Has anyone here with a "small" ASD has not been recommended closure?

General ASD/Septal Defects Discussion
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Hello, my name is Nichole and I'm 37. I found that I had an ASD at a very young age, but they were sure it would close on its own. Annual testing done and by the time I was 12, they didn't find any evidence of ASD or murmur. Apologies, this will probably be long.

Fast forward to my early 30s, I began having some shortness of breath, skipped beats and palps. I was referred to a cardiologist and I told him my history and he suggested an echo to possibly look for an ASD. He thought he may have seen one, so he then scheduled a TEE. Indeed he found a 0.5 cm ASD with a mildly dilated left atrium and a bit of shunting.

Due to extreme anxiety about the situation (and major anxiety in general) ,it took me 2 years to follow up for a 2nd opinion at an other cardio. He gave me an echo, holter monitor and numerous EKGs. According to the notes on the echo, he did not see an ASD, but he did see an atrial septal aneurysm after a bubble study. No right heart enlargement or any sort of enlargement noted. Some shunting noted.

Sorry, I hate to say I didn't like the previous doc too much, so I visited a cardio that specialized in ASD closures for a 3rd opinion (Great thing about living in a large city!). He didn't test me, but looked over my previous testing and history and assured me that he did not think that the defect was large enough to be affecting me at all and that it could possibly be my anxiety. What prompted me to visit, is that I have my first SVT attack. Very scary and heart beat was approaching 200 bpm and sometimes over which I went to the ER for and was converted. Was wondering if it was related to my little ASD.

He then explained to me that ASD was more of a heart "plumbing" issue while an SVT is more of an "electrical" issue. Which prompted me to again see another cardio - an electrophysiologist. He gave me some calcium channel blockers to use only if I went into SVT again. Well 1/2/15 I did again, and it took me an hour to convert and I STILL feel horrible from it. A fullness in the left side of my chest and trouble breathing. I visited the EP again and he took an EKG and put me on beta blockers to take every day, since I do suffer from tachy from anxiety anyway.

The thing is, I felt totally in control before this last attack (The first and 2nd were 6 months apart). I was wondering if anyone had ill effects from not having a small ASD not repaired? Also has anyone experienced SVT with ASD?

Thanks for any insight, this is taking such a toll on me mentally and emotionally. Also, I google things too much :D

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Thank you for your insightful reply!

When it was definitely confirmed as a child, I remember having to go through a cardiac cath at a children’s hospital. I do no have the records from it, I’m guessing I was around 5 or 6? It was then that they made the decision to watch it instead of operate. This is when it was checked annually (by echo) until at 12 I was given the a-ok. I assume that when they did it then that hopefully the they didn’t miss anything but I understand they can get larger over time. I lived a pretty normal childhood and was an avid mountain biker, hiker and pushed myself weight lifting.

At the age of 32 I lost my mother after a lengthy Illness, got divorced and made a huge move halfway across the country which made sense of why my anxiety snowballed at the time. That is when I decided to explore medical issues because of how just “off” I felt.

When I did get the TEE, while the technicians did set it up and were present, it was the cardiologist that actually did the procedure. I unfortunately wasn’t knocked out like they said I would be. He suggested a cath to just get my pressures. That is when I sought out someone that might be able to close and get readings at once.

I did purchase a oximeter when I first found out that I still had the ASD. Always 98-99, it did give me peace of mind, but made me feel awkward telling doctors I monitor this. Also helped me record my 200+ bpm SVTs.

I would like to note above that you mentioned it was 0.5mm, when it is 5mm. Also, when the cardiologist completed the TEE, he told my husband and I that it was 2mm, that it wasn’t that easily visible until I coughed, but then at my 2nd opinion, it was noted in the written results that it was 5mm.

Also at the EP appointment two weeks ago, he assured me this was an anxiety issue and not a heart problem. How did you get the two to be diagnosed as being related? How has living with a 9mm affected you mentally and physically?

Thanks again,
Nicki

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Thanks again for your replies, glad to hear that it has been stable and you've been able to remain active! Many thoughts and well wishes your way :)

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Nicole,

I honestly believe that if you are feeling this way, you should look for a doctor who will listen to you. If your heart wall have aneurysm and there is shunting, then you have a hole that may need to be fixed. Part of the reason we get more symptoms with ASD as we get older is because the heart wall develops an aneurysm from the uneven pressure. I was 28 when I first developed symptoms that I noticed. I was told for 3 months that I had anxiety and was presribed Xanex. It did nothing for my symptoms. I became very agitated, and I insisted I see a neurologist, because I finally suffered with 2 TIAs. Thank goodness he was smart and a good listener. He sent me straight for echo and they found the aneurysm and the shunting, and I also had a Chiari membrane. The TEE revealed a PFO, but it did not reveal that I had several holes in my atrial septum. They only found those once they were doing the heart cath to place the amplatzer. When I woke from surgery they informed me that my heart wall looked like swiss cheese. I believe we as individuals know our bodies best, and unfortunately we have to be forcful in getting doctors to listen sometimes. Sorry you have experienced this.

Shea