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Living With Congenital Heart Defects by Ben's Friends

ASD/Septal Defects - Aortic and Vessel Defects - Single Ventricle Defects - Tetrology of Fallot - Transposition of the Great Arteries - Valve Defects

Living With Congenital Heart Defects

ASD closure problems

Hello,
On 5/13/17 I had a beautiful baby boy, then I crashed and learned I had an asd that needed closure. On 10/19, the surgery was performed after being cancelled three times. After my heart stopped twice, I was put on a ventilator. Thankfully I am writing for advice today. Since my surgery, I have experienced episodes of dizziness, breathlessness, the feeling that someone is crushing my chest, the feeling someone is squeezing my heart, low heart rate, very high heart rates and the list goes on.
My most recent test came back normal (Although the last time this person did it it was the same and the following week it showed enlarged arteries). My surgeon is pretty much done with me stating that the device looks fine and perhaps I need to have it surgically removed and repaired. I have a 14 month old boy and because of the issue with the last surgery I am scared. But, I feel like I have no quality of life because I always feel sick. I don’t know what to do. I feel as though the doctor thinks I am crazy and because he wants a successful outcome, doesn’t really care to see me anymore (a switch from before and after the surgery). I have complained about the same issues since I went home after 7 days and it HAS NOT GOTTEN BETTER! Any advice, suggestions… or am I crazy?

You are not crazy.

I would say a second (and third) opinion are needed. And if your surgeon is done with you, you need to be done with him.

I had the same issue with a surgeon after I had my shoulder reconstructed (2 plates and 9 pins). I knew something was wrong, the pain was just wrong, too much swelling, and so on. Always remember you know your body best! I tried to tell the surgeon there was a problem, he looked right at me and said “Surgery hurts.”

If my left arm hadn’t been in a sling and almost three times it’s normal size from swelling I would have strangled him with my bare hands. As it turns out, the surgery damaged the lymph nodes in my arm! I now have chronic lymph edema, do daily home therapy, had have lost about 50% of the use of my arm. My original surgeon did not want to here it and never even put the official Dx in my file (which created all kinds of insurance issues for therapy later on) even after he was notified, in fact, the official notification letter from my physical therapist never made it into my file at his office.

The biggest thing you need to remember is that YOU know yourself, the surgeon does not.

Be your own best advocate!

azurelle

Did you have a catheter delivered device like the Amplatzer ASD closure debt? Or was it open heart ASD repair?

Perhaps you may have a nickel allergy?

Definitely get another opinion from another congenital heart cardiologist- they may want to do exercise stress test and holter besides cardiac echo and EKG.

I hope you find a cardiologist who is interested in congenital heart conditions and is listening to your concerns.

You know your body best and you are your best advocate… so if you do not feel right, then do get another opinion from someone who is empathetic to your symptoms.

I don’t understand? What device ?

Amplantzer Device

Usually if it is a open heart surgery,They close the ASD with patch not device ,Device is used only in Trans catheter procedure?

I did not have open heart. I had it done via trans catheter. They are considering removing it and repairing it.

Best,

Valicitie

Oh sorry,Thats really sad. So can they patch fix it while opening the heart and remove the catheter? I think that will be better to avoid future complications ,My doctor told me minimal invasive surgery with patch closure is always better than Catheter closure.

Hi there, I’m a little late to the discussion, but I actually had a baby boy 4 weeks before you! When I was pregnant I passed out at home constantly, was dizzy & lightheaded 100% of the time & spent most of my time with my legs elevated to prevent passing out. Everytime I complained about this to my OB they stated that it was “just part of being pregnant” although I now see that it was probably from my ASD and they did a poor job of caring for me. Did you have any symptoms during pregnancy??
After my surgery I had ALL of the same feelings and symtoms that you are describing. My ASD was found and closed 3/2018. I can’t tell you how many times I have been to the ER, and like you, my surgeon is done with me. I really liked my surgeon but I can tell he feels like he did the surgery, his work is done, and his place is not to be bothered with my post surgical complaints. Just as you said, after my surgery it often felt like a ton of weight was on my chest, I couldn’t walk more than 20 feet. I had very low heart rates, very high heart rates, chest pressure, chest pain, extreme shortness of breath, irregular heart rhythms, I went a month in bigeminy, (where every other heart beat is a skipped beat), it felt awful. The first few months I could not care for my baby, I couldn’t do anything, I thought I had no quality of life. I will say that while I still feel like crap, it has gotten better than when I first had the surgery. You are not alone! I don’t know if a removal is the best option. I imagine a removal is a lot worse that the inital surgery. What size was your ASD?

Dvorak, I read that you have an increase in migraines now. I also have them and they feel like a stroke, it can be so frustrating. Every time I saw cardiology they asked if I had migraines. There is something about ASD’s that greatly increases the incident of migraines. The last time I saw cariology they suggested that often those with ASD’s that drink wine, mostly red, will get migraines. Although that is rough data and they are not sure of the specifics that cause it, just that the 3 are linked (ASD, wine, migraines) (although it can be a different rigger other than wine) I have an ASD and drink white wine. After hearing that I stoppped drinking wine and my migraines have decreased about 75%. Do you drink wine?? Something to think about.

Hi MJM,

It is 2 years now since my ASD closure with Amplatzer device. My migraine auras were very common the first 6 months- about 6-8 per month. Then they decreased to about 1-2 per month. I kept a log of them and associated events so I could learn what triggers them.

I only drink 1-2 glasses of white wine per week and have not seen an association with my migraines. My auras are associated with being tired (not enough sleep or stress) and exercise. When I do get them, it feels like a mini stroke and I fell tired, off balance, with brain fog, and significant photophobia and nausea for a whole day after.

I am not sure if Amplatzer treated ASD patients get more migraine auras or if they are the same as surgically treated patients with open heart surgery?