Hello Troops.
First time poster here.
I had a relatively mild pontine stroke seven and a half weeks ago, presumably in my sleep because I woke up with heavy limbs and slightly slurred speech.
I was in hospital for just two nights and prescribed clopidogrel, amlodipine and atorvastatin for life.
After two sessions, the OT said my progress was such that I needn’t go again, but to call her if I had any difficulties or concerns.
I just had my seven week review with the consultant and he said, other than the acute right hemipontine infarct, all scans/tests were good/ normal.
Going forward he recommends a 24hr bp monitor and a PFO test, to get to the bottom of why I had the stroke.
This hole in the heart business scares the bejizzle out of me.
He told me to Google PFO, and I have, plus I’ve looked it up on this forum.
It’s all I can think about.
Long story short, I had some horrible experiences in hospitals, as child and as an adolescent, and there’s no way I’m ever letting anyone near my naked/semi naked self ever, ever, ever again. Ever. General anaesthetic is also a hard pass.
I don’t want another stroke, obviously, and I’m not susceptible to therapy.
I just wondered if anyone else here has any current experience and/or advice regarding PFOs, whether they had them closed or chose not to, long term outcome either way, anything really.
As a woman, particularly with the experiences I’ve had, it’s not an easy decision, but I do want to have all the facts at my fingertips.
The consultant mentioned ‘a scan with an injection’ as the test for the PFO. I didn’t get the chance to ask more because he was called to A&E.
There seems to be more than one test this could be? Any advice greatly appreciated xxx
Beneath all the bluster, I’m a very frightened human.
Ji @HighHopes & welcome to the community. Sorry to hear of your stroke. Hope you are doing ok other than your anxieties.
A lot of people live with holes in their heart & never know about it. At this stage you don’t know you have one & there’s a possibility you don’t. It is a pretty standard test after a stroke. I had the test done & it showed no hole. The test itself is painless. I had a canula out in my arm, which they put some stuff in & I had to cough, sniff, hold my breath etc do they could see if any bubbles passed through my heart. It was fairly quick & painless. It is an ultrasound scan.
I would suggest you tell them anout your anxieties & they can help manage you better. It may be they can do something different or they decide that the risk is low & you don’t need it done. But you’ll only know if you talk to them. Whilst you are waiting speak to your GP who can explain it all to you aswell.
Sending best wishes
Ann
thanks for good information for PFO
@HighHopes this is what iI had also never had any issues before the stroke, may well have gone the rest of my life without knowing but here we are 
So, a year after the stroke and diagnosis i had a closure procedure at Bart’s in London. In for just one day. No issues, and very supportive consultant who explained everything carefully in pre-op calls and on the day.
When i had the stroke the stroke team consultant explained that the biggest preventer until a final diagnosis and remedial actions (whatever they may have been at the time) was the Colpidogrel. Once taking that the likelihood is very much reduced. Once the PFO was diagnosed, dealing with that would be the last few percent of risk reduction. Of course it doesn’t prevent a stroke in the future but it removes that “mechanism of injury” for the future.
For a period it was on my mind all the time, but as life came back, it’s on the mind much less and following the closure even less so, just getting on with as much living as i can.
Feel free to get in touch if you want to,
PS My childhood home went by the name of… High Hopes 
Thank you @EssexPhil, I’m glad your procedure went well.
Did you have the keyhole surgery or up through the groin?
You must be posh - my childhood home was called ‘8’ 
Glad your scan was all clear, Ann. 
Thanks for the info re the test, that’s good to know. xxx
Hello @HighHopes - the only thing I can offer you is a welcome to this forum and to wish you all the best.
So welcome and all the best 
I happen to believe things happen as if they are meant to happen and no matter what you do, they will happen. This might sound crazy, but it is something I have thought about long and hard and time and again, I end up coming back to the same conclusion. Things are meant to happen and they will happen.
Despite that, being a human being, I still do things that I think will benefit me and change the course of my destiny. It’s like when people say you make your own luck etc etc. These things are all very well until you experience things and then you cannot explain them. Strokes are one such thing - they happen to anyone and at any time. You could be super fit and healthy (on the outside) and yet be hit. You can take preventative actions and medications and yet you can still be hit.
What I do believe is being worried or frightened doesn’t help and so I try not be frightened or worry about things I have no control over. I don’t believe I can control whether I have a stroke or not for the reasons cited above.
Of course, I am pleased that before I wrote my comments, other more sensible responses have been posted and so you will have plenty to think about and work with.
As far as I am aware there is plenty of scope for you to gather all the facts you need to help you make the decision you need to make.
Happy researching
Namaste|
Hi @HighHopes
Welcome to the community, I’m sorry to hear about your stroke.
A PFO is fairly common and lots of stroke survivors have these and have either chosen to have them closed or have left them as they are. As @Mrs5K has mentioned the test is relatively straight forward, however I can see that you have a lot of anxiety around hospitals and procedures, I would suggest speaking with the hospital and the department that would be doing the scan to let them know your worries ahead of going for the test. This may help put your mind at rest.
There are also patient stories about PFO on the Different Strokes website. Which may also be helpful for you to have a read of.
I hope you’ll find the community helpful, if you need anything whilst you’re using the Online Community, please don’t hesitate to tag me using the @ symbol and my username.
Anna
Yes, keyhole via vein in the groin. I was blown away by how straightforward it was. Bart’s has a whole suite of theatres for all sorts of procedures. While i was there, at least one other PFO, pacemaker replacements, stents etc.
I had my PFO closed 11 years ago. Consultant said 25% of us have a PFO and despite my brother having had stroke and being diagnosed with a PFO there’s no evidence of it being hereditary.
Don’t mind admitting that beforehand I was terrified of what the procedure might involve. I have a friend who had his done 8 years earlier and they said the worst / hardest bit was having the endoscopy.
All in the procedure took 20 minutes! As they don’t for definite what caused the clot they’ve kept me on Clopidogrel and a statin.
Apparently my brother (we’re not close) was told by his consultant that PFO closure is risky and therefore has been on warfarin for over 15 years. I’ve since discussed the risks of PFO with several consultants and all except one (who couldn’t tell me what the risks were) they’ve all said the risks are no more than there is with any procedure.