New member: Aortic Anuyerism Questions

[Guest]

hi, I’m 29 with BAV and after a ct scan was told I have a 3.6 aortic Root and the “biggest part of the aorta” is a 4.0.

Can someone explain what that means? She said that’s right on the edge of normal and that it’s not yet considered anuyerism, only dialated. I always knew I’d need my BAV repaired, and that sometimes the Root gets fixed too, but does this now mean I’ll need two parts of my Root fixed? Or is common for people who get BAV repaired to have a couple parts of their aorta repaired?

My cardio says there’s a chance these never get worse/bad enough to need intervention, is that true?

Do do I need to adjust my working out/excercise at all?

I assume their is not a threat for dissection/rupture at this point? And that if that were a concern it woulda came up in the ct scan or other tests?

lastly, how does getting the aorta repaired along with BAV change the surgery statistics? Hoping it’s still confidently performed with very very low mortality rate. Also hoping my life expectancy doesn’t change. Just wanna know theirs still a chance I live to see 84 like my grandpa lol!

sorry for the ramble and anxiety, just looking for some encouragement. My family really wants me to move on and get back to living without fear.

 

[DJM 18]

Some comments based on the extensive research I have done, although I am by NO means an expert and most certainly not a doctor.

- the answer to your first series of question is essentially yes. BAV is both a condition of the valve and the aorta. Some people do not have an issue with their aorta while in others it can affect the root and/or the ascending aorta. What they need to do eventually it is up to your team of doctors based on how things progress through time.

- I would think what your doctor said is true regarding the progression and the most important thing is that you have realized you have this condition and are in the care of a good cardiologist who you trust that will help you monitor this as he deems necessary. This is after all a marathon so make sure you have a good team of doctors that have relevant experience and with whom you like working.

- There may be some need to modify physical activity (heavy lifting primarily) but this generally happens once it has further progressed. Again, your doctor can help you through this although some doctors tend to be overly conservative. There are some posts here including a recent article about an athlete with BAV who built a career on teaching people how to train in a manner that does not put so much stress on your aorta.

- Note - It would be important to rule out a history of dissection in your family and/or some form of connective tissue disorder.

- Lastly, the aorta is not usually repaired (it was done in the past some I think) but rather replaced with a composite graft. This is a very common procedure at the time of valve surgery (also called the Bentall) and the outcomes, especially in healthy BAV patients, are excellent with pretty much normal life expectancy as documented in recent medical reports on this topic. I recently posted on Yale's 25 years of experience and there is also a specific piece by Etz on results from the Bentall for BAV. They may decide to repair the valve (which is more and more common) or they may need to replace it when the time comes, if ever. Again, there are so many moving pieces that it is hard to think of outcomes as you never really know what may be the eventual indication for surgery if it comes to that: valve (regurgitation or stenosis) or aortic aneurysm.

But in summary...

- It is great that you are aware of this condition and in the hands of a good doctor

- You should lead a VERY long and amazing life just like many people on this forum or arnold Schwarzenegger or aaron boone or MANY others...after all this affects 1% to 2% of the population and most people do not even know they have this condition.

- If you need surgery the options and outcomes TODAY are excellent

- You have found an incredible community of support


Below is a video on the normal life of a BAV patient, in this case an elite tri-athlete.
Colorado Tri-athlete Receives Life-Saving Heart Surgery at Baylor Dallas

https://www.youtube.com/watch?v=kiMOO5nSDEk

 

[NDNMD]

It seems very similar to my situation. Mine is 3.9--also at the top end of "normal" for my size. Mine was discovered last year (I am 37). I see a cadiologist now, who did a cardiac MRI to get a better picture (and found some noncompaction, which they don't understand well).

Basically, with BAV, we have a tendency for a series of complications related to the aorta and aortic valve:

- Aortic expansion (dilation leads to aneurism)
- Aortic dissection/rupture (severe and life-threatening condition)
- Aortic stenosis (calcification and thickening that restricts blood flow)
- Aortic valve regurgitation (valve leaking)

These conditions can all get worse or more likely as time goes on. Many are related. For example, aortic expansion increases the likelihood of dissection.


My cardiologist put me in losartan because it lowers blood pressure (which makes dissection less likely) and also may slow or halt aortic expansion. (It has been found to slow or halt aortic expansion for those with Marfand's syndrome, a related disease.) I also eat a ketogenic diet for other conditions, but this also reduces the likelihood of calcification and stenosis. I currently have no stenosis and extremely mild regurgitation. My cardiologist schedules yearly echocardiograms for me to monitor the expansion and valve. He also will prescribe a cardiac MRI every 3 years to get a better picture of things.

The limitations we face are all based on risk. With our size of aorta, the risk is much lower. However my cardiologist recommended that I not lift heavy weights. He says I should stay in the 8-12 rep range when lifting. Lifting weights such that you have to strain (measured by whether you need to hold your breathe to perform the exercise) can cause blood pressure to increase in the aorta, which increases the risk of dissection. Surgery to correct the valve or the aorta is not recommended until the risk of dissection is severe or the valve is severely malfunctioning. Surgery carries somewhat significant risk and a risk tail. That is, it is open-heart surgery. This is a big stress on the body. It has risk for the procedure itself. Also, the valve can be replaced with a mechanical or animal valve. Animal valves only last 10ish years before needing to be replaced AGAIN. Mechanical valves last a lifetime, but they carry a risk of clotting, so you need to take blood-thinners or medicines that inhibit blood clotting--which has a whole load of other side effects. With either replacement valve, the risk of stroke increases, though more significantly with a mechanical valve.

 

[DJM 18]

[h=1]This Trainer Was Warned His Heart Could ‘Explode’ If He Lifted Over 50 Pounds[/h] [h=2]​Find out how he stays fit—and inspires other guys to do the same[/h] https://www.menshealth.com/health/dan-geraci-and-bicuspid-aortic-valve-disease/slide/1


How the BAVD Diagnosis Can Be a Life-Changer
The doctor who diagnosed Geraci at 18 told him he’d have to avoid all strenuous activity, which meant football and weight lifting were off limits. Geraci couldn’t do anything to resurrect his football career, but he wasn’t ready to give up weights.
So he enrolled at the University of Michigan to study exercise science, worked as a strength coach for the football team, and dug into his disease.
“I learned that it’s not the weight that’s the problem,” Geraci said. “It’s the dangerous spike in blood pressure that comes from holding your breath or bearing down during exertion.”
He’s right—the reason strenuous activities are dangerous for people with BAVD is that they can trigger a sudden jump in blood pressure or heart rate, which strains the heart, says cardiologist Milind Desai, M.D., medical director of the Bicuspid Aortic Valve Center at the Cleveland Clinic.
“You can’t be doing cocaine and Red Bull with BAVD, and going to the gym and doing a 300 pound bench press isn’t a good idea, either,” he says.
While in college, Geraci saw a new doctor, made his case for lifting, and got cleared to hit the weights with the promise that he wouldn’t employ the Valsalva maneuver—the technical term for that forced exhalation against a closed airway, also known as grunting. (If you are cleared to exercise by your doctor, it’s still important to avoid any activity that’s going to make you bear down and grunt, says Dr. Desai.)
Geraci eased into lifting with a new game plan: He’d stick to higher reps, lower weights, and focus on keeping his breath easy and continuous so that his blood pressure would stay stable.
Geraci now has a master’s in exercise physiology and owns a gym in Chicago called Hardpressed, where he teaches his steady breathing method to all of his clients—even those with healthy hearts.
“The idea is to move the weights slowly so you’re always in control, as opposed to the violent pushing and pulling you might see in Olympic weight lifting,” he says.
While his one-rep max might be out of question, Geraci’s fitness hasn’t suffered. Over the years, as he stayed healthy, he’s been able to work up to ten reps of 200 pounds on the bench, or 15 reps of 550 on the leg press—more than enough weight to build and maintain strength without overly stressing his heart.

 

[cldlhd]

hi, I’m 29 with BAV and after a ct scan was told I have a 3.6 aortic Root and the “biggest part of the aorta” is a 4.0.

Can someone explain what that means? She said that’s right on the edge of normal and that it’s not yet considered anuyerism, only dialated. I always knew I’d need my BAV repaired, and that sometimes the Root gets fixed too, but does this now mean I’ll need two parts of my Root fixed? Or is common for people who get BAV repaired to have a couple parts of their aorta repaired?

My cardio says there’s a chance these never get worse/bad enough to need intervention, is that true?

Do do I need to adjust my working out/excercise at all?

I assume their is not a threat for dissection/rupture at this point? And that if that were a concern it woulda came up in the ct scan or other tests?

lastly, how does getting the aorta repaired along with BAV change the surgery statistics? Hoping it’s still confidently performed with very very low mortality rate. Also hoping my life expectancy doesn’t change. Just wanna know theirs still a chance I live to see 84 like my grandpa lol!

sorry for the ramble and anxiety, just looking for some encouragement. My family really wants me to move on and get back to living without fear.

I had my BAV repaired 3 years ago and my aortic root and ascending aneurysm replaced with a graft. The anxiety about it is normal and nothing to apologize for.

 

[wynnn]

hi, I’m 29 with BAV and after a ct scan was told I have a 3.6 aortic Root and the “biggest part of the aorta” is a 4.0.

Can someone explain what that means? She said that’s right on the edge of normal and that it’s not yet considered anuyerism, only dialated. I always knew I’d need my BAV repaired, and that sometimes the Root gets fixed too, but does this now mean I’ll need two parts of my Root fixed? Or is common for people who get BAV repaired to have a couple parts of their aorta repaired?

My cardio says there’s a chance these never get worse/bad enough to need intervention, is that true?

Do do I need to adjust my working out/excercise at all?

I assume their is not a threat for dissection/rupture at this point? And that if that were a concern it woulda came up in the ct scan or other tests?

lastly, how does getting the aorta repaired along with BAV change the surgery statistics? Hoping it’s still confidently performed with very very low mortality rate. Also hoping my life expectancy doesn’t change. Just wanna know theirs still a chance I live to see 84 like my grandpa lol!

sorry for the ramble and anxiety, just looking for some encouragement. My family really wants me to move on and get back to living without fear.

Hello,

welcome to the forum.
I have been lurking around here for a couple of months and found this forum very useful and encouraging.
So here's my first post

It seem like we are in some what similar situations. I discovered about my BAV in Jan 2018 (Age: 28). My root is 3.7cm, which is considered the upper limit of normal. I have been in a state of anxiety for the past 1.5 months.

The following is what i have gathered from various sources (websites, this forum, my cardiologist and GP):

1. Life expectancy: People with BAV are expected to have normal life expectancy
2. Mortality rate: AVR has came a long way and mortality rate is pretty low. Here are some stats from Cleveland clinic https://my.clevelandclinic.org/depar...-valve-disease average . Based on my reading, age and health condition of a patient prior to surgery is an important factor in mortality rate. If you are young and healthy, your chances are good.

With regards to anxiety, it is pretty normal to experience that. After all it is a major (but temporary) setback in your life. Head over to the Anniversary sub-forum and you will see there are many veterans with successful surgeries and leading a fulfilling post surgery life. I hope that will give you some encouragement and calm your anxiety level.

Best wishes,
Wynn

 

[DJM 18]

It is more than normal to feel anxiety with this condition and it is important to find ways to work through this anxiety, whatever works best for you but it could be family, yoga, meditation, exercise or someone to talk to. And it is also helpful to understand that IF it comes to surgery the outcomes are very good. Here is a recent study from Duke in 336 low risk (age <75 elective procedure) patients with BAV aortopathy and an average age of 53.4 years. The 30 day in hospital outcomes were excellent, no patient died and only one (of 336 total) suffered a stroke.

From the report..

"Conclusions:"

"Elective repair of BAV aortopathy can be achieved with excellent early and long-term outcomes in high volume aortic centers."


http://www.onlinejacc.org/content/accj/69/11_Supplement/1925.full.pdf


Objective:

In regard to bicuspid aortic valve (BAV) aortopathy, 2016 ACC/AHA guideline clarifications suggest replacement at >4.5cm in

patients undergoing AVR and >5.0cm for asymptomatic patients at low surgical risk (<4%) in experienced centers (Class IIa). The purpose

of this study was to report outcomes of proximal aortic replacement in low-risk BAV patients in accordance with these guidelines.

Methods:

Of 979 patients undergoing proximal aortic repair between 1/2005 and 9/2016 at a single high-volume referral aortic center, 389

(39.7%) had BAV aortopathy. N=336 were considered low risk as defined by age <75 and elective procedure status. Primary outcomes

included 30-day/in-hospital results, long term survival and freedom from reoperation.

Results:

Demographics and outcomes are listed in the Table. Mean aortic diameter at time of operation was 5.3 ± 0.6 cm. The incidences

of perioperative death, stroke, and new dialysis dependent renal failure were 0%, 0.3%, and 0%, respectively. At a mean follow up of 41

months, proximal aortic reoperation was required in 2 of 336 patients (0.6%). Kaplan Meier estimates of overall survival at 10 years was

90.7%.

Conclusions:

Elective repair of BAV aortopathy can be achieved with excellent early and long-term outcomes in high volume aortic centers.

 

[DJM 18]

Lastly, here is a good story on the Head Coach of the Chicago Bulls who was born with a bicuspid valve and had an aneurysm operated in 2005 and then a follow up surgery to have his valve replaced in 2015. It is quite good except for the heavy marketing of the On-X valve.


Chicago Bulls Coach, Fred Hoiberg, Opens Up About His Heart Valve Surgery

Posted by Adam Pick, January 13, 2016

Imagine your childhood dream of becoming a professional basketball player has come true. Imagine you are leading the NBA in 3-point shooting. Imagine you are in the prime of your career. Then… Imagine you are unexpectedly diagnosed with a life-threatening aortic aneurysm due to a bicuspid aortic valve.

What would you do? How would you handle it? What would you tell your family? What would you tell your team? Which valve replacement would you chose? This is the story of Fred Hoiberg…

My name is Fred Hoiberg. I’m from Chicago, Illinois, I’m the Head Coach for the Chicago Bulls. I’ve spent most of my life in Ames, Iowa. I went off and played ten years in the NBA. I spent four years as a front office executive. I was with the Minnesota Timberwolves; went back to Ames for five years, and this is my first year here in Chicago.

I was really lucky. I had no symptoms at all. I knew I had an abnormal valve. I knew I was born with a bicuspid aortic valve. I found out about that in college. I’m in Minnesota and our team doctor, when the season was over, recommended that I go down to the Mayo Clinic, just to be sure that everything was okay.

I was diagnosed with an aortic aneurysm back in 2005. That was due to the bicuspid aortic valve. Talk about a kick in the gut. I was 32 years old. I was in the prime of my career. I’d just led the NBA in three-point shooting. I basically was playing on the court with a ticking time bomb in my chest. It was very emotional. I guess the first thing you go through is denial. I’ve got to get a second opinion here; it can’t be true. I don’t feel anything, but once we talked to other doctors, yeah, I needed that surgery.

Dr. Gerdisch: In the general population, about 1.5% of the people have a bicuspid aortic valve, and many of them will go on to require some treatment for it. Coach Hoiberg had a couple of complications in his first operation.

Fred Hoiberg: I still thought about playing. I wanted to go out on my own terms. I did everything possible to get myself back in great shape, but I had four young kids and I just decided that it was time to move on to the next phase of my life. This last year, it really took a turn for the worse and the doctor recommended in December I should really consider having the valve replacement surgery.

Dr. Gerdisch: In his first operation, they tried to spare the valve. Keep the valve leaflets and just replace the aorta around it, then after several years the valve failed, and he were not to require another operation.

Coach Fred Hoiberg: I tried to talk to as many people as I could that had been through that operation. People that had had porcine valve, also people that had gone with the mechanical route. The thing that was most encouraging to me about the mechanical valve was that it was hopefully going to be my last surgery.

Dr. Gerdisch: Even if this was his first operation at 42, he still would be looking at re-operation, potentially another after that, and maybe even another after that. Tissue valves last longer in older people and less in younger people, so that next operation could be coming quite soon.

Coach Fred Hoiberg: I didn’t want to put my family through the worry and the concern. It’s tough on the family when you’re in the operating room with surgery that complicated.

Dr. Gerdisch: The On-X valve is a genuine innovation, although it’s been around for 16 years, and it’s the only mechanical valve that I’ve implanted during the last 14. We demonstrated in a multiyear study that the valve could be managed at a much lower dose of blood thinner, of Warfarin. As a result, there’s a dramatic significant reduction in the complications related to the valve compared to any other valve, any other mechanical valve and any tissue valve.

Coach Fred Hoiberg: I couldn’t be happier with everything involved. First of all, getting the mechanical valve and second getting the On-X valve. The way I feel now, after the valve replacement, I feel like I did when I was playing. I feel great, and I’m thankful I got the valve that I did.

Dr. Gerdisch: The innovations of the On-X valve, its performance characteristics, its low risks, are very, very impactful because he’s an athlete. He needs to be able to call upon his cardiovascular system to function optimally. Characteristics of the valve allow for that, and it allows for that permanently. That won’t change.

Coach Fred Hoiberg: The big thing going into the surgery with the tissue versus the mechanical valve was I didn’t want the re-operation. Having to go through and be on the Warfarin. Now I’ve been on it for, I guess going on four months, it’s really not that big a deal.

Dr. Gerdisch: The On-X valve really represents our finest convergence of technologies. The On-X valve provides us the opportunity to avoid re-operation. It gives us the opportunity to manage the patient at a much lower dose of blood thinner, which dramatically lowers the complications. That is following an FDA-approved trial that demonstrated that we could do that and do that well.

Coach Fred Hoiberg: I think the only limitations really that I have is they don’t want me out playing football, things like that. I can still go out and shoot with our guys. I’m able to do any cardio that I want. My three boys, one in high school, two in middle school, I can continue to be very active with them, and really that’s what it’s all about.

Dr. Gerdisch: Coach Hoiberg is doing exceptionally well, as he goes into his first season as Head Coach for the Chicago Bulls. He’s going to be able to keep up with his team and keep up with his players and enjoy himself. I wish him the best of luck!

Fred Hoiberg: People that are about to go into a surgery, the big thing is being prepared. Become an expert on the heart.

 

[Agian]

I have an on-x. I believe the only advantage is the pannus guard, but this comes at the expense of a smaller opening. This is ok with the bigger valves. I simply don't buy the lower INR gimmick.

 

[gsl1956]

I have a 4.6cm ascending aortic aneurysm, and the aortic surgeons at Weill Cornell I consulted said recent studies by Dr. Elefteriades at Yale shows that the normal adult proximal ascending aorta (not the root) averages from 3cm in size, depending on gender and height/BSA. So he would not say a 4.0cm ascending aorta is normal size, it’s just not aneurysmal. My aortic surgeon would classify 4.0cm diameter as a mild dilitation or enlargement. Nothing to be anxious about but should monitor periodically for growth rate.

My TAA grew by 0.3cm in one year and went from being considered a moderate dilitation to an aneurysm (50% larger than normal diameter).

It varies from patient to patient on the natural morphology of the aorta and of course the developing pathology as such matters as connective tissue disorders, genetic syndromes, family history, etc impact the evolution of aneurysms.

 

[dixitworld]

Hi All,

Nice to see such a positive energy here.

I have my AVR done in 2010 due to bicuspid aortic valve leakage and that time my ascending aorta was 3.9 cm and was not repaired and now i am diagnosed with Ascending Aorta aneurysm with 5.1 cm. Doctors are recommending for surgery . So this is going to be mine second open heart surgery. So i feel myself as one of the most unluckiest lot on earth. I have my kaiser insurance and currently Dr Mario Pompili from Kaiser Santa Clara and Vicken Melikian from Kaiser SFO are assigned as surgeons to me.

I was also checking with Stanford and met Dr. Craig Miller who had much name for aortic surgeries but found him too much old , he seems to be 72 years plus with shaky hands little bit

I am so much confused now whom to chose. Is Kaiser (Dr. Pompili and Dr . Melikian) good enough for me to do second surgery or should i consider Stanford brand name for this complex surgery.

Feedback from all members are welcomed please. I have some 5 days to make a decision.