Elizabeth (@Elizclwtr), our newest member, is the mother of a 6 year old daughter who has a 7-8 mm ASD. She is weighing the cath procedure as an option, however is feeling anxious about the metal side effects. If anyone has any insights, reassurance, etc. your words will be very very welcome!!
Hopefully some of these will be of assistance to you. Please let us know if you have any further questions, and we would like to support you throughout this whole process. Your daughter is lucky to have you by her side, and we are rooting for you both
All the very best and I am keeping you in my thoughts.
I had the robotic surgery for my ASD. I discovered I was allergic to nickel and did not want to take a chance side effects. I got out of surgery with a 5 inch incision on my right side on my chest. The doctor said it was still considered an open heart surgery. I thought it was going to be 5 small incisions, did not expect the larger one. The most difficult part was the nerves healing on my right side. It took about 6 weeks to heal and I am still numb in the area. It has been 3 years since my surgery. I discovered an easy way to test if you are allergic to nickel. Get a 5 cent nickel coin, wash it, tape it to your wrist and if you are going to have a reaction to the metal it will show up within 24 hours. My previous doctor tried to pressure me into getting the other surgery because the hospital he worked at did not have the robotic surgery. Hope this helps! M
Thank you for your insight @skydiver1967 ! That is something I’d never thought of. Now, could it be possible for someone to not have any flareups when Nickel is put on their skin, but have a reaction when a device is inserted in their heart? From your experience, did any of your physicians suggest ways of making sure? Whatever the case, that seems a very interesting suggestion, so thank you for your response.
Sorry to hear that the region of your incision feels numb to this date. From looking at your profile from 2018 (which seems eons ago with the pandemic), you mention that you were hoping to “getting back to my life, traveling, hiking, enjoying the outdoors”. How was your recovery @skydiver1967 ? People are often anxious also about how soon they can recover, if at all. Would love to hear if you have been able to get back to the things you love, at whatever capacity!
@Elizclwtr Hello! Welcome to the community. Your daughter is super lucky to have discovered her ASD at such a young age. Getting it fixed now will GREATLY improve her chances of living a completely normal life to a normal life expectancy without complications.
I know how scary it is to be dealing with this, and I am sure she is also quite nervous. I had my 19mm ASD closed via cath procedure using a 37mm Gore Cardioform device just this last September and I am nearly fully recovered. I am 34 years old so it’s been taking me a bit to get back to battery. I’ll tell you though I am feeling MUCH better now than I have been feeling for the last couple of years living with the horrible ASD symptoms (shortness of breath, dizziness, etc).
My doctor is Jamil Aboulhosn, the head of the Adult Congenital Heart Disease office at UCLA Medical. Before we decided to go with the cath procedure I taped a cleaned nickel to the inside of my forearm for four straight days. I didn’t observe any reaction. He was satisfied that this was enough to determine if I was going to have trouble with the device allergy-wise. He told me that he’s only observed a couple of adverse allergic reactions in patients after getting the device implanted out of the hundreds of procedures he’s performed.
I would say that ultimately your pediatric cardiologist is going to give you the best advice. But hopefully my experience helps give you peace of mind.
I have done the asd closure and suffered for 8 years with migraines as i later realised i had a nickel allergy to the ASD device. If you are going in for it please do blood and prick tests for nickel and titanium allergies before proceeding, else open heart surgery is the best option.
I had my ASD repaired with Amplatzer device 5 years ago in my middle age and feeling much better, with the only strange side effect of migraine auras scotomas. Besides the migraines, I am grateful not to have needed to go on bypass for an open heart procedure or robotic procedure as that also requires bypass.
As your daughter is getting this fixed as a young girl, she should have excellent results and have a heart that lasts her until very old age! It is best to fix the ASDs in young age for best long term results. The Amplatzer devices have been used since 1996 and there are many studies comparing the percutaneous and open ASD closure outcomes.
A percutaneous procedure is the procedure of choice in our modern times, as minimal pain, minimal complications (with extremely low risk of erosion), short procedure, very fast recovery and no bypass machine, with excellent long term results, when compared to open.
Contraindications to percutaneous procedure is if the anatomy of the ASD warrants an open procedure and this is where your cardiologist has the expertise and best advice.
If your daughter does not have a nickel allergy, then the best option would be percutaneous ASD closure, in my opinion.
Best of luck, the toughest part is the unknown until you actually go through it.
