T.O.E shows hole in heart.

[MJOR1981]

Evening, just looking for some advice from anyone who may have already been through it..

I had a heart attack in the gym in July. I had a blood clot in my distal LAD. After laying in the hospital for a week and undergoing an angiogram, bubble contrast, and another angiogram with a laser which I forget what they said it was.. I had a queue of cardiologists every morning telling me they have no idea why I had a heart attack. The only good news through all of it was my heart was pristine and no signs of CHD.

After a short while the good news of no CHD became an obsession about what the reason could of been that I would have a heart attack at 39 when I lived what would be seen as a healthy life style.

Last week my TOE showed a hole in the heart, I am waiting for a full report but remember the doctor doing the procedure saying it will probably need to be closed.

Has anyone had a similar experience? How long do you have to wait for the closure?

[Keyhole]

Hello, I can imagine your concern and also need for more information. In August 2019 my Son, aged 27 suffered a stroke after a clot passed through his heart. Like you, he underwent many tests that resulted in an initial PFO "misdiagnosis". After a failed attempt to close the hole, the TOE revealed a significant atrial septal defect of 1.8cm! In October he had an ASD closure operation, recovered well and quickly, he now describes his fitness as turbo charged! He had effectively had a heart condition since birth and we did not know. The most interesting thing that one consultant said was that where there is 1 defect, look for another. It turns out that my Son has also the Artery of percheron ( a single artery into the brain). This could be why he went into a coma for 7 hours, the clot hit the midbrain that controls consciousness and could have saved him the damage from the stroke. I can only share from this experience and hope that it provides some re-assurance. Please ask if you need any more information. Christine

[ScoobyDoo71]

Sorry to hear you have had a tough time, hopefully this diagnosis may at least provide some explanation as to what’s been happening. Could I ask what led to you having the TOE and wondering why the previous tests didn’t pick this hole up ? I ask as I have felt like I’ve been on a merry go round over last few years and despite things getting worse and my last CPET significantly worse showing cardiac cause and clear angiograms I’m still no nearer getting an answer.

I was born with congenital heart disease and had surgery as a child they did talk about finding a hole then but no further hole mentioned so presumed it closed itself . However I’m not convinced and wonder if like you despite going through similar tests a TOE may uncover more ?

If you do need a repair I would get an opinion from an Adult congenital heart disease centre specialist surgeon as they are the experts in this field. If you go in the Somerville foundation website they have a list of the centres in the U.K. Good Luck with everything.

[MJOR1981]

Thanks for the message Christine, I hope your son is better now and I look forward to turbo charged training.

Hi Scooby,

I had 2 angiograms, 2 electrocardiograms of which 1 had bubble contrast, and an MRI. All came back inconclusive. My cardiologist was adamant that the clot couldn’t of got to where it was with out a hole.

TOE found it straight away.

Good luck, I hope you get some answers, I know how frustrating it is not knowing. My GP compared it to being struck by lightening which I didn’t find very useful!

Once you know what you are fighting everything becomes clearer 👍

[Flossie_Dale]

I know things are different now, but my mother was born with a hole in the heart. Now it would have been closed in childhood but no such ops existed in the 1920s, so she just had a sheltered and overindulged childhood my grandparents having been advised she would not survive to her teens) and had to go to a private school as state schools wouldn't take the risk. She was told she should not have children (but here I am) and served for many years as a patient in cardiology exams at Westminster Hospital for a generation of medics who hadn't heard a heartbeat like hers once childhood repairs became the norm. She knew it would shorten her life, but as she was nearly 90 when she died I dread to think how long she would have lived had her heart been perfect. Hope this helps to reassure you!

[MJOR1981]

Thanks Flossie, your mum had a great innings 👍 I hope I get somewhere near that total

[RufusScamp]

When my mother's neighbour died, in his seventies, after a career in heavy engineering, they found he had two holes in the heart, and said he should have been an invalid. Don't worry too much, but take things fairly easy.