Newly Diagnosed ASD

General ASD/Septal Defects Discussion
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1

Hi y'all!

I am new here...so just a little background:

In my teens I began having palpitations and even had my Mom take me to the ER on two separate occasions. Both times they did an EKG, which was normal, and told me I had a panic attack. I had a physical prior to starting nursing school at age 20 and my PCP heard a murmur. I went to a cardiologist who did an Echo and said I had Mitral Valve Prolapse, very mild, and that I would only need to follow up for echos every 5 years or so. I never really had any further symptoms aside from mild palps which I attributed to MVP, and I skipped my 5 year Cardiologist follow up.

When I was 28 I wanted to start a family and my Ob Gyn wanted me to get Cardiologist clearance. I went to a different Cardiologist who didn't even care to do an echo. He listened to me and said to forget I ever had MVP because he didn't even hear a murmur and send me on my way.

I am 29 years old and just had my son 4 months ago. About 2 months after I had him I had a couple major episodes of racing heart, weakness, dizziness...it was way beyond the minor flutters I was used to experiencing. They would last about 5 minutes and wouldn't subside until I laid down and took deep breaths. This made me a littler nervous so I returned to my Cardiologist, this time insisting on an echo. They did a bubble study as well, and I was absolutely shocked when my Dr came in and said I possibly had a hole in my heart (he said ASD or PFO) and he wanted me to do a Cardiac MRI. There was some "shunting" and moderate right heart enlargement. He said it wasn't urgent, and since I was breastfeeding I could wait several months until I was done with that.

I left his office in a daze, and immediately decided I was going to stop BFing and get the test ASAP. Through hours of googling I became more and more nervous about this possible diagnosis. I went for the MRI last week and my Dr called me Friday while I was at work. He told me I did have an ASD, 2cm/20mm, the secundum type. I immediately asked about device closure since I was hoping and praying for secundum so I would have this option. He advised against it, saying if I were his daughter he wouldn't let me have it...that OHS is the best and safest way given the size of my defect and the lack of research on long term issues with devices. I was crushed.

I have an appointment with a really good surgeon on May 9th...but I continue to do research on options..device (Helex or Amplatzer) and sternotomy versus Da Vinci. The problem is that I think because this condition is rare, and usually treated in kids..that it will be an uphill battle finding someone who is comfortable with all of the alternatives.

AT this moment I am leaning toward OHS with a sternotomy...although I know it will be a long and painful recovery I worry that the device will cause anxiety. I will worry about complications, issues down the road, etc and not be able to fully move on with my life. I am still blindsided by all of this as I have a 4 month old baby, and was at the height of my life when all of this happened.

My husband is scared (just like I am) about the OHS and pushes me to really consider the device if that is an option once I talk to the surgeon.

I just don't know what to do! I hate the idea of the pain, recovery, not being able to carry my child for awhile, with the OHS...but the issues with the device worry me.

2

I had a 10mm ASD, half your size closed with the HELEX. They went through my groin to close. “IF” you can have the HELEX my opinion after having it and researching the two I am very happy with my choice. I don’t have the chicken bone feeling in my chest. I feel nothing but better. I would get second opinions to help your decision. It’s a HUGE life changing event. The more info. you have the less anxiety you will have and more confidence in your decision.

3

just want to say. I had an ASD about the size of a silver dollar. OHS was done and the patch was taken from my shoulder (an artery I think) Recovery wasn't too bad (about 6 weeks) and now I feel good and just have to use an aspirin a day to fend off any clotting. But do take the recovery seriously and steady. I know it can be scary, we are also here with you :)

4

I'd also recommend getting a second opinion. At 32 I was told that I'd need to have OHS as my ASD ( (1.4 cm. secundum) couldn't be fixed via a device. I sought further opinions and found Dr Saibal Kar (Cedars Sinai). He was able to close my ASD with a Helex. Its been nearly 3 years now and I have no issues at all. My recovery was minimal and nearly painless. It is important you find a doctor with experience with the devices, as with anything, their expertise with the procedure dictates their confidence and ability to recommend it with confidence. Dr. Kar has worked quite a bit as an educator for many types of non-evasive heart repairs and has led treatment in many 3rd world countries where most people are not diagnosed until they are adults, so he was able to recommend the procedure having seen multiple similar situations.

I'm sure its really scary, but there is a lot of advanced work occurring in this field and there are several well researched alternatives that exist.

Hope that helps

5

I would also say get a second opinion. I'm 2 years out after having the Gore/Helex device put in. Up through the groin. My ASD was 1.8 cm in size and I asked the cardiologist if he'd closed any larger with this device. If I remember correctly he said the max was about 2.2 cm. I'm 36 and couldn't be happier with my procedure and recovery.

6

Thanks guys! I appreciate the responses. I am meeting with an Interventional Cardiologist next week for a second opinion on the device and then a surgeon a couple days later. I am going to decide after those appointments..if the device is even an option after I see the Interventional Cardiologist.

7

That's encouraging! Do you ever have issues with pain..especially w the sternal wires? I have read lots of people complain of discomfort with those and uncomfortable when sleeping or doing certain things even long after recovery is over.

Chromedome said:

just want to say. I had an ASD about the size of a silver dollar. OHS was done and the patch was taken from my shoulder (an artery I think) Recovery wasn't too bad (about 6 weeks) and now I feel good and just have to use an aspirin a day to fend off any clotting. But do take the recovery seriously and steady. I know it can be scary, we are also here with you :)

8

I actually haven't had any issue with pain. I'm not assuming anything about those who have. But my approach was a totally "I will not lift, or do any laborious work during my 6-week recovery." Lots of walking, (I did laps around the parking lot of my apartment complex) and taking it easy to let that bone structure to heal. Make it clear to your husband that he is going through this with you and that he will have a big role during that recovery. (God bless my sister who helped me out ) but that role is big so get him fully recruited on the plans.

HollyRN85 said:

That's encouraging! Do you ever have issues with pain..especially w the sternal wires? I have read lots of people complain of discomfort with those and uncomfortable when sleeping or doing certain things even long after recovery is over.

Chromedome said:

just want to say. I had an ASD about the size of a silver dollar. OHS was done and the patch was taken from my shoulder (an artery I think) Recovery wasn't too bad (about 6 weeks) and now I feel good and just have to use an aspirin a day to fend off any clotting. But do take the recovery seriously and steady. I know it can be scary, we are also here with you :)

9

Hello why did't you have a tee/toe?

10

hi Barbie,

well the hole was right next to/behind the valve, which was also partially torn. They ran a bunch of tests, but decided it had to be done OHS.

11

And what type.of asd.was this? I am.very scared of tee.so i.hope i can pay.for.mri.to confirm a hole or.not.

12

well it was congenital. Not sure what the official type was, but I had an enlarged right chamber due the hole (diagnosed as right-sided heart failure, although it hadn't produced an attack) So that may have been a contributor to the need for OHS. But to clarify, my OHS was a full chest opening ( I am glad I didn't look at pictures of this on the internet before the surgery)

Hope the info helps, and thoughts are with you for a good diagnosis. Keep us posted here.

13

Hi everyone..

I'm 49 years old and was told I have a 11mm ASD, I've had my MRI and am currently waiting on my results.. I have numerous symptoms such as heart palps, sometimes as many as 100 or more per day, I feel tired when it comes to work and exercise, sometimes I feel dizzy and completely miserable on times.. Up until two years ago I didn't think there was anything wrong with me.. It's a scary think especially being in limbo awaiting results from my doctor, all I know is that I can't continue to feel like this.. Very surprised that symptoms such as the ones I have came about so suddenly.. Pretty much went to bed one day feeling perfect and woke the next day a very sick man.. Any encouragement and uplifting comments will be appreciated..

14

Hi Sergeant. I had a 32mm asd closed with an Amplatzar back in Nov. 2014. I feel great now. I, too, had palpitations and was out of breath alot. I put off the surgery for a couple years because I was terrified of it but am so glad I finally got it done. I think anxiety made symptoms worse since I was constantly researching and soaking up info…not good sometimes lol. My heart always felt like it was going to jump out of my chest. I tired easily as well. But not anymore. God is good and you are in His hands. Don’t rely on any one opinion. Get a 2nd, 3rd, 4th etc. I was really scared but found a great interventional cardiologist and here I am. Lol. After you have your asd repaired you will feel 100% better. I am keeping you in my prayers.



Sergeant said:

Hi everyone…

I’m 49 years old and was told I have a 11mm ASD, I’ve had my MRI and am currently waiting on my results… I have numerous symptoms such as heart palps, sometimes as many as 100 or more per day, I feel tired when it comes to work and exercise, sometimes I feel dizzy and completely miserable on times… Up until two years ago I didn’t think there was anything wrong with me… It’s a scary think especially being in limbo awaiting results from my doctor, all I know is that I can’t continue to feel like this… Very surprised that symptoms such as the ones I have came about so suddenly… Pretty much went to bed one day feeling perfect and woke the next day a very sick man… Any encouragement and uplifting comments will be appreciated…