1. < Aortic Aneurysms

Head/Neck and Chest/Abdomen/Pelvis CTA

Posted by lsquared1004 @lsquared1004, 3 days ago

I just had my annual check-up. They just did an echo this visit. My two aneurysms (ascending and root) appear to be stable. Because genetic testing did reveal a variant of unknown significance (VUS) AND I have other medical issues that point to some type of connective tissue disorder, he's ordered Head/Neck and Chest/Abdomen/Pelvis CTAs. He said we probably should have done it sooner. But he wants me to do them a couple of weeks before I see him again next year.
Anyone else had these done after aneurysm diagnosed in the heart?

Even though my BP is not high, he does want me on an ARB because there is evidence they are prophylactic in preventing aneurysm growth. Unfortunately I've been on NSAIDs for my other issues and haven't been able to take them consistently. Although I must admit I hated every ARB they tried on me before. He really wants me on Losartan because my VUS is in FBN2, where the Marfan mutation is also found and Losartan has shown good results in slowing growth in that population.
Laura

Interested in more discussions like this? Go to the Aortic Aneurysms Support Group.

houston13 | @houston13 | 3 days ago

I had an ascending aortic aneurysm repaired 5 year’s ago (found after a bike accident), I also had a brain aneurysm (also repaired) that was found because my brother had one also and his ruptured., so I got checked. We knew of several family members that died of aneurysms so my PCP agreed that I needed to be checked.

Because of that history my cardiologist who is an aortic disease specialist and also does genetic research, thinks my family has a genetic propensity, although I don’t have any of the known markers. He enrolled my family in his research to see if a new one would be identified.

I see him every year and he orders an echocardiogram mainly to check my aortic valve (I have a BAV) and the repair. In addition , although all my known aneurysms are repaired, he orders groin, abdomen, chest and head MRIs every 4 years (about 3 hours) to ensure no other are appearing,

In my mind that’s an indicator of a Dr that knows well his specialty and cares for his patients

REPLY
1 reply
eawarl | @eawarl | 2 days ago

I have a 4.0 AAA and a dilation on my celiac artery. I mentioned to my doctor that I was having lots of anxiety about where else aneurysm might be, so he ordered a brain MRA and an abdominal CT scan. Both came back showing no issues which has eased my anxiety.

REPLY
justwannasay | @justwannasay | 2 days ago
In reply to @houston13 "I had an ascending aortic aneurysm repaired 5 year’s ago (found after a bike accident), I..." + (show)
@houston13

I had an ascending aortic aneurysm repaired 5 year’s ago (found after a bike accident), I also had a brain aneurysm (also repaired) that was found because my brother had one also and his ruptured., so I got checked. We knew of several family members that died of aneurysms so my PCP agreed that I needed to be checked.

Because of that history my cardiologist who is an aortic disease specialist and also does genetic research, thinks my family has a genetic propensity, although I don’t have any of the known markers. He enrolled my family in his research to see if a new one would be identified.

I see him every year and he orders an echocardiogram mainly to check my aortic valve (I have a BAV) and the repair. In addition , although all my known aneurysms are repaired, he orders groin, abdomen, chest and head MRIs every 4 years (about 3 hours) to ensure no other are appearing,

In my mind that’s an indicator of a Dr that knows well his specialty and cares for his patients

Jump to this post

Hi Houston13, sounds like you have excellent care. You mention having a BAV ( Bicuspid Aortic Valve) as do I. Not many people do. I am slated for replacement but I hope they can repair it. I/we have very inadequate health care in BC......shortage of every type of professional....anyway, just wanted to say hi, as you are the only other person I know of with a BAV.

REPLY
1 reply
houston13 | @houston13 | 2 days ago
In reply to @justwannasay "Hi Houston13, sounds like you have excellent care. You mention having a BAV ( Bicuspid Aortic..." + (show)
@justwannasay

Hi Houston13, sounds like you have excellent care. You mention having a BAV ( Bicuspid Aortic Valve) as do I. Not many people do. I am slated for replacement but I hope they can repair it. I/we have very inadequate health care in BC......shortage of every type of professional....anyway, just wanted to say hi, as you are the only other person I know of with a BAV.

Jump to this post

Hi, I believe the statistic is 1 in 100 people have a BAV and the BAV makes you more susceptible to developing an aneurysm, so in my case with genetic propensity and a BAV having an aortic aneurysm was high probability. My BAV was left in place when my aneurysm was repaired as it was highly functional and the surgeon told me my natural BAV would be better than any artificial device. My surgeon had a swine valve ready during my OH surgery. It will have to be replaced at some point but now that my aneurysm is repaired it can be done through catheter

I do feel fortunate, both my surgeon and cardiologist are top notch, it makes such a difference

Are there better alternatives in other regions of Canada?

All the best!!

REPLY
1 reply
justwannasay | @justwannasay | 2 days ago
In reply to @houston13 "Hi, I believe the statistic is 1 in 100 people have a BAV and the BAV..." + (show)
@houston13

Hi, I believe the statistic is 1 in 100 people have a BAV and the BAV makes you more susceptible to developing an aneurysm, so in my case with genetic propensity and a BAV having an aortic aneurysm was high probability. My BAV was left in place when my aneurysm was repaired as it was highly functional and the surgeon told me my natural BAV would be better than any artificial device. My surgeon had a swine valve ready during my OH surgery. It will have to be replaced at some point but now that my aneurysm is repaired it can be done through catheter

I do feel fortunate, both my surgeon and cardiologist are top notch, it makes such a difference

Are there better alternatives in other regions of Canada?

All the best!!

Jump to this post

Hi again, thanks for writing. No, the whole country is in the same boat. Once you get the care you need, it is top notch. but, for instance, my city has one hospital and it does not have a cath lab, so all cardio procedures ( for the whole of Vancouver Island ) are normally handled in Victoria which is a two hour drive from me. I've had annual echos for seven years. They have to wait for the stenosis to reach severe before they do anything about it... I'm almost 74yrs. old....anyway....If I ended up in emerge because of a sudden issue, I'd be airlifted to Victoria or Vancouver immediately and cared for. If your name suggests where you live, I hope you are surviving the heat wave!

REPLY
2 replies
houston13 | @houston13 | 2 days ago
In reply to @justwannasay "Hi again, thanks for writing. No, the whole country is in the same boat. Once you..." + (show)
@justwannasay

Hi again, thanks for writing. No, the whole country is in the same boat. Once you get the care you need, it is top notch. but, for instance, my city has one hospital and it does not have a cath lab, so all cardio procedures ( for the whole of Vancouver Island ) are normally handled in Victoria which is a two hour drive from me. I've had annual echos for seven years. They have to wait for the stenosis to reach severe before they do anything about it... I'm almost 74yrs. old....anyway....If I ended up in emerge because of a sudden issue, I'd be airlifted to Victoria or Vancouver immediately and cared for. If your name suggests where you live, I hope you are surviving the heat wave!

Jump to this post

Thanks for asking, I do live in Houston, but here we are used to the heat and humidity, business as usual for us, the north east not so much they are struggling

REPLY
houston13 | @houston13 | 2 days ago
In reply to @justwannasay "Hi again, thanks for writing. No, the whole country is in the same boat. Once you..." + (show)
@justwannasay

Hi again, thanks for writing. No, the whole country is in the same boat. Once you get the care you need, it is top notch. but, for instance, my city has one hospital and it does not have a cath lab, so all cardio procedures ( for the whole of Vancouver Island ) are normally handled in Victoria which is a two hour drive from me. I've had annual echos for seven years. They have to wait for the stenosis to reach severe before they do anything about it... I'm almost 74yrs. old....anyway....If I ended up in emerge because of a sudden issue, I'd be airlifted to Victoria or Vancouver immediately and cared for. If your name suggests where you live, I hope you are surviving the heat wave!

Jump to this post

BTW my brother is Canadian his brain aneurysm got treated in Calgary where he lives, I personally wasn’t 100% impressed with the care as his repair did not work well and he had a second rupture, I do think some things could have been done differently to prevent reocurrence, the second rupture was grave

I hope when is time you do get great care and everything goes excellent!!!

REPLY
justwannasay | @justwannasay | 2 days ago

The US has many world renowned research, teaching and training clinics and hospitals.....enviable. Thank you for your good wishes! Stay healthy.

REPLY
Please sign in or register to post a reply.