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workmonkey

Active member
Joined
Dec 2, 2013
Messages
36
Location
Brooklyn, NY
Hello Everyone.

I wanted to get your stories on when you decided to have surgery for your ascending aortic aneurysm (or when you plan on it). There seems to be conflicting and evolving thoughts and data about how proactive to be.

I was diagnosed with a functional bicuspid aortic valve earlier this year (no stenosis, no regurgitation, no calcification, etc). My aortic root measured 4.4 cm. My stress test was good. My cardiologist told me we'd be "watchfully waiting" over the coming years with a MRI once every six months or so to monitor growth. While very surprised to hear I had heart defect, I was comforted knowing they could ultimately fix it, if/when the time came. With no symptoms, I went back to life as before.

As part of the "watching", I had an MRI two weeks ago (my first). It showed my ascending aorta measured 5.1 cm. My cardiologist recommend immediate surgery and sent me to a cardio-thoracic surgeon at NYU (I live in NYC). Shocked, I made an appointment and mentally tried to accept the concept of OHS.

Surprisingly, the surgeon (one of the top 100 according to magazines) was decidedly against surgery. He said my valve was perfectly functional for now, so why replace it? He said it isn't a guarantee that bicuspids will ultimately fail. He also said given my age (38 year old and asymptomatic) let's wait and monitor how the aneurysm develops. I'm on statins and beta-blockers to manage it in the meantime. He was very confident in his recommendation and called my cardiologist to report back.

I later talked to my cardiologist, who politely disagreed with the surgeon. He says 5.0 cm is the "new" cutoff (for years it seemed it was 5.5 cm .. It seems the increasing safety of this surgery moved it down).

My instinct is to follow the famous surgeon who has done hundreds if not thousands of valve replacements and aortic repairs. My cardiologist seems to be looking at absolute numbers, whereas my surgeon is looking at me as an individual. But that may just be wishful thinking.

It seems every case is different and it is hard to know the rules. Dr. Svennson at Cleveland Clinic seems to use 5.0, and according to his formula I should have surgery. But even he says, that's a general rule of thumb, not an absolute. I'm getting a second opinion from another experienced surgeon at NY Presbytarian in a few weeks.

I'm obviously prepared to have the surgery to prevent a rupture. However, if I'm not in immediate risk then I'd rather wait and see how this thing develops, confident in knowing I'm "diagnosed". It isn't so much a fear of surgery (which I have as I'm sure you all did) ... It is the practical notion that because valves wear out, and I'm 38, if I could buy some time, it'd help me in the long run. I also don't want to have OHS if my threat of an aneurysm is only 3% or so, which seems to be the data below 5.5 cm. Every different hospital and medical journal I read seems to have a different take on the proper time.

As a final question, does anyone have thoughts on Losartan (vs beta-blockers) to slow down the growth of the aneurysm? There seems to be a lot of buzz about it recently.

Your stories and criteria for decision-making would be helpful. Thanks in advance.
 
Hi,
I have already had my bicuspid valve replaced 15 years ago and my aortic root is 4.9 cms and has been for a few years.
In February my cardiologist was all for surgery but when the MRI showed it was static he backed right off.
Like you I was in a real quandary but if you look at the article I posted last night in Advancement Forum it makes you realise that new advancements are being made all the time and we may yet be saved having to go through full OHS.
Sorry about the ramble but if I was you I would find out why your aorta is dilating,is it a connective tissue problem and also I believe there is a more formulaic way of deciding when an aorta needs replacing which is used at the Cleveland Hospital (I think) but somebody here will know for certain.
Hope this may help a little.
Best wishes
Adrienne
 
I would want to know the rate of growth before I decided upon surgery. Did the surgeon suggest having another MRI in 6 months? Although I've only had my bicuspid aortic valve replaced, our 4 year old grandson is being watched for aortic growth since the numbers have increased since he was initially diagnosed with the same bav condition that I have.
Do you smoke? That seems to be one of the factors they use in basing their decision on when it's time to operate.
 
Hello Everyone.

I wanted to get your stories on when you decided to have surgery for your ascending aortic aneurysm (or when you plan on it). There seems to be conflicting and evolving thoughts and data about how proactive to be.

I was diagnosed with a functional bicuspid aortic valve earlier this year (no stenosis, no regurgitation, no calcification, etc). My aortic root measured 4.4 cm. My stress test was good. My cardiologist told me we'd be "watchfully waiting" over the coming years with a MRI once every six months or so to monitor growth. While very surprised to hear I had heart defect, I was comforted knowing they could ultimately fix it, if/when the time came. With no symptoms, I went back to life as before.

As part of the "watching", I had an MRI two weeks ago (my first). It showed my ascending aorta measured 5.1 cm. My cardiologist recommend immediate surgery and sent me to a cardio-thoracic surgeon at NYU (I live in NYC). Shocked, I made an appointment and mentally tried to accept the concept of OHS.

Surprisingly, the surgeon (one of the top 100 according to magazines) was decidedly against surgery. He said my valve was perfectly functional for now, so why replace it? He said it isn't a guarantee that bicuspids will ultimately fail. He also said given my age (38 year old and asymptomatic) let's wait and monitor how the aneurysm develops. I'm on statins and beta-blockers to manage it in the meantime. He was very confident in his recommendation and called my cardiologist to report back.

I later talked to my cardiologist, who politely disagreed with the surgeon. He says 5.0 cm is the "new" cutoff (for years it seemed it was 5.5 cm .. It seems the increasing safety of this surgery moved it down).

My instinct is to follow the famous surgeon who has done hundreds if not thousands of valve replacements and aortic repairs. My cardiologist seems to be looking at absolute numbers, whereas my surgeon is looking at me as an individual. But that may just be wishful thinking.

It seems every case is different and it is hard to know the rules. Dr. Svennson at Cleveland Clinic seems to use 5.0, and according to his formula I should have surgery. But even he says, that's a general rule of thumb, not an absolute. I'm getting a second opinion from another experienced surgeon at NY Presbytarian in a few weeks.

I'm obviously prepared to have the surgery to prevent a rupture. However, if I'm not in immediate risk then I'd rather wait and see how this thing develops, confident in knowing I'm "diagnosed". It isn't so much a fear of surgery (which I have as I'm sure you all did) ... It is the practical notion that because valves wear out, and I'm 38, if I could buy some time, it'd help me in the long run. I also don't want to have OHS if my threat of an aneurysm is only 3% or so, which seems to be the data below 5.5 cm. Every different hospital and medical journal I read seems to have a different take on the proper time.

As a final question, does anyone have thoughts on Losartan (vs beta-blockers) to slow down the growth of the aneurysm? There seems to be a lot of buzz about it recently.

Your stories and criteria for decision-making would be helpful. Thanks in advance.

All good points made by Duffy and Lucky. I recall reading the new guidelines for cutoff of BAV has been lowered to 5 cm. However, there is also indexing for your body size as well as determining whether the aneurysm is changing at all. I know there was a thread posted not too long ago about aneurysm and guidelines. Sorry as I am in a hurry, otherwise would search for you. I have to admit that usually one reads that the cardiologist tends to be more conservative than the surgeon. In your case, it is the opposite.

All the best with your decision making. Let us know how it goes.
P.S. I am in a different boat than you as I had AVR 4 years ago and the doctors have now detected a small aneurysm which they are monitoring.
My cardio told me 5 cm was the new cut off for aneurysm surgery unless they were replacing the bicuspid valve at the same time. He said the cut-off would then be 4.5 cm. I still think body size index should also come into play.
 
You've gotten great answers here.

I highly respected both my cardiologist and my surgeon, and they had great respect for each other. But I recall the cardiologist being a little more antsy about getting my aortic valve/root replacement done and the surgeon being a little more of the mind to wait and see a little longer. But then they found a rapid rate of growth of the aneurysm and the surgery was on. So rate of growth is a factor, and so is the size of the individual (I remember my surgeon telling me that my being a big guy might make my cut-off number a little higher than for some). In any case, it was either 5.3 to 5.5 at time of surgery (I've got the exact number in my files somewhere) And my understanding was that the general magic number was 5.0 cm even back then almost 9 years ago -- but that it could vary with the individual.

Don't know if this is helpful or not -- just passing along my experience and my recollections.
 
Thanks everyone for the quick and helpful responses.

To answer your other questions: I don't smoke and am generally pretty healthy. I'm on the taller side (6'2"/185 lbs) which may have influenced my surgeon's assessment. Apparently, aortic diameters tend to have more leeway based on BMI, etc.

I'd agree with both you (and the surgeon) that for now there is room to monitor how the aneurysm is growing. I do know that if growth is rapid, the decision would be made for me. I also know aneurysms can grow extremely slowly, so that would be the goal. But it'd be ideal to know one way or the other.

I also have read that MRIs can have different measurements according to who is reading it, so would want a 2nd reading regardless (since the difference in 2 mm is the difference between surgery and not).

As far as trying to keep the aneurysm stable, I've read that Losartan has been shown to help (although only tested on people with Marfan's, which I don't have). Currently, I'm on beta-blockers, which I've read mixed data on. Some say it can harden arteries which you don't want ... Others say that it reduces blood pressure extremes to keep everything stable.

In any event, thanks again, and its great to have a community of people out there who have been through this - It makes this whole thing manageable.
 
Waiting and watching to see how an aneurysm develops? Why? I've read that once an aneurysm exceeds 4.7cm, it generally continues to grow. An increase from 4.4 to 5.1 seems larger than the margin of error in the tests. As to the risks, that 3% (to 6%) risk is per year. As recently discussed in another thread, then your risk of going 5 years without issue is (1 - 3% (to 6%)) ^ 5 = 86%, or 14% risk of issue (27% using the higher risk number). The general surgical guideline is 5.0cm for those with BAV, because it is thought that the aorta is not as well formed in those with this condition. You will find some good information about aneurysm's here: http://www.ncbi.nlm.nih.gov/pubmed/20185035
and also here: http://www.valvereplacement.org/for...se-and-stress-with-Aortic-Aneurysm&highlight=

Losartan seems promising to have potential to slow aneurysm growth in those with BAV, but it is only a theory at this point. I take a small dose in the hope it will lower my risk of another aneurysm.

Like you, I have a well functioning BAV, but my only decision was whether to spare or replace the valve (I spared it). The surgeon and cardiologist both recommended surgery asap, and my aneurysm was 5.0 to 5.1cm.
 
I was 34 when my 6cm aneurysm was discovered. Surgery was scheduled 6 weeks from that date of discovery. I did not have bicuspid valve, but my aortic valve would be replaced, it was leaking. When my surgeon got in there to fix my aorta, it fell apart in his hands! They can't tell the condition of the aorta from the tests ahead of time. Mine was a ticking time bomb, very close to dissecting, but surgeon didn't know it. I was lean, and very active. It seemed that there was no rush to get it done urgently, like in a few days. Maybe my 1st surgeon learned something from my case. ( I hope, anyway). I think, then, that 6 was the number for surgery, but now it's been lowered to 5, especially in women?
 
Waiting and watching to see how an aneurysm develops? Why? I've read that once an aneurysm exceeds 4.7cm, it generally continues to grow. An increase from 4.4 to 5.1 seems larger than the margin of error in the tests.

Hi AZ Don,

Thanks for your story.

I've also read that the bigger aneurysms get, the faster they can grow. I'm only waiting as my surgeon recommended as much. Whatever his read of the MRI, he said there is no need for surgery yet. Maybe he is old school? He seemed young enough. I'm getting a 2nd opinion for posterity.

I've written to my cardiologist about a switch to Losartan. It seems like it can't hut, as I'm already taking beta-blockers to lower blood pressure, so might as well switch to Losartan, as it lowers blood pressure as well. I'll see what he says.
 
Interesting you should mention Losartan:

When I had my echo in June, my ascending aorta was 4.1. This was subsequently confirmed with MRI. A TOE a few weeks ago showed 4.0. I had another echo yesterday, which came up as 3.9. Of course, there are margins of error. Who knows?

I've been on Losartan 50mg, twice a day and I've gradually increased my Atenolol to 50mg in the morning.
 
People keep talking about Losartan.Take it. It worked for me and it may work for you. I have been on it 2 years, I take 50mg in am and 50mg in the pm.I just had echo and it has disappeared.I had a MRI in the spring and they could not see it.What do you have to lose?Take it.
 
Speakig about the accuracy of testing for measurements, my surgeon told me that the CT scan with contrast is the Gold Standard for accurately measuring aneurysms. I had a Ross Procedure and a couple of years later they discovered that my aortic root was mildly dilated. They measured it with the echo and it was 3.9. At the next visit it was 3.6. The following visit it was 4.2 so they sent me to get a MRI. The MRI measured the root at 4.8 and the ascending aorta at 5.2. My next MRI measured 5.2 / 5.4. I had an appointment with the surgeon I mentioned above and he scheduled me for a CT scan. It measured 5.4 / 5.8 and I was scheduled for surgery 2 weeks later. When he measured the root and ascending aorta during the surgery they measured 5.5 / 6.0.

IMO an echo is a poor way to measure aortic root diameter other than to see that it may be dilated to some degree. The CT scan is the most accurate, but it also comes with a healthy dose of radiation. My surgeon sees his patients for life, and he alternates using a MRI and a CT scan at my annual checkups. But when I met him for a consultation before surgery he did a CT scan and said every one of his patients gets a CT scan during a consultation before aortic surgery (his specialty).
 
Hi workmonkey.......I think the first thing I would want to know from either the surgeon or the Cardio is why did the aneurysm go from 4.4cm to 5.1 cm in such a short amount of time? My Cardio keeps telling me that aneurysms associated with BAV grow very slowly, as in 1 cm/year, if it even grows at all. Mine has not grown in 7 years. Also, my Cardio told me that most surgeons decide to operate at 5cm if there is no BAV. If there is BAV, then they operate at 4.5 cm. It's good that you're getting a second opinion about the surgery. Hopefully if "watchful waiting" is once again recommended, that surgeon will give a good explanation, given the current measurement of the aneurysm. Also, I am on both Losartan and a Beta Blocker because I have a BAV as well as an ascending aortic aneurysm. My Cardio said that he feels the combination of the two is the most beneficial way to take pressure off the aneurysm and hopefully slow its growth.
 
Hi workmonkey.......I think the first thing I would want to know from either the surgeon or the Cardio is why did the aneurysm go from 4.4cm to 5.1 cm in such a short amount of time? My Cardio keeps telling me that aneurysms associated with BAV grow very slowly, as in 1 cm/year, if it even grows at all. Mine has not grown in 7 years. Also, my Cardio told me that most surgeons decide to operate at 5cm if there is no BAV. If there is BAV, then they operate at 4.5 cm. It's good that you're getting a second opinion about the surgery. Hopefully if "watchful waiting" is once again recommended, that surgeon will give a good explanation, given the current measurement of the aneurysm. Also, I am on both Losartan and a Beta Blocker because I have a BAV as well as an ascending aortic aneurysm. My Cardio said that he feels the combination of the two is the most beneficial way to take pressure off the aneurysm and hopefully slow its growth.


Hello ... Thanks for the helpful response. To clarify, my aortic root is at 4.4 cm (hasn't changed since it was discovered). My ascending aorta is 5.1 cm (it has only been measured once, a few weeks ago .. So there is no evidence of it growing, or not growing. That is just the first-ever baseline).

I'm "heartened" to hear your aneurysm has not grown in 7 years. This would obviously be my ideal situation. I've asked my cardiologist if I could add Losartan to my beta blocker, as I've read what you describe (that it helps slow or stunt growth). That said, I also know that once aneurysms are over 5 cm, they tend to grow faster. But there are no hard and fast rules it seems. But you are proof they don't always grow.

My surgeon was firm in telling me I didn't need surgery yet. He is my cardiologist's top recommendation, and is well-regarded in NY, so all I can do is follow his advice until I meet with a 2nd surgeon. As my cardiologist later explained it, the "5.0 cm" baseline is just that ... It isn't an absolute rule that applies to everyone. He said surgeons look at each patient individually, and based on my MRI, he didn't think I was a candidate yet. For me, he said 5.5 cm was the baseline. Medically, I cannot tell you why that is the case, other than that my bicuspid valve is still working well, I'm asymptomatic, and there was no sign of dissection. So that may have trumped the number. But again, he is an experienced surgeon so I have to trust it to some extent.

The hard part about this whole thing is that I feel perfectly fine. I felt as healthy as ever before finding out about the bicuspid this summer. Then, out of the blue, I'm told I need open-heart surgery. It'd be easier if I felt surgery was going to make me feel better. But it seems it is preventative - It prevents the threat of a rupture. So it is more about what might happen, not what is happening. That uncertainty makes it hard. Obviously, better to be safe than sorry ... But at what number does the risk of dissection trump the risk of surgery? At 5.1 cm, my surgeon has decided it is unnecessary .. Maybe it tips the closer I get to 5.5 cm. Surgeons today seem to be playing it safer (hence your cardiologist mentioning 4.5 cm). There's simply a lot of uncertainty - I wish there were an option other than OHS! Then all of us could just have this thing fixed without the waiting and worry.

Take care.
 
Oh...ok. Sorry for the confusion. It sounds like you have some very good surgeons with lots of experience, so that is good. Like you, I also felt fine when I found out about my BAV as well as my aneurysm. I went in to an Urgent Care Dr. for a sore throat and found out I had a heart murmur. Investigation of the heart murmur led to the valve and aneurysm findings. I was beyond shocked since I'd lived for 32 years and no Dr had ever heard the heart murmur. I'm grateful that I know about it now. When the time comes for my surgery, it would be preventative as well. Watching and waiting for that "magic" number is hard indeed. Especially since it seems to vary from patient to patient. I just asked my Cardio about this and he told me that it is "extremely rare" for a dissection or rupture to occur at less than 5.0 cm. He said the risk doesn't even go up that much for 5.0 cm - 6.0 cm. I agree with you. I wish there was another option besides OHS, but I guess I'm just glad there's an option to fix it.
 
As an update, I met with another surgeon today for a 2nd opinion. While (fortunately) he also agrees my aortic valve doesn't need to be replaced, he strongly recommends repairing the aortic aneurysm. He disagrees with the previous surgeon's assertion that a measurement of 5.5 should provoke surgery. For him, it's 5.0. My read of the two surgeons is that the first one (who recommended watchful waiting) makes decisions based on experience and personal evaluation. The second surgeon makes decisions strictly based on guidelines. And right now, the guideline is 5.0.

Ultimately, I'll just get the aorta repaired because I don't want to have to worry about it anymore. And sooner or later it'll have to get repaired regardless, so I just want to get on with it. And, I agree with everyone on this forum: we're blessed that we're diagnosed and have an ailment that can be fixed. So I'll schedule a surgery in the new year, despite the disagreement between surgeons.

That said, something today's surgeon said provoked a thought (and continues our discussion above): Above 5.0 centimeters, I have an 8 to 10% chance of a tear or rupture. Another way to look at that, he said, is that I have a 90 to 92% chance of not having a tear or rupture. Because a rupture can be catastrophic, obviously you don't want to take that chance, even if small. Which is true.

However, it'd be ideal if there was another way of measuring who might be at risk and who might not, beyond just diameter. Clearly, not everyone with an aneurysm of 5.0 has a tear over their lifetime. Is there any work on testing to determine why some do and some don't? Or medicine that can help "freeze" an aneurysm? It seems like a blunt instrument to perform OHS on 90 - 92% of people who may not actually be at risk. It also seems rudimentary to compare every single patient among the exact same number: 5.0. Perhaps each person has their own number that is the risk number?

I guess I'm saying because this is technically an elective and preventative surgery (unlike valve replacement, to some extent), it would be ideal to have more data to assess how proactive it makes sense to be. Instead, I'm left to deciding the debate between two well-known surgeons with conflicting opinions, based on a single data point. It seems the science isn't decided on this yet.

I'm probably just taking out my anxiety on this forum. Again, we're blessed that this is correctable and that this surgery is so safe (and that it is even an option in the first place). People have it much worse. It'll just be hard to shake going into OHS knowing one surgeon believes it is unnecessary. Because the surgery has become so safe, I wonder if the medical field is still working on alternatives to surgery?

Anyway, that was just an aside .. I don't want to sound unthankful. I'll continue to take solace from this website and hope to bravely plow through the surgery.
 
I'm glad to hear that you are planning to go forward with surgery. I was in your situation and I studied the risks (see the links I posted previously) and I think there is plenty of evidence to show that the risks of surgery are less than your risk of a dissection over the next year, and MUCH less than your lifetime risk of dissection without surgery. Your first surgeon said your aneurysm needed to be watched. I would not interpret that as meaning surgery is unnecessary, just that he thinks it might be able wait. I think the chance of rupture your Dr. quoted is just your risk over the next year. All the research I have seen indicates your lifetime risk of dissection is much higher.

My recovery from surgery was easier than I expected. I was walking 1/2 mile at a time by the time I came home and swimming 2 months later.
 

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