin is unavoidable, but still -since that under normal circumstances one should not take Coumadin (according to the writer) if he has an aneurysm- I am wondering what are the possible effects which the drug might cause to a patient like me.
There is so much baloney out there about coumadin. (I'm on it, too, since 2004. There is SO much baloney out there about coumadin.) I guess the book author could have said something like this: "If you happen to have an aneurysm, your doctor may not want you to take coumadin, for obvious reasons. If the aneurysm should start bleeding, the coumadin will slow down clotting, and you will bleed more on coumadin than you would otherwise. In some cases, however, you may not be able to avoid taking coumadin. For instance, if you have a mechanical heart valve, the very real and present risk of forming a clot on the valve outweighs any theoretical risk that your aneurysm could start bleeding and yet not bleed like a firehose. Most likely, your aneurysm will not rupture, as long as you have careful monitoring and management. And if by some weird chance, your aneurysm is of the aorta, and it does rupture, then it's sayonara baby in any case. "
More later, about predicting the growth rate. I have to go AFK for a little while.
As for the growth rate of aneurysms, the "expected" growth rate is 1mm per year, so it's good that yours has grown less than that since 2007. There's no telling what the diameter of your aorta was at the time of your surgery, unless you had a presurgical CT scan, and the records of it still exist. Your aorta could have been only slightly enlarged at the time of your operation, and perhaps the surgeon chose not to do anything in the hopes that it would not enlarge any more. If it was only slightly enlarged at the time, that would have been a very difficult judgment to make. If there was slight enlargement or even normal diameter, then few surgeons, especially in 2000, would have done anything more than replace the valve.
There is no way to know what your aneurysm will do in the future, except that, with you being as young as you are, it seems like a pretty safe bet that you probably will need surgery sometime in the indefinite future. It just doesn't seem probable that your aneurysm won't grow even 2 more mm in the next 40 or 50 years. I have heard of people whose thoracic aortic aneurysms stayed "stable" for many years and then suddenly grew very fast. Or yours might start growing at the "normal" rate of 1mm per year. There's just no way to know what it will do, which is why it has to be monitored on a regular basis.
My surgeon hasn’t told me clearly the number he’s looking for. Just that if we reach 5,0 we will then start thinking about what needs to be done, bearing in mind all the other factors of my situation (that is, I guess, my valve’s functioning, my repaired coarctation etc.).
In your answer regarding Coumadin you say “If the aneurysm should start bleeding, the coumadin will slow down clotting, and you will bleed more on coumadin than you would otherwise”. What does bleeding mean? Is it something different than rupturing?
Do you think it worth anything trying to find out whether a presurgical CT record still exists from my valve replacement operation on 2000? I had that operation in London by the surgeon of whom I was followed by until then. However after my operation, until now, I am being followed by a different surgeon here in my country. So, do you think it would help if I knew what was going on at that time?
Now, there’s another thing. Besides my 4,8 root I have also a mid-ascending aortic aneurysm. This one was not so “sleepy” as the other one! At 2007 it was 3,8 and now is 4.5cm. So, the question can they fix 2 aneurysms at one operation, or even more?
When you say “I have heard of people whose thoracic aortic aneurysms stayed "stable" for many years and then suddenly grew very fast”, what do you mean by “many years”?
If a blood vessel ruptures, that means that the vessel wall tears all the way through. If it ruptures where there is an aneursym, it can burst like a balloon. Naturally, blood will escape from the vessel at that point. So in case of a rupture, there is bleeding. Actually, with the aorta, ruptures are not usual. When disaster strikes the aorta, it is usually in the form of a dissection, which means a separation develops between the layers of the vessel wall. Either a rupture or a dissection is very bad.
No, I don't necessarily think it is worth trying to find your records from the 2000 operation. You asked a question about whether you had an aneurysm at that time, and I'm just saying that the only way to know would be to check those records and see if there was a CT done. However, if you have not seen a doctor in that country in many years, my guess is that the records no longer exist. In the US, medical records are usually destroyed after seven years unless the same doctor is still seeing the patient, in which case a continuous record will be maintained. The only reason to try to find those old records would be to satisfy your curiosity, so it's up to you.
Yes, the root and ascending aneurysm will be repaired at the same time.
When I mentioned that I had heard of people whose aneurysms stayed stable for many years, that was on another forum, and it has been quite a while since I read those posts, so I do not recall how many years it was that the people were reporting. In any case, your aneurysm is growing, so yours is not stable. Whether you consider that you have one aneurysm or two, the whole root and ascending is going to have to be fixed at the same time. The root and ascending are one continuous structure. In practical terms, you have one aneursym, and it does seem to be slowly growing. In fact, at the mid-ascending it is growing at just about the expected rate of 1 mm per year.
Okay, let us know how things go. You can just come back to this thread, if you want to. If you post again on this same thread, it will be bumped up to the top, plus I will get an update email. If you can't find this thread at the time, you can start a new one.
It sounds like, when something gets to 5.0, your surgeon is going to take your wishes into account. So if you want to continue to postpone surgery, your surgeon will probably listen, and if you can't stand the suspense of just waiting, the surgeon will probably listen to that also. Your feelings won't be the only factor that he will be thinking about, but for him to say to you now that when it gets to 5.0 "we'll start thinking about what needs to be done," it sounds like you are going to be able to have some input into the decison.
Back again. I think that when he says "we'll start thinking..." he means the team of the doctors involved in my case (consultants, surgeons). I am visiting the American Heart Institute and there things function through team work. However, my thoughts will be apprciated I beleive. To be honest I am completely neutral about the issue. I am ready to follow their suggestions.
“The investigators found that creating a ratio between maximum aortic diameter and body surface area was more accurate at predicting adverse aortic events than maximum aortic diameter alone. Specifically, an Aortic Size Index of 2.75cm/m2 or greater conferred a yearly risk of 8% of the cumulative end point of rupture, dissection and confirmed aneurysm-related death.”
I just came across the above, according to which I am at danger for dissection since I am 5,8ft and 132lbs with max. diam. of my root aneurysm 4,8cm. That gives me an aortic size index of 2.79 cm/m2. What is your opinion about this?
Have you come across the following link: http://valleyheartandvascular.com/Thoracic-Aneurysm-Program/Calculate-Your-Relative-Aortic-Size.aspx
I have not seen that website before, but it looks like it has some good information on it. As far as the formula goes, yes, the ratio of body surface area to aortic diameter is a consideration in deciding on the timing of surgery.
On that page with the calculator, did you notice that on the two bar graphs, there is a separate one for Marfans/BAV? I assumed initially that you have BAV, because of the age at which you had your valve replaced. But now that you have mentioned your height and weight, I'm wondering if you have Marfans. Either way, the connective tissue problems associated with BAV and Marfans do consitute another risk factor.
I'm going to have to study that website. Is there some interpretative text for the bar graphs?
I was born with a BAV, but as you already know I've had it replaced with a mechanical one, so now I think I am not cosidered to be a BAV patient, is that right? As far as for Marfans, no, I don't have it. I just don't like eating too much!
The link to the study is the following:
(Davies RR, Gallo A, Coady MA, et al. Novel measurement of
relative aortic size predicts rupture of thoracic aortic aneurysms.
Ann Thorac Surg 2006;81:169e77.)
Thanks for the additional info. I will definitely look at the cts journal article and post any thoughts about how it relates to your situation. Before I click on xa.yimg, what is that website, please? Are you fairly confident that it is something that is secure from malware? It may be perfectly fine; I'm just cautious about clicking on things that I don't recognize.
Regarding the BAV, experts have found that it can be associated with connective tissue problems that are similar to, but less severe than, Marfans. A good source of general information about this is the Bicuspid Aortic Foundation. They have a website (and it is safe to visit).
Okay, never mind about the xa.yimg. It is a yahoo server, so I guess it is as safe as anything else on yahoo, lol. I'll look at everything you provided and think about it and get back to you. In the meantime, I invite you to look at the Bicuspid Aortic Foundation's website. You can just google it. They are good people.
I did look over the Yale study on the ratio of aortic diameter to body surface area, and I also spent some more time looking at the Valley Heart and Vascular website. All of the information looks valid to me. I'm not an expert, just an informed patient, but I didn't see anything that looked obviously wrong.
So now you know that, by the standards of certain experts in the field, you already meet criteria for aneurysm repair surgery. What do you think you'll do?
Firstly I’ve arranged an appointment with my physician/surgeon next month. I need to let him know about all these I have come across and ask for his opinion regarding these findings. Then, according to what his position will be, we’ll see what options I have.
To be honest, there is one thing that makes me wonder a little about this study. Let’s say that I decide to start eating (healthy food of course) and I put on 10 more lbs. That will automatically set me out of danger! Does this make sense to you?
Would you be out of danger if you were to put on ten more pounds? No, obviously, you would be no more in or out of danger, under those circumstances. Putting on ten more pounds is not going to change the fundamental condition of your aortic tissue.
The ASI (aortic size index) is just a number, kind of like your age is just a number. On the day that you turned 21, were you any more or less of an adult than you were the day before? In any meaningful sense, no. You were just in a different category, because the number changed. It's the same with this.
If you were to put on ten pounds, your body surface area would be greater, and so according to the model, your aorta could be bigger without being "too big." But the cut-off point for what is considered too big is arbitrary. It is just a line that was drawn by the researchers, because they had to draw the line somewhere. At 132 lb., you are barely on one side of the line, and at 142 lb., you would be barely on the other side of the line.
The ASI formula allows for prediction, and that makes it a help in decision-making. It is still necessary to use common sense and to consider other information. That is why talking to your doctor to see what he makes of this is a good idea.
Now, here is the kicker. On the other bar graph, the one for BAV/Marfans, your status does not change, if you gain ten pounds. According to the newest research, which Valley Heart and Vascular seems to be aware of, BAV is a syndrome that often or usually includes a connective tissue defect. That means that the aortic tissue of people who have (or who have had) a BAV is weaker than normal. That, in turn, means that surgery is indicated sooner for those with either BAV or Marfans than for those without. That is why there are two bar graphs. The one on the right is the one that is more applicable to you.
There is a close enough association between BAV and the connective tissue defect that, in recent years, people who have BAV are generally considered to have a more generalized connective tissue defect until proven otherwise. BAV is considered a predictor for other problems. People with BAV are put in a different statistical group, for decision-making purposes. I guess you could say that you don't know about your own aortic tissue for absolute sure, until you have your aneurysm repaired, and the tissue is tested in the path lab. But, to be blunt, you can be pretty sure you do have the tissue defect, simply because you have the aneurysm. There is no other ready explanation for your aneurysm. If your aneurysm and your BAV are independent, it's like lightning striking twice. Again, check the website of the Bicuspid Aortic Foundation in Los Angeles, for a lot of good information.
Arur Evangelista in his article (of which I’ve sent you the link) writes:
“To identify patients at risk for thoracic aneurysmal disease or those at risk for rapid expansion of a known aneurysm, analysis of biophysical properties using MRI or serum markers such as matrix metalloproteinases and endogenous inhibitors could permit both monitoring of the natural history of ATAA disease and surgical staging.”
I know MRI, but I was not able to find kinds of tests are those conducted by serum markers. Do you know anything?
I didn't get the link to the article, but I'll look at it if I can find it. Did you sent it to my inbox?
MRI just tracks the size and shape of the aneurysm, which I assume is what the author means by "biophysical properties." If you're going to have to undergo repeated measurements of an aneursym, MRI can be preferable to CT, because MRI gives you no exposure to ionizing radiation.
Any tests based on serum markers (that is, blood components) would have to be investigational at this point, as far as I know. For your doctor to be able to give a blood test that would tell him when to do surgery would be like the Holy Grail of aortic medicine. Again as far as I know, there is nothing like that available that a practicing physician can actually order. I'm thinking that this author has to be talking about research -- either research that is underway now or research that he hopes will be done in the future.
The fact that there is no blood test is the reason why doctors continue to rely on statistical models for decision-making about surgery. They look at the outcomes of many other people in similar situations to yours, and they infer from group outcome data the type of outcome that is likely for you. If they could do a blood test that would measure serum markers for your aortic tissue status, they could do a better job of homing in on what is a likely outcome for you as an individual. But right now, as far as I know, they can't do that.
Sorry, I think I' ve made a mistake. It seems that there isn't something relevant in the 2008 guidelines with my case. The 2010 Guidelines however are very interesting. I am sending you the link in case you want to have a look at them. I‘ve spoken with my doctor and he asked me to send him the info I‘ve told him about. I will see him on the 15th of March to discuss on the issue. Meanwhile I’ve contacted Cleveland Clinic and BAF asking for info regarding my situation. They have given me important answers. I would send them to you if I had a way.
Here are the links for the 2010 AHA Guidelines:
(you can download a PDF format of the archive here)
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