Hi. Does anyone have any experience with having either a fenestrated atrial septum or the Amplatzer cribiform device? I just found out today that my son has fenestrated ASD. I had been speaking with a nurse practioner at Children's Hospital with questions regarding the cath lab procedure they wanted to do on my son. I spoke with her this morning asking about the Gore Helex, as I have been weary of the ASO mainly due it's risk of long term complications regarding the wire mesh. She then called me back a couple hours later telling me that my son has a fenestrated ASD, and asked if I was aware of that. I am pretty perturbed that this is the first I am hearing of this. He is five and has been going to the cardiologist since he was a baby. Can anyone help with any advice? I am feeling pretty frustrated and overwhelmed at this point. Also has anyone had OHS for fenestrated atrial septum??? Thanks to anyone who can share their stories.
fenestrated having one or more openings, like a window.
I have this. Had it closed with a Gore Helex. What size is the ASD?
I do not know about OHS but I would think it would be better in the long run to NOT get a Amplazer or Helex put in your son’s heart. There are just so many unknowns and the knowns that are coming out do not sound to good to me. This is just my opinion.
I am much older but if I had read more I would not have had this type of closure. Has the doctor talked to you about OHS? They did not mention it to me and I think it was because the doctor I was going to did not do it.
Good luck and ask many questions and if it looks and feel like they are putting you off and not answering all your qnuestions I feel like they are, so you will just have to keep asking.
Hi Fay, thanks for your reply. From my research, my understanding is the that the Helex carries it with it basically none of the long term complications that the amplatzer does, the helex has alot less metal and therefore the risk of erosion isn't there. Are you unhappy with your Helex device? I am really hoping that maybe the Helex is an option for him... I know that they do use the helex for fenestrated asd's, i think it's just a matter of finding the right doctor. And again, thanks for your input, it's much appreciated.
The Helex has not been around long enough for there to be any long term complications. I do agree there is less metal to shift and cause erosion. There have been frame fractures where the wire has broken and caused problems.
If I had found some of the articles on the problems before I had got the Helex I do not think I would have gotten one. I feel okay so I think it is doing it's job as of now, but how long will that be maybe long enough for me maybe not.
You will just have to weigh the pros and cons in your situation.
Hi Fay, I spoke to a cardiologist at a different hospital today and he is going to try to use the Helex for my son instead of the Amplatzer. I'm just wondering if you can direct me to some of the articles you have read about the long term complications of the Helex? From everything I can find, I haven't seen any adverse affects with use of the Helex. No reports of erosion and even if the wire frame is to fracture, it rarely causes any medical problem that needs attention. Correct me if i am wrong, but the helex is only about 5 years newer than the amplatzer??? What size Helex do you have? Thanks so much for sharing you experiences!!!
Hi Lorax,
this is the diagnosis my sister received fenestrated asd but they called it “Swiss cheeze” asd meaning many holes.we are still asking surgents and cardiologists about OHS alternative device but we have no news yet.I hope everything goes well for your family and please keep us posted with any updates and information you have.i will look if I have any article I could send you about helex.
Hi Maria,
From the echo, my son has one defect with a smaller one right beside it. They are willing to try the Helex, one hospital wanted to use the Amplatzer cribiform and if i was unable to find someone willing to use the Helex, surgery would've been my next option. With the Helex there have been no reports of erosion, as it is made using a wire frame covered in a soft material. Is the Helex an option for your sister? I would speak with different cardiologists until you found one who is at least willing to give the Helex a try. It has a much lower nickel content, and only an extremely small piece of the wire that is used is not covered with the soft stuff the patch is made with. The cardiologist we just saw said we could try the Helex and that if we were unable to place the device in him at this time we would wait about 4 years, try the Helex again, and if that doesn't work, then do surgery. i am really happy with this course of action. It took me a while to find a cardiologist who was willing to take my concerns and opinions into consideration. Best wishes to you and your dear sister.
Hi Lorax!thanks for the quick answers.we are waiting to hear if it is even possible with a device or if OHS is the only option.it feels like its taking forever…
my sister is 27 and she needs to have it closed since her heart is big although functioning well and hasn’t developed pulmonary hypertension yet.she has done a chest x ray,one normal ultrasound,one 3d ultrasound,one transesofageal ultrasound,a magnetic resonance of the heart, a stress test.We have talked to 3 surgents,2 kardiologists that place devices and 3 kardiologists but still have no clear answear so it’s very frustrating…thank u for the information about Helex,I will definitely ask and keep u posted if I get any other usefull information about fenestrated asd!
thanks again!
Hi
I found information about the Helex not sealing in some cases and it not being covered over by tissue. I did not save the information and I can not find it now. I will send you the sites when I find them. I feel like of the two types it is the best right now. . I wish you and yours good luck.
lorax112 said:
Hi Fay, I spoke to a cardiologist at a different hospital today and he is going to try to use the Helex for my son instead of the Amplatzer. I'm just wondering if you can direct me to some of the articles you have read about the long term complications of the Helex? From everything I can find, I haven't seen any adverse affects with use of the Helex. No reports of erosion and even if the wire frame is to fracture, it rarely causes any medical problem that needs attention. Correct me if i am wrong, but the helex is only about 5 years newer than the amplatzer??? What size Helex do you have? Thanks so much for sharing you experiences!!!