Recently diagnosed bicuspid + dilated ascending aorta

[Guest]

Hi everybody,

I'm a 37 years old Spaniard living in the UK (apologies in advanced for my English grammar and usage) that got THE news a couple of weeks ago. I has always been extremely active and sporty, from TaeKwonDo balck belt to Marathon runner (PB 3h31m) having finished my last mountain race (30 km 1550 D+-) the week before the diagnosed which I found very ironic. Truth be said, I was starting to feel a decrease on my performance since March this year and a mild chest discomfort that make me think that been checked was a good idea, and surely it was!
Anyway, I spent my days of mourning, sadness and cry and thinking feeling like the most miserable man on Earth till I found this forum. Wow! You really make me change the way I see all this, all your stories, how you recovered and carry on with your lives! And also very interested in the sporty people my age that went through it and now are even stronger and fitter just months after surgery. People in this forum, honestly, you change lives.

Thing is, I have one of those bicuspid valves (mild stenosis and mild regurgitation and the CT scan results below. When they told me about the 5.3 cm I totally sh**t my pants as everywhere I read the line is the sand for surgery is 5. But I have been reassured by 3 cardiologists (NHS, Private in UK and Private in Spain) that I’m not yet ready for surgery, that I should wait. According to them surgery WILL come (that’s a certainty) but it can be years. They also insisted that, as long as I stop doing weights at the gym, I can continue with my cardio training (running, cycling) as long as I don’t go crazy. I have set my top HR at 145-155 and work always below that.

Obviously, I’m a bit scared every time I exercise but the “chest time bomb” feeling is fading away a bit. As this forum seems to be an amazing pool of knowledge, I was wondering if you can have a look at my CT results and let me know why you reckon the cardios seen so sure that I’m out of the danger zone or surgery zone at the moment. Also, if someone has been in a similar situation, do you reckon I could keep my valve and just have the aorta replaced? Or bicuspid valves have always the need to be replaced? So many questions, sorry!

Anyway, any comment will he highly welcomed.

Calcium Score: 0.

Dominance: Right dominant.

Left mainstem: Very short and normal.

LAD: Normal.

D1: Normal.

Circumflex artery: Normal.

OM1: Normal.

Right coronary artery: Normal.

Other cardiac structures: The aortic valve appears abnormal and is probably bicuspid. The aortic root and ascending aorta are dilated, sinus of Valsalva measures 4.9cm, ascending aorta measures up to 5.3cm, arch of aorta is normal at 2.7cm. There is no evidence of any coarctation and other cardiac structures are normal.

Conclusions

Normal coronary arteries, bicuspid aortic valve with significantly dilated aortic root and ascending aorta.

 

[honeybunny]

I'm not familiar with what all the numbers mean; I didn't really pay attention to mine because I had surgery just a few months after my BAV with severe stenosis was diagnosed. But I want to welcome you to this awesome site. The members are so helpful. The help I received here took away much of my fear and I'm sure you will experience the same.

 

[Paleowoman]

Hi - welcome from a forum member in the UK ! I had a CT scan prior to surgery to replace my bicuspid aortic valve. I can see from your results that your coronary arteries are clear - calcium score 0 so no atherosclerosis. But I don't know what the aorta figures mean. If three cardiologists tell you that now is not time for surgery and have given you advice about exercise, have they told you what measurements they would be looking for which would indicate the time for surgery ? Are you going to have follow up exhocardiograms ? Bicuspid valves don't always need to be replaced, it's if the stenosis or regurgitation reaches critical levels. I hope some of the members here who have experience of dilated aortic root and ascending aorta cah help.

 

[Catie]

They may well approach things differently in Europe than America. I wonder whether the threshold they are using is 5.5 cm. Are you a tall guy? There is a body size ratio that many surgeons, at least in the US, take into account.

I'm 5'4" and at the advice of three surgeons will have surgery for my aortic aneurysm, root and valve next month. 4.7-4.9 cm at largest spot. I've been told my risk of dissecting is higher than the surgical risks.

 

[AZ Don]

Welcome,
In the US, the guidelines used to suggest surgical intervention at 5.5cm generally, and at 5.0 cm for those with Marfan's, connective tissue disorder, or a Bicuspid Aortic valve. A couple years ago the criteria was revised to exclude Bicuspid Aortic valve from the 5.0 criteria as the risk of early dissection has shown to be less for those with BAV than that for those with Marfan's or connective tissue disorders. My aneurysm was found to be 5.1cm in 2013 when the older guidelines were in effect so I had surgery asap. You can calculate the body size ratio mentioned above, here:
http://valleyheartandvascular.com/Thoracic-Aneurysm-Program/Calculate-Your-Relative-Aortic-Size.aspx.
If you are smaller than average it will likely recommend surgery before 5.5cm. It looks like the calculator is still using the old guidelines for Bicuspid Aortic Valve.

A couple things I picked up from researching aortic aneurysms:
- once they are past 4.7cm, continued enlargement is considered inevitable.
- there have been some anecdotal reports that taking Losartan has stopped further growth. This is currently being researched. You may want to discuss this with your Dr.
- Aortic aneurysms can dissect below the surgical guidelines, though the risk increases significantly above the surgical guidelines.

Before I realized I was already a candidate for surgery, my perspective was that there was some risk of dissection every year that I waited for surgery, then at the end of that there was the risk of surgery. If I did not wait years for surgery I would therefore have a lower cumulative risk.

I too had a bicuspid aortic valve with no stenosis and trivial regurgitation, so I chose to spare my valve rather than replace it. Now 3 years post op I have moderate regurgitation and the 50% estimated chance of needing another surgery is now much closer to 100% ... though I don't need it yet. I did have the option to have my valve replaced. Since you have stenosis and regurgitation, although mild, you may or may not have the option to have your valve spared. Something to talk about with your Dr's. I believe that sparing the valve is actually the more complicated surgery, so if this is something you want to do, you should look to have it done at one of the better surgical centers ... not a bad idea even if you have it replaced.

 

[Ultrarunner]

What led you to use 145-155 as maximum safe heart rate? Neither my cardiologist or surgeon would give me a number. I chose 140 as my max, but I do go over occasionally. I stopped running races but still do a daily double "Grouse Grind", which is a popular local climb. That means 1,600 meters per day of vertical gain. That keeps my resting BP at 90 over 55, but I do think about dissection every time I do the climb.

 

[cldlhd]

Hi everybody,

I'm a 37 years old Spaniard living in the UK (apologies in advanced for my English grammar and usage) that got THE news a couple of weeks ago. I has always been extremely active and sporty, from TaeKwonDo balck belt to Marathon runner (PB 3h31m) having finished my last mountain race (30 km 1550 D+-) the week before the diagnosed which I found very ironic. Truth be said, I was starting to feel a decrease on my performance since March this year and a mild chest discomfort that make me think that been checked was a good idea, and surely it was!
Anyway, I spent my days of mourning, sadness and cry and thinking feeling like the most miserable man on Earth till I found this forum. Wow! You really make me change the way I see all this, all your stories, how you recovered and carry on with your lives! And also very interested in the sporty people my age that went through it and now are even stronger and fitter just months after surgery. People in this forum, honestly, you change lives.

Thing is, I have one of those bicuspid valves (mild stenosis and mild regurgitation and the CT scan results below. When they told me about the 5.3 cm I totally sh**t my pants as everywhere I read the line is the sand for surgery is 5. But I have been reassured by 3 cardiologists (NHS, Private in UK and Private in Spain) that I’m not yet ready for surgery, that I should wait. According to them surgery WILL come (that’s a certainty) but it can be years. They also insisted that, as long as I stop doing weights at the gym, I can continue with my cardio training (running, cycling) as long as I don’t go crazy. I have set my top HR at 145-155 and work always below that.

Obviously, I’m a bit scared every time I exercise but the “chest time bomb” feeling is fading away a bit. As this forum seems to be an amazing pool of knowledge, I was wondering if you can have a look at my CT results and let me know why you reckon the cardios seen so sure that I’m out of the danger zone or surgery zone at the moment. Also, if someone has been in a similar situation, do you reckon I could keep my valve and just have the aorta replaced? Or bicuspid valves have always the need to be replaced? So many questions, sorry!

Anyway, any comment will he highly welcomed.

Calcium Score: 0.

Dominance: Right dominant.

Left mainstem: Very short and normal.

LAD: Normal.

D1: Normal.

Circumflex artery: Normal.

OM1: Normal.

Right coronary artery: Normal.

Other cardiac structures: The aortic valve appears abnormal and is probably bicuspid. The aortic root and ascending aorta are dilated, sinus of Valsalva measures 4.9cm, ascending aorta measures up to 5.3cm, arch of aorta is normal at 2.7cm. There is no evidence of any coarctation and other cardiac structures are normal.

Conclusions

Normal coronary arteries, bicuspid aortic valve with significantly dilated aortic root and ascending aorta.

My bicuspid was repaired and the aortic aneurysm was replaced. It depends , the valve has to have very little or no stenosis and there are other criteria. Also repair is a more complicated surgery so you have to get a surgeon experienced with it assuming your valve is repairable.