I am 27 and was diagnosed with a large ASD. The doctor said it is my choice whether I choose to close it with surgery or a device. I don't know what to do. Obviously I would like to avoid the pain and recovery time of open heart surgery, but I am worried that the implant devices are relatively new. I am young, and don't feel like the 20+ year consequences of the implants are well known. When I am 60, will they realize that nickel was being released into my body and causing cancer? Will the device hold up? Maybe I should just suck it up now and have the surgery. But at the same time I feel stupid opting for open heart surgery over a 1-day non-invasive procedure. Any stories, advice, experiences would be appreciated.
terrific questions. Maybe some of the members can weigh in.
Hi. I would recommend the closing it with the device. There are risks with everything you do. My two year old just had his ASD closed with the device and has been doing great. He showed no signs of pain at all. He's been full of energy since we came home. I was extremely worried that the device would come out of place but we had a great surgeon that showed us the video of him pushing and pulling on the device before he completely released it and he explained that he put more pressure on the device than any normal activity would just to make sure it was securely placed. I hope I've helped. Good luck!
Akbh no one can make this decision for you- please take your time and be really secure in whatever decision you make before you commit to anything. I too had this same choice to make- I chose open heart surgery. Reading the official amplatzer patient guide helped me decide what to do. I had what they thought was a nickel size hole- 2 cm they said. It was low near the valves. The more I read the more I found that the lower the hole and the bigger the hole is where all the risks go up. I talked to a surgeon and a cardiologist that does the device closures. He said that the problem with the device is that you could be eating thanksgiving dinner (his words not mine) and It suddenly erode through my heart wall. He also said that they don’t have long term studies to see how it does. I am 31 with two small children- that’s not good enough for me. He also told me that the device could “embolize” (hope I’m saying that correctly) and unattached from the heart wall and move thru my veins causing instant stroke and death. I was scared to death choosing surgery. I can’t tell you how many nights I lost sleep and cried all night long. It’s unfair. I am now 9 weeks out from surgery (4-1-2013) and I am secure with the decision I made. I love the doctor I chose and I am feeling better. If you chose open heart- read everything you can about what to expect- that helped me so much. I am also willing to help you however I can. I was lucky enough to have someone help me and I won’t forget how that felt! God bless you and take time to decide for yourself. It took me awhile to work up to my decision and I had a lot of people tell me a lot of things. Best of luck to you! - Wendy
AKBH: My 17 month son just had OHS on 5/15. We originally attempted to do the cath lab procedure(amplatzer device). However, during the cath lab attempt, the team of doctors determined…via camera that there was not enough tissue surrounding the hole. This was not seen nor detected during the monthly echocardiograms. So we were left with not choice but to have OHS. We later found out during OHS, the surgeon had to use a patch (tissue taken from my son’s outer skin of his heart) to close up the hole as well as mend the bottom half of the hole.
I had the device placed a year ago. It has remained in place with no problem (x-ray's have confirmed this twice). I did have various issues with my heart for the first 9 months. During the past 3 months things have settled down. I'm still on various meds but hope to start weaning off them in August. Sometimes the heart doesnt like the implant - everyone will react differently. I started to have atrial fib and breathing issues. I felt pretty bad for the first 4-5 months. Once I got on flecinade my issues went away but it has been a struggle. I am 60.
I am 43 and just had OHS on 4/29/13 to close an ASD which was a bit smaller than a quarter. I wasn’t given the choice of device closure or OHS as I also had my tricuspid valve repaired. I am super happy I had OHS even though it is a nasty recovery. The reason is that the surgeon could see everything and the hole was much bigger than any of the imaging ( TEE and cardiac MRI and echo)showed. The surgeon sewed the edges together so I don’t have an additional foreign body in the heart. This is a personal choice but when I began this journey they thought I only had a small hole and discussed the device closure and I was so afraid as there are so many things that can go wrong I knew I didn’t want to do it! Best thoughts to you as you make your decision. I am happy to answer any questions you might have about OHS. The more you know the better!
I had a heart cath with the amplatzer device put in me when I was 20(have never had issues with it)as well as OHS for another ASD when I was 22. I agree with Jlgf42 that having the OHS they are able to see everything. When I had the heart cath to put the device in,they did not notice I also had a sinus venosus ASD which was found at my 1 yr. check-up with an echo and a TEE to confirm (Needless to say I had a 1,3 &6 month check-up before it was found). I was only given the choice of having OHS for this particular kind of ASD or no surgery at all. Having OHS was a frightening and horrible experience, the recovery was painful but I’m glad I did it. I feel at ease knowing they saw everything during OHS and won’t tell me at my next check-up that I need another surgery. Best of luck on your decision. I hope everything turns out well for you.
I just had a cath closure a week and a half ago with a helix device at Johns Hopkins. My hole was 17mm.
The cath closure was very easy. One night in the hospital and very little discomfort. Within a day, i noticed a difference. I had palpitations for a day and haven’t felt them since. My dizziness, brain fog and visual floaters have all gone away!!im not out of breath all the time! I still feel tired which is frustrating but my doc thinks it will improve as he said I’m still adjusting and have been very stressed so its normal.
I’m grateful to have had the closure as my father just passed away almost a year ago from OHS at 65 years old to fix a mitral valve. I saw his struggle and pain and there is no way I would put myself through that given the choice to have a heart cath procedure. I am grateful for the advancement in medicine and happy with my results. I can’t say I’m not worried or concerned about having an implant in my heart, but with yearly check ups I can feel secure knowing its ok.
I wish you the best of luck making your decision. The one thing I would suggest is to get a second or even third opinion. I went to 2 interventionalists who both specialize in ASD. Both agreed cath closure was the best option for me. A great website for adult congenital heart defects is achaheart.org they have a physician list of docs around the us that specialize in adult congenital heart defects. Take a look and find one in your area. Getting a second opinion may help you decide what is best for you.
I liked all of the responses, especially Palmetto girl. I agree that it is a decision that you have to make and feel comfortable with.
I am 33, had my ASD closed via Amplazer device almost a year and a half ago. Had palpitations the first month post op but they resolved. I have felt great, back to normal and to my workouts.
I researched both, OHS and device closure, and consulted with like 3-4 cardiologists. All of them said the same thing, it is my choice, but device closure has been well tested now, to the point that it has been approved for the pediatric population. On one hand, I don't like having a foreign object in me, on the other, I was concerned about the risks of OHS. I also thought that if they went in percutaneously and found they couldn't use the device to close it, the OHS would always be an option. Regardles of what you do, there are risks with both. It's a matter of what you feel more comfortable with and trusting your doctor.
I am sure you will make the best decision for you. If you have any specific questions, don't hesitate to contact me.
Best of luck :D
Thank you all so much for the replies. I am sorry I could not update the group earlier - they found out after further testing that my hole was too large and there was no rim so I could not so device.
Everything happened so quickly after that I have not had time to post. Regardless, I think this discussion will be very useful to others that will face this dilemma.
I had my OHS on Tuesday. The pain was worse than I could have ever imagined but now I am home slowly recovering. I set up a caringbridge website that documents some of the process - might be helpful to ppl preparing for OHS (although each experience is unique and this was my first ever surgery so I was shocked by the pain). http://www.caringbridge.org/visit/annakatherinebarnetthart
Thanks again to the group for all the info!
thanks for answering to having my ASD closure. When can I start to exercise going on 2/25