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New diagnosis...now what?


#1

Hello,
My large atrial septum aneurysm and PFO was just discovered this summer after going to the ER for chest pains. Turns out the chest pains were unrelated, but now I have a whole new set of concerns! 1) Increased risk of stroke and 2) finding a good cardiologist…the first one I went to did a recent Bubble Study Echo (+) but did not follow up with the TEE test like she initially told me about. How can they know what the size of the hole is with such limited testing? Don’t we need to know this, for many reasons? I also have HTN (controlled) from preeclampsia, ongoing now 2 years, so that is also an increased risk of stroke. I have had a clunky, irregular tachycardia in the past that the motroprolol helps with. I had to bring the stroke risk up to her after doing my own research, and only when I asked her if I should taking aspirin daily, she just said ‘yes, I could’…but is that what she recommends? How much am I at risk for stroke? Do I take it every day for the rest of my life? So I will be going to Univ of Washington cardiology after I get a referral to go to the best! Any thoughts or opinions are appreciated!


#2

Hi Greer, Welcome to the forum and hope you find a lot of support here. I am an ASD patient myself and will explain the role of blood thinners in my treatment so you can get an idea as your doctors “yes you could” clearly does not seem to be an adequate response to you at this stage.

After my ASD surgery I was given blood thinners (ecosporin) starting with a high mg which was gradually reduced by the cardiologist over the course of my follow up visits. I had to take ecosporin for 6 months post surgery and was only advised to stop it for a few days as I planned to undergo a dental procedure which did not happen.

My ASD was first discovered through a 2D ECHO, subsequent to which a TEE test was also conducted. Both tests give an indication of the presence of ASD but size is perhaps better understood from the TEE test.

To share a new learning from this forum, a new member just posted that s/he was diagnosed with ASD basis the 2DECHO but during the surgery it was discovered as a false positive. Moderators here will validate that this can happen. Hence, a request to do a TEE might be advisable before you resign yourself to have ASD.

Hope this helps.

All the best- Ashish


#3

Hi, I am new to this forum. I am wondering if anyone can tell me if all ASD’s have to be repaired? I was diagnosed with one a couple of weeks ago after going to the hospital with chest pains (which they say are not related), however after they did a scan, they informed me I had an ASD. I am due for TTE in just over a week. My GP seems to think that as he can barely hear a murmur, its likely very small, so didnt seem concerned at all. Should I be? Cheers Sunshine