Aortic Aneurysm: prognosis, excercise and surgery

[Jmprosser.lab]

Hello all!!

I have relied on this forum many times before and return once again for some advice/guidance.

My new job has given me access to high end health insurance so I’m about to get a new pcp, cardiologist, etc. and I just want to make sure I make the best decision considering my conditions.

I have mild to moderate BAV that my previous cardio said won’t likely require intervention until my 50s or 60s(I’m 27 right now). However I also have two dialated sections of my aorta(3.5, 3.9). This is the element of my condition I need to better understand.

I am choosing between UCLA health and Cedars Sinai—two of this highest rated hospitals for my conditions according to the internet. But I was wondering if anyone in this forum had aneurism repair statistics that compared the two or any information.

Do I need to seek an aorta or aneurysm specialist or is seeing a cardiologist enough?


My cardio made it seem like elective aneurism repair is nothing to lose sleep over. She said it has very very low mortality rates(below 1% often) and no effect on my life expectancy. Is this true? How is the surgery and recovery in comparison to BAV repair? Many places are doing minimally invasive techniques for this, but are they more risky than open heart??

I found on the UCLA Health site that they recommend keeping blood pressure between 105-110, but my cardio had said 120s is fine. Any thoughts on this? I’m usually 120-135..

my cardio said it is possible the aneurisms never grow big enough to require surgery...is that likely? Once I get a read on the dangers of this surgery I’ll be able to better prepare myself mentally.

If i get my BAV and aneurism repaired at the same time, does that make the surgery way more risky?

Is there any risk of aneurysms rupturing or disecting at sizes 3.5, 3.9?

Lastly, I know most say heavy lifting is out the door with an
aortic aneurysms, but my cardio said I have no limitations. Is
it not smart for me to stop lifting now to make sure they don’t grow at a faster rate? Or is that not necessarily proven?

Thanks in advance for the help this stuff can get scary

 

[pellicle]

Hi

let me have a go at a few of these...

I have mild to moderate BAV that my previous cardio said won?t likely require intervention until my 50s or 60s(I?m 27 right now). However I also have two dialated sections of my aorta(3.5, 3.9). This is the element of my condition I need to better understand.

My understanding is that such a dilation is "watch list" material, not "OH MY GOD" material

Do I need to seek an aorta or aneurysm specialist or is seeing a cardiologist enough?

I didn't know there was such a thing, but perhaps in the USA there is. Also, remember this key point:
OPINION: Opinion is all you get from a medical person or from someone like me. Opinions differ even among highly experienced specialists (and I am certainly not that)

My cardio made it seem like elective aneurism repair is nothing to lose sleep over.

well there's a new term for me ... elective aneurysm repair ... funny. Given that they don't even do aneurysm repair when replacing a valve if they think that its "good to go" for a few more years this is something close to farcical.

and anyone who says OHS is "nothing to lose sleep over" seems to be trivalising things so much I'd just go find another cardio and never darken her door again...

She said it has very very low mortality rates(below 1% often) and no effect on my life expectancy. Is this true?

it is .. indeed those are the stats for regular Open Heart Surgery.

How is the surgery and recovery in comparison to BAV repair? Many places are doing minimally invasive techniques for this, but are they more risky than open heart??

its exactly the same surgery. Minimally invasive is bullshit which is used to make the pathalogically anxious feel less anxious (when in fact you shouldn't feel anxious towards regualr OHS

I found on the UCLA Health site that they recommend keeping blood pressure between 105-110, but my cardio had said 120s is fine. Any thoughts on this?

its fluff and more related to people with dangerous levels of dialation

my cardio said it is possible the aneurisms never grow big enough to require surgery...is that likely?

you've got to start using words in a tighter manner, "likely" ...

Lets look at two words: likely and possible

is it possible if you flip a coin you'll get a heads? Yes
is it likely if you flip a coin you'll get a heads? Not to me because its 50:50

is it likely you'll get your number on a roulette wheel? You've got a 1:36 chance ... is it possible? yes.

Once I get a read on the dangers of this surgery I?ll be able to better prepare myself mentally.

you stated them above about 1% ...

If i get my BAV and aneurism repaired at the same time, does that make the surgery way more risky?

not really, but it does make it more complex. It is better to get them done at once simply because its better (less risk) to have one surgery than two (and risks of injury go up (in a non linear manner) on each subsequent surgery ..

Is there any risk of aneurysms rupturing or disecting at sizes 3.5, 3.9?

there is risk of it rupturing in "normal people" ... again, use words tightly, because if nothing else EVERY PROFESSIONAL YOU SPEAK WITH will be using words in the same manner as me.

Lastly, I know most say heavy lifting is out the door with an
aortic aneurysms

define "heavy lifting". The major issue is blood pressure. Instantaneous blood pressure not the "sitting in a chair measured at the office" blood pressure. That can go up massively with stuff like
* squats
* holding your breath and tightly at the same time as squat

the body is a complex system.

 

[pellicle]

something to read:

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5497177/

fully.

But this point stands out in one of your questions:
3. Natural history
Normal aorta grows slowly with age. From the Framingham Heart Study (echo sub-study), aorta diameter increases 0.1 cm per 10 years at the aortic root after the age of 25 . Similar rate of growth is also observed for the tubular portion of the ascending aorta. By the age of 75, normal ascending aorta diameter is approximately 3.6~3.7 cm for women (BSA: 1.95 m2) and 4.1~4.2 cm for men

 

[pellicle]

and
http://www.onlinejacc.org/content/67/6/724/T1

2. Replacement of the ascending aorta is reasonable in patients with BAV undergoing AVR because of severe aortic stenosis or aortic regurgitation when the diameter of the ascending aorta is greater than 4.5 cm (13–17).

For patients with BAV, data are limited with regard to the aortic diameter at which the risk of dissection is high enough to warrant replacement of the ascending aorta at the time of AVR. The risk of progressive aortic dilatation and dissection after AVR in patients with BAV has been the subject of several studies, but definitive data are lacking (13–17).

 

[Jmprosser.lab]

Thanks for all the info!! Made me feel much better. I realize some of the questions come off as stupid and illogical, but I’m working on the psychological part of this stuff.

It it doesn’t sound like this is something I need to spend a ton of time worrying about right now, given intervention may be years down the road. I keep telling myself that with a major surgery you can’t ask for more than 1-2% mortality rate and no effect to life expectancy.

I know that study discusses regular growth of the aorta, but Is there any information on the expected growth rate with someone that has BAV? Just trying to get a read on how fast mine will grow, although I’m sure that’s a loaded question.

 

[Warrick]

FWIW my ascending was 41.2 mm when I had my AVR in 2015 and they were initially going to replace it and then decided to leave it. I have found there are variations in surgical guidelines between countries, some say if replacing the valve and its over 40 mm then repair and others are at the 45mm mark

 

[user 16827]

There are no such things as "stupid questions" if it's in your mind then just ask, that's why the forum exists.
it is understandably an anxious time we have all been there.
Some good advice already given but on the lifting question its not necessarily the weight more the spike in the blood pressure.
running increases blood pressure but a slow build up, whereas lifting ( squatting like pellicle says ) spikes BP especially holding the breath the Valsalva movement .
ask as many stupid questions as you like just get them out there and it will help you feel less anxious, good luck with all.

 

[pellicle]

Hi

Thanks for all the info!! Made me feel much better. I realize some of the questions come off as stupid and illogical, but I’m working on the psychological part of this stuff.

excellent ... I'm glad

also, I understood that "dumb" has been migrated into "stupid" in common parlance. Thats bad as once "dumb" meant "unable to speak" ... so when people said "dumb animals" it mean creatures who could not voice their complaints". ... not stupid ones

so to me when someone says "there should be no no dumb questions" it should mean "there should be no questions which are not given voice"

so ask

It it doesn't sound like this is something I need to spend a ton of time worrying about right now, given intervention may be years down the road.

exactly

I keep telling myself that with a major surgery you can’t ask for more than 1-2% mortality rate and no effect to life expectancy.

correct!

I know that study discusses regular growth of the aorta, but Is there any information on the expected growth rate with someone that has BAV? Just trying to get a read on how fast mine will grow, although I’m sure that’s a loaded question.

well from what I know its a "suck it and see" thing .... meaning that due to pesonal difference it may just be impossible to predict, which is why they advocate regular looks

 

[DJM 18]

There is some good data here on dilatation rate for BAV...which is consistent with what pellicle has emphasized:


Aortic dilatation patterns and rates in adults with bicuspid aortic valves: a comparative study with Marfan syndrome and degenerative aortopathy

http://heart.bmj.com/content/100/2/126
Results At baseline, ascending aortic dilatation was present in 87% of BAV cases: tubular ascending aorta in 60% (irrespective of BAV morphology), and Valsalva sinuses dilatation in 27% (independently linked to typical BAV morphology and male gender (p=0.0001)). After 3.6±1.2 years, the aortic dilatation rate in BAV was higher than expected for the population for all aortic levels (p=0.005) and was maximal at the tubular ascending aorta for BAV (0.42±0.6 mm/year) and DA (0.20±0.3 mm/year), and was maximal at the Valsalva sinuses for MFS (0.49±0.5 mm/year). Maximal aortic dilatation rate was similar between BAV and MFS (p>0.40) and lower in DA (p=0.02) but was heterogeneous in BAV, with 43% of BAV not progressing (vs 20% of MFS, p=0.01). Aortic dilatation rate was not proportionally related to baseline aortic size or BAV type (all models p>0.40).
Conclusions In patients with BAV, tubular ascending aorta dilatation is the most common pattern and exhibits the fastest growing rate, irrespective of valve morphology and function. Dilatation of the Valsalva sinuses is less common and associated with typical BAV morphology and male gender. Aortic dilatation progresses equally fast in BAV (tubular segment) and MFS (Valsalva sinuses), but a significantly higher proportion of BAV patients does not progress at all, irrespective of BAV type. Baseline aortic diameter does not proportionally predict progression rate; systematic follow-up is therefore warranted in patients with BAV.

 

[gsl1956]

Hello all!!


Do I need to seek an aorta or aneurysm specialist or is seeing a cardiologist enough?

I strongly encourage you to research which hospitals in your region are considered a true “aortic center of excellence.”. You may want to consider a general cardiologist that is in practice at that kind of a hospital, and also find out who is the cardiothoracic surgeon(s) that specializes in aortic aneurysms and aortic valve disease. You want an extended team of cardiologists, surgeons, NPs, radiologists, geneticists, etc. that understands this disease and live it every day in their practice. Even in NYC, I encountered general cardiologists who were not up to speed on the latest developments, medical management, protoco;s for Imaging, and were operating with 10-15 year-old assumptions about the pathology of the aorta.

You are young and your aortic root and ascending aorta are only slightly dilated. But every case is unique with different complicating factors - hypertension, genetic syndromes or connective tissue disorders, family history of TAAD, any aortic stenosis or insufficiency, etc. The key is that the approach to the management of aortic disease is evolving and at a rapid pace as more researched is now focused on what was once a poorly studied disease. So be treated by someone who is on the leading edge of this.

A good rule of thumb is to find a center that does at least several hundred aortic procedures a year - they are almost always academic medical centers and usually in large population centers. The top aortic centers off hand are Cleveland Clinic, Mayo, NY Presbyterian, Yale New Haven, Hopkins, Mass General, Duke, U Michigan, and Cedars Sinai/UCLA. It’s amazing the number of aortic patients who look for the right expertise - regardless of location - instead of who is in your backyard. Hundreds of out-of-town aortic patients go to the Cleveland Clinic every year for this precisely for their experience - over 1,200 aortic procedures a year. NY Presbyterian 600 a year!

Good luck. I’m having my valve-spring open ascending aortic aneurysm repair in early August by Dr. Girardi at Weill Cornell in NYC. He has done 1,200 aortic procedures in just the past couple of years with only a 0.2% mortality rate within 30 days of surgery. And 0% mortality on the valve-sparing one in the last 15 years! Only a handful of aortic surgeons have that kind of with track record.

 

[spartangator]

Welcome and glad you're getting good info.