Open chest ASD closure

[Mills27]

Hi everyone, I was diagnosed with large Atrial Septum Defect (ASD) last year, after an extremely long diagnostic journey.

After my diagnosis I was seen by a cardiothoracic surgeon who in light of my age, decided to refer me to another Trust, in which I was supposed to have my defect closed via percutaneous closure (as specialists in percutaneous closure).

However, despite they have attempted this, they have failed because of the particular location of the defect and its irregular anatomy. Therefore I will be listed to have open chest surgery to close my ASD defect.

Does anybody have experience of having ASD defect closed via such an invasive procedure? Is the scar impacting in your quality of life?

Also, I am tempted to re-contact the cardiothoracic surgeon that first visited me after my diagnosis as he was mentioning the possibility of attempting closing the defect using minimal invasive surgery. Has anyone had experience with this type of surgery?

Ultimately, I am very interested in considering any research studies involving ASD. Is anyone aware of projects involving adults suffering with ASD?

Thank you.

[10gingercats]

I have a 'mis shaped' heart...so said and had an ASD closure when I was c 72/3 via my groin.I think a lot also depends on your more general health/comobitity and age.There is also the possibilty of a Tavi,I guess which would be less invasive than a full open heart surgical op.

[Mills27 in reply to 10gingercats]

Hi! Thank you for your reply. Thankfully I am relatively young - in my early 30s - and I don’t have any major health problem currently. Is TAVI transcatheter closure? If yes - they did try this type of surgery, passing through the vein in the groin, but they were unsuccessful.

[10gingercats in reply to Mills27]

No. TAVI is where they go in via a smaller hole,I believe usually fron the side, no breaking of sternum bones involved so less invasive than open heart surgery.You might ask your cardio. about it or possibly someone here may respond.Mine was via my groin and quite straight forward. I had a strong sedative and top up morphine but was awake during the procedure. It was a one day job...in at 7am and out and homeward by 9 pm.

[Blearyeyed]

It may be sensible and worth contacting the original surgeon as you were considering in your post to get their point of view and see if the options they discussed may still be open to you done by them.It's worth it for no other reason than to get as most info on your options as you can to help you make your choices.

I'm sure many people whom have had various types of open heart surgery will reply to you soon and hopefully help you to feel more reassured about the procedure.

It's a lot to cope with mentally , no matter how strong you are as a person , and especially if it occurs when you are younger because it's so unexpected too. But keep posting with any questions or if you are feeling anxious and need to talk about any worry , no matter how small and we will all be here to support you along the way.

I haven't had open heart surgery , but I have had other invasive surgeries with scarring in visible places.

I know many people discuss their scars on the forum.

Many find that it is hardly visible at all after healing time and the benefits of having a new energy for life certainly makes up for it.

Many of us , no matter where are scars are , decide to see it not as a scar but a mark of strength and survival, a reminder, beautiful in its own way, of how fortunate we were to get treated and get the chance to live life to the fullest point we can again.

The most important thing for you to think about now though is how to find out what all of your options are and which one you want to take , and that will require a few chats with your doctor's and surgeons. Take care and keep us posted , Bee

[Mills27 in reply to Blearyeyed]

Hi Bee,

Thank you for your kind words. I’ll try to contact the consultant of the other Trust.

Your words really helped me, thank you. ❤️

[andy110519]

Hi, I've had OHS, for valve replacement, and the scar has not been a problem for me. It was over 4 years ago when I was 49. I do as much physical activity now as prior to OHS including running, swimming and munroes. I struggle to sleep on my left, normally gets uncomfortable, and occasionally I get some chest discomfort but otherwise OK. Take car.

Andy

[Mills27 in reply to andy110519]

Hi Andy,

Thank you for sharing your experience. It is very helpful.

[lindainglis]

I Have had open heart surgery for ASD back in 2014 with great success ,they did try to do through the groin first but was to wide a hole so it had to be ohs ,took me a while to recover but i am very little medication afterwards apixaban and bisoprol which is for AF I Have due to the ohs but I m nearly 10 years on and i am 67 years old with great energy

[Mills27 in reply to lindainglis]

Hi Lindainglis,

Thank you for sharing your experience with OHS, that is reassuring.

[LadyZ13]

Hello hello! I had OHS for ASD closure in June of this year. I was 38 and had no symptoms. It was a lot to get my head around but, speaking as someone still in recovery, it's OK. I was back at work (desk job) at 8 weeks and able to do a lot after 3 months. I'm now rebuilding my fitness and confidence. If it helps, I started a blog when I was first diagnosed and have charted everything that's happened since that conversation with the ACHD consultant in December 2022. The link is in my bio.

I too discovered a clinic who claimed to be able to close all ASDs through keyhole and for a moment clung to that as hope that I could dodge the OHS. But then I had a heart attack in March as a clot went through the hole and I was referred quickly for the surgery. I didn't want to leave the hole open any longer than necessary so abandoned hunting for alternatives and went along with the referral. I also felt that keyhole came with other risks - it's very fiddly and stitching a hole closed in the middle of the heart without nicking anything around it when you can't 'see' must be quite a risk! I know it's offered in some other countries. There is a FB group for people with ASD in adulthood - are you on that? It might be useful.

Hope some of that helps.

[Mills27 in reply to LadyZ13]

Hi! Thank you so much for sharing this.

I had a look at your blog and your previous posts and I can't tell you how helpful they have been. Thank you very much 🤍

I have also requested to join two FB groups for ASD and I am sure that will help in supporting me in my journey.

[LadyZ13 in reply to Mills27]

Super, I'm so glad what I've shared has been helpful to you. Shout if there's anything else you need.

[Digger0]

I presume you are under the Adult Congenital Heart Team for your area? northwestchdnetwork.nhs.uk I'm sure that I read that the Liverpool Heart & Chest were pioneering open heart surgery with just cutting the cartilage on the ribs near the top of the chest. This was last year or before, will see if I can find it.

[Mills27 in reply to Digger0]

Hi Diggr0,

Thanks for replying. I’ll have a look at their website and try to reach out

[g8vbd]

I had OHS last October for a large Atrial Septum Defect and a faulty valve, as soon as I could after surgery I was up and walking around - albeit very slowly and leaning against the wall. I went in on a Wednesday and I think I was out the following Tuesday, complete with walking stick. I walked every day and gradually increased the steps taken. At the moment I'm still trying to up my steps and reduce my food intake to loose some weight.

As for the scarring, I already have a facial scar from being born with a cleft lip, so another scar doesn't make a blind bit of difference and I'm actually quite proud of my scars they are part of my journey in life through thick and thin.

[Mills27 in reply to g8vbd]

Hi g8vdd,

Thank you for sharing your experience. 🙂