Time to come out of the shadows...

[steviedee]

Hey everyone, I've been lurking on this website for the past couple of months as I found out about my bicuspid aortic valve and ascending aortic aneurysm. Its been a crazy two months but I'm incredibly happy that I came across this website while doing my research.. you all are a blessing! Long story short, I'm a 33 year old male that was in pretty good health until two months ago. My wife and I were at the lake with some friends of ours for a weekend without the kids. The last night at the lake I (while completely sober) began to get really hot and went to the bathroom where the feeling just got worse. I became really dizzy and eventually woke up on the floor of bathroom (gross)... stumbled around a bit and stood back up to gather myself only to pass out again. Went to the ER and found out that I had an aneurysm in my aorta and that I would need to follow up with a cardio to assess the severity. My doctor friend called the cardio on call and he suggested that I go through KU Medical Center's ER to be evaluated more thoroughly... no dissection, just a "mild dilation" and the continued recommendation to follow up with a cardio. Met with my cardiologist and she sent me for an echo where they found my bicuspid aortic valve. Original game plan was to "probably wait years" before having to have this thing replaced because they thought my passing out was due to dehydration (still could have been). However, I only continued to experience more symptoms and another ER visit in the following month. The ER visit lead to a referral to a surgeon to find out that he is recommending surgery at this point due to being symptomatic and my aneurysm being larger than originally thought. Originally the dilation was read to be at 4.3 by the cardiologist but read at 4.7 by the surgeon yesterday. He basically told me the decision was mine but I'm leaning towards going ahead and getting this thing replaced. I haven't been able to completely shake all of my symptoms (lightheadedness and fatigue) since this all started and the anxiety is a killer. I'm looking at probably doing this in about a month and just wanted to say how much I appreciate this site. You guys are great!

Now, for my question, the surgeon yesterday told me that no pre-surgical tests were needed at this point (specifically the angiogram and the TEE). I was surprised by that... anyone else have this experience? He basically told me that "we know what is going on with your valve and your aneurysm. You are young and health otherwise so that stuff isn't needed."

Sorry for the long post...

 

[pellicle]

Hi
And welcome

Hey everyone, I've been lurking on this website for the past couple of months as I found out about my bicuspid aortic valve and ascending aortic aneurysm

. Its been a crazy two months but I'm incredibly happy that I came across this website while doing my research.. you all are a blessing! Long story short, I'm a 33 year old male that was in pretty good health until two months ago. My wife and I were at the lake with some friends of ours for a weekend without the kids. The last night at the lake I (while completely sober) began to get really hot and went to the bathroom where the feeling just got worse. I became really dizzy and eventually woke up on the floor of bathroom (gross)... stumbled around a bit and stood back up to gather myself only to pass out again. Went to the ER and found out that I had an aneurysm in my aorta and that I would need to follow up with a cardio to assess


Sorry for the long post...

Given that aneurysm is not normally associated with those symptoms it may be that it was something like a virus which gave you the illness and triggered the discovery.

Observe and gather data does sound prudent.

 

[Rachel]

Time to come out of the shadows….sounds like a good place for me to jump in – I’ve been a member here for several years but I don’t post much, however seeing that your situation seems to be similar to mine I’ll share my experiences – I found out about my bicuspid and ascending aortic aneurysm after passing out WHILE DRIVING MY CAR!

To this day I really don’t know the cause for passing out – and I really don’t care, important part is that both you and I found out about our heart conditions before it was too late.

My aneurysm was 5.2cm and my valve was failing and I did NOT have an angiogram or a TEE prior to surgery. All I had was a cardiac MRA and a CT scan (which I don’t recommend -– the CT if you can avoid it) I was 45 years old when I found out, 6 months later I had my surgery…. I was a runner – - I’m still a runner... – excellent shape, no other problems….....and I was okay with not having all the other tests.

If you’re in doubt you can always request a second opinion!

 

[steviedee]

Wow! That is scary! I've had that worry since this entire thing started. I felt that he delivered his news of no additional tests with a lot of confidence. It just took me by surprise so I thought I would double check on here. I appreciate the responses!

 

[Jamieann]

I had surgery several months back and also didn't have to do an angiogram or TEE prior to surgery... I guess that's the plus of getting this surgery when you're young and otherwise healthy! They did do several tests such as a carotid ultrasound, CT scan and EKG, but nothing major.

The worst part for me was the anxiety leading up to the surgery. Once the surgery was over I could just focus on healing. best of luck!!

 

[Paleowoman]

I also didn't have an angiogram or TEE. I just had a CT angiogram which isn't invasive, it's just a CT scan with an injection of a dye !

 

[steviedee]

Okay, sounds like no TEE or angiogram is within the norm. Thanks for the feedback! Jamieann, the anxiety is definitely getting to me as well. Ready to get this fixed and start living life again!

 

[ForeverThankful]

I also didn't have a TEE but I did have an angiogram the night before the surgery. I'm 55 and the surgeon said he likes to do an angiogram to check if there are any arteries clogged before he does the surgery that way he will take care of them during the surgery. My arteries were good.

I also did not have an MRI or a CT scan.

I had the surgery 8 weeks after being diagnosed with a BAV and an aneurysm. Not too long of a wait but like Jamieann I found the anxiety leading up to the surgery to be the worst part. I became very distracted in those 8 weeks and unable to focus on anything but the surgery. After the surgery I was relaxed and focused on healing. Best of luck to you!

 

[AZ Don]

I had a catheter angiogram shortly before my surgery. The Dr. that did it said it was to evaluate my cardiac arteries for any blockages so they could be dealt with at the time. I questioned my surgeon about this and he said the real reason for it was so he could have as much information as possible prior to the surgery, looking for blockages was secondary. Symptoms of aortic aneurysm are rare but not unheard of and are a definitive indication for surgery, independent from aneurysm size. If you had no symptoms, surgery would be almost inevitable anyways, though possibly several years away.

 

[epstns]

From what I remember of the protocol, the angiogram (heart cath) is called for when the patient is over 50 years old, to ensure that there are no arterial blockages. If there are blockages, they may opt to perform a bypass while they have your chest open. The historical data shows that absent any symptoms of blockage (like chest pain) they skip the cath among younger patients.

They may, however, be just saying that whatever tests they deem needed will be done once you are admitted to the hospital for surgery. This could be true if they are planning a TEE, as there is no need for recovery time between the procedure and surgery. Of course, they may also be thinking that since they plan to repair both your aneurysm and your valve, the TEE wouldn't tell them anything that they need to know.

 

[Paleowoman]

From what I remember of the protocol, the angiogram (heart cath) is called for when the patient is over 50 years old, to ensure that there are no arterial blockages. If there are blockages, they may opt to perform a bypass while they have your chest open.

Except they can do the same less invasively by doing a CT angiogram which is a CT scan which gives a calcium score and with an injection of dye which shows up the coronary arteries to reveal any blockages. I was given the choice of heart cath angiogram or CT angiogram. The downside of the CT is the radiation, though apparently they don't use too much these days, otherwise it's not invasive like the heart cath and doesn't carry any risks (unless you're worried about radiation or allgergic to the dye which is extremely rare).

 

[Dodger Fan]

Except they can do the same less invasively by doing a CT angiogram which is a CT scan which gives a calcium score and with an injection of dye which shows up the coronary arteries to reveal any blockages. I was given the choice of heart cath angiogram or CT angiogram. The downside of the CT is the radiation, though apparently they don't use too much these days, otherwise it's not invasive like the heart cath and doesn't carry any risks (unless you're worried about radiation or allgergic to the dye which is extremely rare).

​I had a CT scan and an angiogram.

 

[epstns]

Anne - Yes, they can do the CT angiogram (my wife had this done), but I imagine that the choice is partly that of the surgeon and his preference. The tests give much the same sort of data about the coronary arteries, but unless things have changed a lot in the past few years, some insurance plans won't pay for the CT angio, while they will happily pay for the cath. Go figure.

When I was having the pre-op testing for my pacemaker lead revision they did a conventional cath. I asked if they could do the CT angio but was told that they would not, because if it did turn out that I had a blockage that would need a stent, they would need to do the conventional cath anyway.