So after 9 months of waiting I finally went into hospital for my PFO Closure procedure (hole in heart identified following stroke).
But after going through most of the procedure - no success. The team told me they were unable to find a hole in my heart and I now need to go back for more tests and scans. How is this possible? The medical team told me it did occasionally happen but not that often.
I feel like I am back to square one. At the time of my stroke, the PFO was the one thing that had been identified as to why I may have had a stroke - Apart from this, I had been given a completely clean bill of health and so it was at least âan answerâ to that question of why me, but now I feel a bit lost again if I am being honest.
Isnât it good news that you donât have a hole in heart?
Many of us never have an explanation of the cause
Perhaps trust in your meds and medical team to have addressed your risk factors and concentrate on life post stroke?
Clearly a message thatâs less satisfactory than one would entirely like possibly the best available?
Itâs the roller coaster. Youâre right I should be ecstatic that I donât, probably, have a hole in my heart. I could have coped (eventually, I think) with not knowing a cause but to be told one thing and then 9 months later to be told something else is draining. Itâs the uncertainty and questions again - I probably donât have a hole in my heart (the consultant told me, if it was there they would have found it) but the fact they are now reviewing the original echo cardiogram and I have to go for new heart tests just puts that doubt and uncertainty back into my head - if not a hole, perhaps something else, or a hole elsewhere. I wonât hide the fact that I have and continue to really struggle mentally post stroke and Iâd really hoped this would be the last thing to sort and I could start trying to look forward.
The important thing is that you do everything you can to reduce your risk level. No-one can bring the level down to zero, but we can all make lifestyle changes and take the right meds.
@Rufus I can understand how confusing that must be for you. Itâs good that you donât have a hole in your heart and also good that they are sending you for some more tests to double check things.
I know when babies are born with holes in their heart rlthey can close themselves. I wonder if that might have happened in your case.
Hopefully the further tests will give you the answers you need. In the meantime try not to stress about. Reduce your lifestyle risk factors as much as you can & then youâre doing as much as you can do.
My stroke was due to a PFO also, so I have a little knowledge of the subject but I am not a medical expert.
When I was in hospital none of the echo scans, X-rays etc showed any problem. Like you I was fit an healthy, looked after myself etc. I was discharged after 7 days but with an appointment to attend the cardiac clinic the next week for an ECHO BUBBLE SCAN. This is a scan that is done when a PFO is suspected or nothing found with the initial batch of more general tests. Did you have this type of test? See below for info link.
Mine showed clearly the âleakâ between the atriums, which I had successfully had closed in 2022.
@Mrs5K you are right that the flap/valve is there when we are all babies. They usually close naturally within a few weeks. They donât close themselves after this time.
An amazingly high number of people will have a PFO - about 25% - most of which wonât have any issues. This link (american clinic I think) is clearly written for background info. Patent Foramen Ovale (PFO): Symptoms, Causes & Treatment
As said above, If they couldnât find it Iâd take that as as a positive, hope you get on OK with further scans and rehab. I am three years post stroke now, life is good, ups and downs mentally but you are not alone and always welcome here.
Yes I had an echo cardiogram - and that was what apparently showed I had a PFO. Which is why I am at a loss to understand how 9 months later they could not locate any hole during keyhole surgery. They repeated the tests whilst I was having keyhole surgery in an attempt to locate any leak but without success.
I am now waiting for the original echocardiogram to be reviewed by the cardiology team who carried out the PFO procedure before they decide what next, if anything to do. I understand the options are 1) decide there never was a hole and a mistake was made or 2) decide there is a problem somewhere and go for further heart scans - a trans oesophageal echo which can look at the whole heart in more detail as well as CT scans.
I see! Waiting is never easy but hopefully get some a more definitive answer one way or the other. Hang in there and let use know how things progress, but only if you want to.
