Today I had a bubble echocardiogram following a stoke last October at the age of 46. They confirmed I have a hole in my heart and as a blood clot must have passed through the heart it ended up in my brain causing the stroke. This is all difficult to take in. More confusing is the treatment I have read about online. Has anyone been through similar and what are the options as I am not seeing my Consultant for several weeks?
My stroke was in January 2018 at the age of 49. I have also been diagnosed with a PFO very much like the other comments here. I experienced the uncertainty of a bubble echocardiogram, and subsequently a TOE - The worst part of all of this is the lead-up and the expectation. The unknown of the tests is in itself really quite scary.
On the positive side up to 1 in 4 people have a PFO and never know it. On the other hand, if you have a stroke, there is about a 50% chance that you will be diagnosed with a PFO. There seems to be 2 ways forward from this point (I am not a cardiologist)
1) The current NHS approach is to only medicate to avoid further clots - this might change in 2019 as a result of recent studies - they may start to repair stroke related PFOs again.
2) If you can pay for, or have insurance for a PFO closure it is recommended (by my consultant, and in my case) as recent studies show that it about halves the already quite small chance of a repeat stroke. As a young person, you have more years to live, so the more prevention you can apply, the better.
I am having a PFO closure procedure in about 2 weeks time in early May. Wish me luck :)
Thanks for contacting me. Hope it goes well closing the hole, keep me updated. I am looking into options at the moment as I don't have insurance to cover it and have the feeling surgery is the better option for my age. The whole process has been a nightmare with lost MRI's and then waiting ages between appointments. My stroke was back in October and luckily I am recovering well physically. Mentally is completely different and tiredness is a problem.
I had a DVT on a long haul flight over 2 years ago when I was 63. Like you, a clot travelled through a PFO to my brain causing a stroke. This was diagnosed in Australia, where there was a discussion as to whether the hole should be closed or left alone. There was no consensus. We travelled back to Glasgow and met with a cardiac consultant for a long discussion. She told us that when she became a consultant 10 years before, they had performed 147 closures in one year, whereas in the last year they had performed only one! As they do nowadays, she said the choice was mine. She didn't openly advise me, but the flavour of the discussion led me to believe that she would be advising leaving things alone. The risk of Atrial Fibulation after closure was highlighted. I decided against closure, but she told me that if I changed my mind at any time to contact her. I had no sense that she was trying to save money by not closing. She told me to take the medication - Apixaban blood thinner - and live my life as normal.
It seems like you hear different advice from different medics. The consultant told me that at a European conference recently, one Italian doctor said he would close up every hole - even in his dog!!! So who knows. I think as one of the previous contributors said, we are at low risk of another stroke, once diagnosed and on medication.
I hope you are adjusting to all this stuff, Debbie. Ups and downs eh?
hi i had a stroke 8 years ago i have a hole in the heart i am on warfarin for the rest of my life it does not stop me from doing anything if the hole is big you my have a operation i have spoken to people that have had the procedure they said it was ok but most stroke survivors do not have a operation . you will have to be on blood thinners for life no big thing just dont worry about it the positive thing is you now know why you had a stroke most people dont know why they had a stroke this makes them stress which can be bad
This is good stuff Robert. My story is similar to yours. When they diagnosed the hole in my heart, the consultant actually said "This is good news because we know why you had a stroke - most people don't". I thought he was joking but it turns out he wasn't. Now I'm on blood thinners and living pretty normally. From time to time I think about having a PFO and I get nervous for a wee while. But then I remember the "good news" I was told.
All the best Robert
Thanks for this and all sounds interesting. I think it is hard when you hear of cases in the media where they had the hole repaired. I see my consultant next week as well but she specialises in stroke and wonder like you whether a cardiologist would be better to check my medication. Must have been a tricky decision for you at the time but sounds like you made the right one. You are right about the ups and downs feels like I have been on a rollercoaster for months.
Thanks for this I will remember the advice as you are right i know why it happened now and need to start moving forward and take some control back.
Well, I'm done... Hole closed with minimal fuss and only a small amount of discomfiort. In theory that's my chance of a recurrent stroke about halved each year (over and above just taking the drugs), and as a young victim that sounded like a great idea!
I was expecting some the various side effects of the closure such as AF and occasional chest pain but have (touch wood) felt nothing at-all; The side effects are meant to be temporary anyway. I have a follow-up consult/echocardiogram in 2 weeks and I am resting for 2 days due to the groin wound where they go in.
Wow all sounds good and definitely the way to go. Was wondering how it went. I am trying to find out cost privately as I feel for me the best option is closure too. Nightmare trying to find out and now have consultant cost but need hospital costs. My consultant is still saying lifelong medication and NHS would not consider until I have multiple strokes. Hope your recovery continues to go well and make the most of your 2 days of rest.
Hi, I have just seen your post. hope you are recovering well from your procedure. I was 34 when I had a stroke in Dec 2016. I had similar symtoms earlier this year and thankfully met a different consultant who ordered the bubble study. It was positive and quite large so saw a cardiologist who has put me on a waiting list for closure when the nhs get funding.
Id love to hear how you found it and how you recovery is going. Do you have a blood clotting disorder too? I have Factor 5 Leiden.
I found out today that I have had another few silent strokes since my previous mri 6 months ago. All quite scary.
Wow! I would have thought that if you are having repeat strokes then the NHS would be willing to do something about it. I don't have a clotting isue, they just think it was spontaneous and bad luck, all my blood tests came back normal.
The PFO closure was very simple - I was under a general, so basically woke up and was all fixed. Most of my symptoms pre-closure were anxiety related and cleared up. 3 days after I was able to get around slowly and with a bit of a limp, and 7 days after I was completely fine. I've had no issues at-all though the bruises were amazing and lasted over a month :)
My PFO was "only" 4 to 5mm, but the Bubble study did show spontaneous passage through the hole, so worth closing.
Thank you for replying! It’s good to hear from you. I’m pleased it all went well and to hear it all went smoothly. Where in the uk do you live? Apparently it’s a bit of a postcode lottery and unfortunately I’m in the wrong one. I feel much better now, I have been quite worried as my consultant wasn’t very open and I found it difficult to talk to him.
Thank you again for your response, I wish you all the best and it’s been very helpful to me.
I was fortunate to have a) Private health insurance from work and b) To be near the Chiltern Hills Heart Clinic, both of which have been hugely helpful.
I had a stroke 3 weeks ago, aged 41, am waiting to have the bubble test, don't know when it will be, just waiting!
It does all take time unfortunately and I struggled with the shock of it all and the waiting around and unknown. Hopefully you won't have to wait too much longer.
I've just seen your post. Hope things are going well. I was 47 when I had my Stroke in Feb'17. I was diagnosed with PFO, as some of the replies say 1 in 4 people have it. Most go un-noticed.
The NHS won't fund the closure, however my consultant applied to a Trust to get mine done. I had mine closed May'18 and there has been a massive difference to my physical ability to do things. So I would definalty recommend getting it closed if you can. There is still a risk of a stroke when having it closed but I've been given asprin to take on top of the Clopidogrel to thin my blood further, which I have to take for 6 months. I can stop the asprin next month, but I'll still have to take the Clopidogrel for the rest of my life.
I had my pfo closure in 2009, a year or so after my stroke. They were doing it on the NHS at the time, there were many people like me in their 20s having the same procedure. It was scary, but it took one day, and weirdly the only difference I've noticed is that my chest pain is less, and my feet are warmer! I think it can be worth it for piece of mind, my stroke was caused by the hole apparently. It sucks they no longer do it on NHS but I'd deffo recommend it. Xxx
It's very quick, after for a few weeks I felt very tired, you might want to position yourself nearer bathrooms or to not need stairs etc for a few days when your home, but other than that it's not so bad at all. Wishing you luck! xxMxx