New here with a new diagnosis

Hey all, I was just diagnosed with Sinus Venosus Atrial Septal Defect last week. I did a TEE last week and am waiting to hear from my cardiologist and the surgeon he is recommending. I was wondering what questions I need to ask and if anyone has any surgeon recommendations in the Chicago area. I am 35 with three young children. I am feeling very overwhelmed with this diagnosis but very glad I found this site.



Great job posting right away with your questions!

Hi Steph!
welcome to this support group!my sister was diagnosed with a fenestrated asd for 3 months ago and her surgery has been planned on Friday so we are keeping our fingers crossed.i can give you the questions i asked our surgent:

surgery questions asd

1.what examinations must be done before operation?laboratory,TEE,MR,EKO?
2. Pericardial or Dacron patch closure?
3.Postoperative TEE or normal is it performed?
4.B blocker drugs?yes or no?initiation?duration?
5.Type of incision(under breast or middle?).Risk of conversion to a more invasive approach or inadequate repair?
6.Antibiotic profylaxis?
7.Can u have numbness in the area?
8.drugs?how long?dosage?
9.When does the pain subside?When do u feel normal again?type of pain killers?
10.How many days does one stay in hospital?in ICU?
11.Are any drains left?how long?
12.Follow up?

i know its very scary right now but it is important that it was discovered and it is a problem that can be solved!i wish you all the best!

Hi Steph:

I am a mother of 4 and 43 years old. I know how scary it is to get an ASD diagnosis. I had open heart surgery almost 6 months ago to repair the ASD as well as repair my tricuspid valve. I would recommend the following:

Research your condition, read up on research and options for repair. Though it is scary, the more exposure to terminology the better.

If you feel the slightest bit confused or do not feel comfortable with the cardiac surgeon, get a second opinion. If they say the exact same thing, all the better. If not, you can sort out each opinion and even get a third opinion.

Ask about procedures, recovery time, preparation and plans to battle post operative anxiety/depression. All the research indicates that this is a real thing and I can speak first hand that the post operative depression has been a real problem for me.

Be prepared to accept all and any help offered no matter what it is. Let people help you and ask for help. talk about your feelings, it helps everyone including yourself.

As you learn more and have more questions, ask them on this website and anywhere else you need to.

You will never be totally prepared for whatever comes your way, but with faith in your medical providers and all those around you, you will be just fine!

Best of luck and warm wishes.


What a great note Jean. That is so wonderful of you to take the time!

Hi Sours, I also had your same condition and had surgery 5 months ago to correct it. If you have any question please feel free to ask. Sinus Venous Atrial Septial Defect is one of the rarest ASDs and it's very hard to find many people who share the same condition. I researched and found the best hospital and doctor to perform the operation and I am very happy with my choice. Edian