Surgery on Ascending Aortic Aneurysm at 4.8cm?

[HopefulHeart]

Found an article about 2 petite females (each under 5'4''). One of these patients is the same height as me (5'2''). She had an ascending aortic aneurysm of 4.8 cm. The surgeon who performed surgery on her is well-known Dr. "E" from Yale. He recommended surgery immediately at 4.8 cm. After the surgery he is quoted in this article as saying this woman's aortic wall was as thin as tissue paper....again she was only at 4.8 cm. This article is very frightening to me as I am also 5'2'', except my ascending aorta is at 4.4cm. I have not had many symptoms except for back pain once or twice. Sometimes I feel that heavy feeling in my chest but it is only when I lay down at night to go to sleep and it goes away. Plus it doesn't happen very often. My Cardiologist said it was just fatigue. I certainly am not having shortness of breath of symptoms as severe as this woman in the article was having, but I'm still afraid because I'm like her in all the other ways. I've been doing lots of research and have yet to find an explanation as to why someone would need immediate surgery at 4.8 cm. But her aorta was definitely in a severely diseased state according to Dr. "E" (I use E because his name is very hard to spell). Anyone else have any insight about this or a personal experience that they would not mind sharing?? The woman in this article did have a family history of aneurysms, but did not have Marfans. How is it that shorter people have worse aneurysms than taller people and 4.8 cm could be so deadly? I;m going to bring this up to my Cardiologist at my appointment in 2 weeks and bring this article.......feeling very afraid about this. Also, I tried to post this article but the system would not let me.

 

[Catie]

HopefulHeart, I had posted these links to this article for you on your other thread a few days ago. I don't know whether you had a chance to review the web pages. I'm re-linking and also copying a relevant couple of paragraphs.

http://valleyheartandvascular.com/Thoracic-Aneurysm-Program/Risk-Stratification.aspx These guys partner with Cleveland Clinic.

The surgeon who did my remote consultation from CC used similar calculations to the ones here: http://valleyheartandvascular.com/Thoracic-Aneurysm-Program/Calculate-Your-Relative-Aortic-Size.aspx Though when I was on your other page and ran calculations, I thought you were 5'3", but it still looks like 4.5 may be the tipping point if I have your stats correctly, according to their online calculator.

Situations in which the ‘relative aortic size’ (click here for full article) exceeds published guidelines. It is more than intuitive that a 5 cm aneurysm should represent a different risk to a petite (short stature) lady, as compared with a NBA center, especially in the setting of a genetic syndrome associated with aggressive aneurysm behavior. It is appropriate to compare aneurysm dimensions to body dimensions in certain scenarios. A relative risk system that has been incorporated into current AHA/ACC guidelines relates to patients with connective tissue disorders (i.e. the Marfan Syndrome) or Bicuspid Aortic Valve (BAV). Though Marfan Syndrome is relatively rare (1/10,000 in the general population), BAV is quite common (1/50 in the general population), and is over-represented in the aneurysm population at large. These patients have a genetically-driven absence or reduction of certain proteins that are the building blocks of blood vessels. This leads to weaker and more friable than usual aortas, that typically degenerate into aneurysms, and when they do, they behave in a much more malignant fashion than usual, and intervention has been traditionally recommended at smaller sizes. More recently, studies from Johns Hopkins University and the Cleveland Clinic have shown that a relative risk sizing system is better at predicting aortic dissection or rupture in both Marfan Syndrome patients as well as patients with BAV. A mathematical ratio between cross sectional area of the aorta at its maximum dimension divided by the patient’s height in meters yields a value that is of particular importance. When the Cleveland Clinic Foundation retrospectively analyzed patients operated for acute aortic dissection that were diagnosed with BAV at the time of emergency surgery, they found that using 2 standard deviations around the mean, 95% of aortic dissections could have been avoided in these patients if pre-emptively operated at a ratio above 9.5 cm/m2. For example, a patient with BAV who is 5’ 8” and has an aortic root aneurysm with a maximum diameter of 4.7 cm has a cross sectional area to height ratio of 10 cm/m2, favoring elective aneurysm surgery to prevent rupture or dissection.

It is intuitive that relative aortic size should also be relevant in non-BAV/Marfan patients, and though a risk system for these ‘general' aneurysm patients has been proposed based on data from Yale University, these findings have not yet been incorporated into the latest AHA/ACC guidelines. This risk system may still have some usefulness, especially in equivocal patients who are experiencing intermittent chest or back discomfort as described above. 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 2.75 cm/m2 or greater conferred a yearly risk of 8% of the cumulative end point of rupture, dissection and confirmed aneurysm-related death. For example, a patient who is 5’ 3” and 120 lbs (body surface area of 1.56 m2) with a 4.4 cm ascending aortic aneurysm has an aortic size index of 2.82 cm/m2 (maximum aortic diameter divided by body surface area). Such a patient could be considered for surgery outside of the guidelines particularly in the setting of recurring chest/back symptoms with an otherwise negative work-up.

 

[cldlhd]

I'm a 6'2" male and I had my surgery when my ascending was estimated to be 4.7 or 4.8 cm. It turned out to be 4.99 and the report said the wall was thin. I'm not saying this to scare you, I'm sure you're already there, but it's what happened. I wasn't told I needed surgery immediately. My surgeon said I could wait and that I was on the cusp so the decision was mine.

 

[HopefulHeart]

Thanks so much to both of you.....Catie and cldlhd. With all the information I've read on this site from you and others, there is no way I'm waiting till 5cm. And definitely not waiting till 5.5 cm which is what my Cardio wants me to do.

 

[Catie]

When I took a copy of the web page from Valley Heart and Vascular to my old cardiologist and my aneurysm had just increased in size, he glanced at it and said that he was sure there are others who disagree with that research. But all three surgeons I consulted agreed with this view and stated it is time to address my aneurysm at 4.7/4.9 .

 

[cldlhd]

Thanks so much to both of you.....Catie and cldlhd. With all the information I've read on this site from you and others, there is no way I'm waiting till 5cm. And definitely not waiting till 5.5 cm which is what my Cardio wants me to do.

My cardiologist wanted me to wait and medicate but when my surgeon, who she basically worships, said it's close enough to be my call she didn't put up any resistance. I don't like telling others what to do but I'm glad I got it done.

 

[AZ Don]

Hi, I think that I have pasted that calculator as well. In the American College of Cardiology guidelines, it says something to the effect that there is not enough information to use the formula's that account for body size, and so the general guidelines are 5.5cm. So I'm sure many Dr's will simply go by that, but some of the top Hospitals do use formulas that account for body size: Cleveland Clinic, Yale, and I believe Cedars Sinai off the top of my head. Probably many others. If I were you I would look for a good Cardio-Thoracic surgeon, possibly at Duke as that is a top hospital within a few hours of you, and I would keep looking until you find one that takes body size into account.

Dr Elefteriades described the criteria as follows back in 2010, here:
http://content.onlinejacc.org/article.aspx?articleid=1140497

Now, it may be questioned whether 1 set of size criteria for surgical intervention can be applied to all individuals, regardless of body size. In fact, it is indeed appropriate to make body size corrections, especially for very small or very large individuals. Our data now have become so robust that we have been able to determine appropriate criteria for interventions based on an aortic size index, which takes into account both aneurysm size and the patient’s body surface area (Fig. 12).

I believe that his formula is similar if not the same to that in the link posted previously.

 

[Agian]

Better to be safe than sorry. Do your research, and all that, but this Dr E sounds like a one man band. Just saying.

 

[cldlhd]

Hi, I think that I have pasted that calculator as well. In the American College of Cardiology guidelines, it says something to the effect that there is not enough information to use the formula's that account for body size, and so the general guidelines are 5.5cm. So I'm sure many Dr's will simply go by that, but some of the top Hospitals do use formulas that account for body size: Cleveland Clinic, Yale, and I believe Cedars Sinai off the top of my head. Probably many others. If I were you I would look for a good Cardio-Thoracic surgeon, possibly at Duke as that is a top hospital within a few hours of you, and I would keep looking until you find one that takes body size into account.

Dr Elefteriades described the criteria as follows back in 2010, here:
http://content.onlinejacc.org/article.aspx?articleid=1140497

I believe that his formula is similar if not the same to that in the link posted previously.

Body size is one thing but activity level is another. My surgeon also took into account what I di for a living and how physically active I am in my personal life. In other words how likely would I be to be a ******* and pick up something too heavy.

 

[Dan Zulu]

I had my root replaced when MRI estimated 4.9. I was 6'0" 190 at the time. No bav, no connective tissue disorder. Surgeon said it was measured as 5.0 during surgery and was ready to come out. I didn't want to delay the inevitable operation.

 

[HopefulHeart]

Thank you to all of you for your replies. You all have confirmed what I'm starting to believe is a fact......and that is that the Cardiologist's don't seem to understand aortic aneurysms like the surgeons do. They all seem to (and I realize I should not say all, but most probably) subscribe to this cookie cutter treatment plan of wait and medicate. I have been empowered over the course of the last 10 days by all the information you all on this site have provided me. I've also been educated. I will now be seeking opinions from surgeons that take into account the body size factor. I have requested all my cardiac medical records. They are on their way to my house as we speak. I will then be obtaining a second opinion from Cleveland Clinic using my records. I may also seek an opinion from Duke. Although to be honest, I think Cleveland Clinic would be the only place I'd feel comfortable closing my eyes for the surgery. And I say that because my uncle went to a small hospital in Florida for valve surgery (a hospital that did not do many of those procedures) and unfortunately they screwed up his surgery (surgery was supposed to only take 3-4 hours and it took 9 hours). He died as a result.

 

[cldlhd]

A high volume hosital is preferable. I assume Duke qualifies. I had mine at HUP ( hospital of the University of Pennsylvania) which is also. I'm not sure how many people are truly 'comfortable' at that time but I get what you're saying,

 

[AZ Don]

Cleveland Clinic is the top hospital in the US for Cardiology and Heart Surgery, and based on the link posted earlier it sounds like they subscribe to the body size criteria, but Duke is #5: http://health.usnews.com/best-hospitals/rankings/cardiology-and-heart-surgery
You can't do better than Cleveland Clinic but Duke is a good 2nd choice if you don't want to travel so far. A good source to find Dr's is: https://www.castleconnolly.com/
They charge a few dollars a month and you can cancel after a month. Lars Svensson is the director of the Cleveland Clinic's aorta center and probably considered the top Doctor in the world for this.
http://my.clevelandclinic.org/staff_directory/staff_display?doctorid=4359

 

[HopefulHeart]

AZ Don...thanks for posting the castleconnolly website info. I'm going to sign up. I'm hoping I can get more detailed information on other Dr's in my area because I may need to find a new Cardiologist. I've been with my current Cardiologist since I was diagnosed back in 2006 and so far I've been pleased with the care I've received. I'll know for sure as to where he stands after my follow-up appointment on Oct. 5th. But I'm getting the feeling that he feels 5.5 cm is the magic number for everyone and I definitely do not agree with that after all I've read. And with an ascending aortic aneurysm, I can't afford to waste time with a Dr. that does not agree with me.

 

[valdab]

I shall follow your thoughts with interest - my aneurysm is 4.7/4.8cm, BAV with no other issues. I have recently changed specialists and now see a highly respected UK Cardiologist who is also a surgeon. He is of the opinion that while the (current) measurements are stable, he would rather not intervene. However my heigh (5'.7") and bodyweight puts me just over the cusp of intervention. I am also considering the PEARS procedure which will spare my (functioning) valve; one of the reasons I changed specialists was because my current surgeon is a pioneer of this procedure.

My measurements have not changed significantly in the 7 years since diagnosis - 1 - 2 mm (which I understand can be attributed to margin of error). Measurements were done by MRI. Most of the time I manage to remain fairly sanguine about the situation, then I read a post like yours and the stress and panic comes flooding back

 

[HopefulHeart]

Sorry valdab....didn't mean to cause you stress. All along I had been thinking that whatever the guidelines were, I was safe as long as I was under them. First the guidelines said surgery should be considered when your aneurysm reaches 5.0 cm. Then recently, they changed it and said 5.5 cm. I kept thinking "great! Now I have even more time before having to consider surgery". The longer I could go without having to think about surgery, the better and happier I was. Then the bombshell came this past week. Lots of research and evidence that I knew nothing about and had never been told by my cardiologist. That 5.0 or 5.5 cm is not the number for everyone. I was even more shocked to find out that I fell within the category of people (by virtue of my weight and height) that should NOT wait until 5.0 or 5.5 cm. It was like tires screeching in my head. And then I read that top surgeons at cardiac hospitals were in favor of this approach as well and I thought, "how did I not know?" So after laying awake at night and worrying about it, I finally came to my senses and proceeded to gather as much information as possible on this idea of Aortic Size Index and body size relative to aortic size. And that is where all the people on this site came into play offering all their advice and information. I really feel that people on this site are my angels. I would be very lost without them and in a far worse place with my aneurysm.

Keep me updated on what you decide to do. I hope you get the guidance you need from your Dr in order to make the best decision. And I'm glad you saw my post so that you can seek a second opinion if need be. It's hard to be just over the cusp of intervention. In that case another opinion may be helpful.

 

[Ultrarunner]

I shall follow your thoughts with interest - my aneurysm is 4.7/4.8cm, BAV with no other issues. I have recently changed specialists and now see a highly respected UK Cardiologist who is also a surgeon. He is of the opinion that while the (current) measurements are stable, he would rather not intervene. However my heigh (5'.7") and bodyweight puts me just over the cusp of intervention. I am also considering the PEARS procedure which will spare my (functioning) valve; one of the reasons I changed specialists was because my current surgeon is a pioneer of this procedure.

My measurements have not changed significantly in the 7 years since diagnosis - 1 - 2 mm (which I understand can be attributed to margin of error). Measurements were done by MRI. Most of the time I manage to remain fairly sanguine about the situation, then I read a post like yours and the stress and panic comes flooding back

My situation is similar. BAV, ascending aorta 4.7/4.8, and a surgeon who specializes in valave sparing. I'm a little taller, at 5' 11". What puzzles me is that my aorta went from 4.0 to 4.7 in 7 years but the contrast CT measurement I just had done showed no change from last year. I just assumed it would continue to grow by 1 mm per year. And you've been at 4.7/4.8 for seven years.

So my assumption of requiring surgery in the next few years seems unfounded. I've been easing into semi-retirement a little early, thinking that I needed to reduce my stress level and also to prepare for a lengthy post-surgical recovery. Maybe I'm being too paranoid.

 

[valdab]

No apologies needed Hopeful Heart - it's the name of the game. Stick your head in the sand and go on oblivious or try to keep informed (all the while trying not to let it take over your life) and go into panic mode from time to time. My previous consultant sent me to see a surgeon when I was first diagnosed (at 4.7 / 4.7cm) and he asked me what I wanted to do. I asked him what he would do if it was wife/sister/mother etc. He said he would wait. So I have two opinions albeit some six years apart; both suggesting I wait.

I supposed I am inclined to stick with the chap at Royal Brompton as he is one of the few people who perform the PEARS procedure (the first surgeon, mentioned above wanted to replace the valve as well).

Ultrarunner - I don't know why yours should grow so suddenly then take a break. I also do my best to keep stress down and not overdo things; fortunately my blood pressure is naturally on the low side and I've never been a crazy exercise fanatic. Brisk walking with two lively golden retrievers followed by a swim; I've decided at my age that should be enough

 

[dornole]

I wonder if this is a case of "I have a hammer, therefore your problem is a nail." Meaning, cardiologists have medications so they say medicate; surgeons have scalpels so they say operate.

 

[valdab]

I wonder if this is a case of "I have a hammer, therefore your problem is a nail." Meaning, cardiologists have medications so they say medicate; surgeons have scalpels so they say operate.

This is always in the back of my mind, if I'm being perfectly honest. In the same way I wonder about dentists and car mechanics and plumbers earnestly telling me I have vital work that needs doing. They all have mortgages to pay after all. It's cynical and doubtless grossly unfair but nevertheless, I can't quite shuffle it off.