Hi everyone new and a have a question

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dazzzlingdani

Member
Joined
Apr 3, 2009
Messages
18
Location
NY
well i have many questions/fears lol but this one has been haunting me particularly since I have reading up on bicuspid aorta. I hae been reading that aorta dissection is 9x more likely to happen to ppl with bicuspid aorta. Now does that mean the sole sympton is just because you are bicuspid aorta you can dissect or are there multiple things that need to be going on? I think at of all this I fear that the most because it seems if you dont' catch it quick the survival rate is practically nil.

I am having a hard time just going to work cuz now I am on some kick that I will have some massive heart attack or something there and will be in my office and won't get help..my mind is running off with this. I am in the process of getting my echo report form the dr this week, would love to post the numbers so maybe someone can give me better insight as I am new to it all. I can tell you that not much has changed since an echo I had 2 yrs ago and also since the one 4 yrs ago...I presume that is a good thing, that it is slowly progressing.
 
Welcome.....take a deep breath and relax. When you post your numbers, it will give people here something to compare to...in the mean time, are in the NYC area, or upstate?
 
If they are following your bicuspid aortic valve with echos, then they also have an idea of the size of your aorta. Has the cardiologist ever said that it is enlarged?
 
dazzzlingdani said:
I hae been reading that aorta dissection is 9x more likely to happen to ppl with bicuspid aorta. Now does that mean the sole sympton is just because you are bicuspid aorta you can dissect or are there multiple things that need to be going on?.
Click to expand...

Hello and welcome to VR.com! Since you have been following your condition with echos over the past several years, you probably don't need to freak out at this point. Relax a bit until you get the results of your latest echo. Post the numbers here and members will comment I'm sure.

To answer your question about symptoms and "multiple things going on," the literature on bicuspid aortic valves indicates that people with BAV have a CTD syndrome (connective tissue disease), which can manifest itself in problems with dilated aortas (aneurysms) as well as the potential for the development of aneurysms elsewhere in the body.

Take a look at the "stickys" in the Bicuspid Aortic Valve forum here on VR, and do some reading on the Bicuspid Valve Foundation web site for lots of more detailed information.

Best wishes,

Jim
 
tprice54 said:
Welcome.....take a deep breath and relax. When you post your numbers, it will give people here something to compare to...in the mean time, are in the NYC area, or upstate?
Click to expand...

Thank you! I live on Long Island but I am originally from NYC so I am very familiar with the area.
 
Mary said:
If they are following your bicuspid aortic valve with echos, then they also have an idea of the size of your aorta. Has the cardiologist ever said that it is enlarged?
Click to expand...

Nope it isn't thank goodness. I can't wait til I can get you guys my numbers...before the week is out I wil have them.
 
skeptic49 said:
Hello and welcome to VR.com! Since you have been following your condition with echos over the past several years, you probably don't need to freak out at this point. Relax a bit until you get the results of your latest echo. Post the numbers here and members will comment I'm sure.

To answer your question about symptoms and "multiple things going on," the literature on bicuspid aortic valves indicates that people with BAV have a CTD syndrome (connective tissue disease), which can manifest itself in problems with dilated aortas (aneurysms) as well as the potential for the development of aneurysms elsewhere in the body.

Take a look at the "stickys" in the Bicuspid Aortic Valve forum here on VR, and do some reading on the Bicuspid Valve Foundation web site for lots of more detailed information.

Best wishes,

Jim
Click to expand...

I will definitly start taking a further look, thank you. Well I just had an MRI and CT scan of my brain last month due to aura migraines adn all looked good so atleast I know I am not about to have a brain aneurysm..well at this point anyway lol. Thank you everyone for your quick answers.
 
I don't see any information listed about why you're seeing a cardiologist.
Do you have a bicuspid aortic valve? You've listed a bicuspid aorta, but I believe you mean a bicuspid aortic valve.:)
 
Yes sorry, bicuspid aorta valve, iy is slightly stenosis and leaky. I was told yrs ago that I also had mitral prolpase but this new cardiologist swears he doesnt see that at all.
 
dazzzlingdani said:
Yes sorry, bicuspid aorta valve, iy is slightly stenosis and leaky. I was told yrs ago that I also had mitral prolpase but this new cardiologist swears he doesnt see that at all.
Click to expand...

Do you suffer from high blood pressure? Are you on any medications? I don't think you need to worry about your aorta, particularly the risk of dissection, but once you receive the latest report you should have a better idea of what you're dealing with.
 
No I bought an at home digital arm blood pressure monitor and I have been reading at 113/74 or 113/69. Sometimes though and very rarely I can go up to 135/85 but the caridologist said that everyones blood pressure varies through the day. I had bought it to put my mind at ease because unfortunately heart disease and high blood pressure runs in my family. Also, I am not on any meds what so ever.
 
Welcome to our little group. You've got lots of company here who can help you as you navigate this new territory. I'm 6 weeks out from my own BAVR and I can attest that the time spent in the "waiting room" can be much harder than the actual event itself! My 6 months of waiting was much more difficult emotionally than anything the surgery could throw at me! The good news is that you've come to the right place and the folks here will help you every step of the road you are about to travel.

Jane
 
Hello and welcome. It will be very helpful to see your echo numbers because I have a feeling we will be able to really put your mind at ease once we see them.

Waiting for this surgery can really mess with your emotions. We have ALL been where you are. You will start wondering about all kinds of unfortunate outcomes, scenarios, pains, sensations.... you may even start to question the way people look at you and respond to you. It is truly enough to drive you nuts. That is why we all come HERE!!! This stuff is scary! But look at all of us. We are mostly happy and smiling, pain free, living our lives to the fullest. Sure, we might twist a certain way and get a little twinge of a reminder that they cut our chest in half. Or we might get discouraged about the look of our scars once in awhile. But for the most part, we are alive and well!!

So visit us often. Start a new thread when you have a new question. That way more people will see your question and respond to you.

And try to breathe and relax. There isn't much we haven't heard or felt, so feel free to ask anything here. It is the most wonderfully supportive community. You will soon feel right at home here.

Best wishes.

Marguerite
 
Thank you Marguarite. I am actually picking up my report this eveing, so after work I am gonna post my numbers and also my numbers from the echo 4 yrs cuz I would love a comparison.
 
The Best Way to view the Entire Aorta is with an MRI or CT Scan of the Chest. You may want to discuss this with your Cardiologist. Tell him you are concerned because you are aware that there is a high correlation between Connective Tissue Disorders (which can lead to Aneurisms) and Bicuspid Aortic (NOT Aorta) Valves.

'AL Capshaw'
 
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