I had my ASD closed in 2011 with an Amplatzer Septal Occluder device. For a little while following the procedure I felt much improved. (I was symptomatic upon diagnosis and my dr scheduled my surgery 2 days after the hole was discovered because I was a 5++ result from the transcranial doppler test) I then had my second child in 2012 and although the pregnancy went well, I felt like I started to "go down hill" so to speak. Tired all the time, shortness of breath, heart palpitations, insomnia, exercise intolerance. Over the last 6 months, these symptoms have all gotten worse and I also started having chest pains on the right side of my chest. Occasionally the left as well, but generally the right.
I had all of my follow up appointments the year following the procedure, and then my cardiologist unexpectedly retired and referred his patients to a group of doctors whom I wasn't particularly comfortable seeing. During my pregnancy in 2012, I went to my GP and requested an echo and bubble study which came back normal and it appeared the hole was still adequately closed. My question: aside from seeing a new cardiologist (which I am planning on doing asap), how worried should I be about the new FDA report about erosion related to the device? I am a generally healthy person and I feel like I can't shake these symptoms. The most disconcerting is my severe inability to exercise. I have always been an active person and now I can barely make it through a 30 min cardio class. Any feedback would be appreciated!
Hi Blaire -- I read your posting with great interest. I too have a similar situation. I am 41 and had a closure last Sept.
I felt better after the surgery and my oxegenation is still better. I don't feel that I am out of breath all of the time.
But I do feel weak, I have palpitations, and my ability to exercise has decreased. Last year I was running 5 and 10k races
and now I can barely do 30 minutes on the Elliptical. I have had follow ups with my Cardiologist and my Surgeon.
I just had a echocardiogram last week - they think everything looks good and my issues are stress related.
But I know they are not right (I have had anxiety attacks in the past and they are not like this). My chest constantly feels like I have a chest cold and that I was up all night coughing. It is that sore/raspy feeling in my chest. I feel like this all day everyday - how can that be right?
Someone else suggested the erosion possiblity. I don't know my echo shows the device is seated well and that oxygenation is not a problem. But would a regular echo show - the signs of erosion? I have a big device - my doctors say I have one of the larger holes they have fixed (2 cm).
Well Blaire if you find anything let me know - I may try to see another specialist - I just know that something is wrong - I just want to feel "normal" again.
best of luck, Jennifer
I just read the report. It’s been ten months since my ASD, repair with the Amplatzer Occluder Cribiform. I have not experienced any negative symptoms. The report does cause me to be concerned. We have to be positive and have faith. Have you scheduled a second opinion?
Hello all. Just an update: I was finally able to get in with a new cardiologist. He is amazing!! They did a new echo and everything looked normal. My device is still in place and doesn't appear to have erroded. But they didn't do a bubble study with the echo... anyone have any thoughts on how this would affect what they were able to see, aside from confirming complete closure of the defect? He did, however, diagnosed me with POTS. In my research, it is pretty clear that although not a disease in and of itself, the myriad of symptoms comprising the syndrome point to a larger health problem. So, now I suppose I am on the journey to discover my underlying health issue. But it is reassuring to know that my heart seems to be ok! I hope you are all able to find such confirmation that your devices are still in place and doing well!
I went to see a new Primary Physician this week and he has now suggested POTS. He wants me to do a tilt-table test.
Have you had one? I am still have chest pain and fatigue. I really hope we can find a diagnosis and treatment.
How does your doctor want to treat your POTS? I would be very interested to hear.
I have had follow up echos this year but I have not had a bubble study in the last 4 months. I also worry that POTS falls under "chronic Fatigure Syndrome". I just want to feel that way I did a year ago before everything started.
Well thanks for your update - keep us posted. Sounds like we have alot in common with our hearts!