PFO - Has anyone had one closed?
Discussion
Evening all,
Following on from my other thread about suffering a stroke at only 33 I now have a reason why.
Following an echo bubble today I have had it confirmed I have a PFO, has anyone had one closed. I'm hoping AXA cover this as I'm lead to believe the NHS don't do it that often.
Any feedback would be welcome.
Following on from my other thread about suffering a stroke at only 33 I now have a reason why.
Following an echo bubble today I have had it confirmed I have a PFO, has anyone had one closed. I'm hoping AXA cover this as I'm lead to believe the NHS don't do it that often.
Any feedback would be welcome.
I don't operate on hearts, I'm a trauma/sports surgeon, but this thread interests me.
It seems that the NHS has stopped paying for percutaneous PFO closure in people who have had a stroke because there's no good evidence that it works.
https://www.england.nhs.uk/commissioning/wp-conten...
Quoted: "The single RCT so far does not demonstrate clinical benefit
from the routine closure of PFOs in patients with prior stroke"
It seems that the NHS has stopped paying for percutaneous PFO closure in people who have had a stroke because there's no good evidence that it works.
https://www.england.nhs.uk/commissioning/wp-conten...
Quoted: "The single RCT so far does not demonstrate clinical benefit
from the routine closure of PFOs in patients with prior stroke"
Edited by The_Doc on Friday 25th August 21:00
My cardiologist is of the opinion it would be best if it was closed, he has now referred me to a specialist at the QE Birmingham.
At the moment my private medical seem to have no issues paying for it but I do understand there are risks for it been done.
My fear is if I don't have it done I feel like it's just a waiting game for the next stroke which I might not be so lucky with.
At the moment my private medical seem to have no issues paying for it but I do understand there are risks for it been done.
My fear is if I don't have it done I feel like it's just a waiting game for the next stroke which I might not be so lucky with.
Andrew-3ha0d said:
My cardiologist is of the opinion it would be best if it was closed, he has now referred me to a specialist at the QE Birmingham.
At the moment my private medical seem to have no issues paying for it but I do understand there are risks for it been done.
My fear is if I don't have it done I feel like it's just a waiting game for the next stroke which I might not be so lucky with.
QE Cardiology Dept. Top mob!At the moment my private medical seem to have no issues paying for it but I do understand there are risks for it been done.
My fear is if I don't have it done I feel like it's just a waiting game for the next stroke which I might not be so lucky with.
Keeping me going.
Andrew-3ha0d said:
Thanks for the input so far, yes it does seem not everyone thinks it has benefits.
Yes I have had several scans, the last one was an echo bubble showing the PFO.
I had one of these. Did you also find it slightly unnerving when the nurse injected a syringe full of air bubbles into your vein? Yes I have had several scans, the last one was an echo bubble showing the PFO.
Long time lurker (all very interesting, but never tempted me out of my Volvos!) but joined to reply to this thread.
I am a cardiologist - and though I don't personally do the procedure to close PFOs, I provide the imaging/scans for them.
The jury is still out on the best treatment for stroke and PFO. The problem is that PFO is very common - perhaps 1 in 4 of us have one - and in the vast majority of people it never causes a problem. However, given your age it is far more likely that your stroke was related to the PFO (whereas if you were in your 70s other causes would be more likely, even with your PFO).
Even if the PFO is the cause of your stroke and it is technically possible to close it, there is a spectrum of opinion on whether it is best. When I was training I thought closing PFOs was going to become the default but the trials just haven't panned out this way. These trials take a group of people with a stroke and give them one of 2 treatments - (1) close their PFO or (2) thin the blood with tablets. The trials haven't generally shown that patients getting (1) do better than those getting (2). Clearly (1) has some small risks from the procedure, and it probably slightly increases the risk of some rhythm problems in the future. However, choosing (2) means taking tablets long-term to thin the blood - not usually a problem unless you have bleeding, but some patients prefer a procedure to reduce long-term tablets.
A point less commonly covered is that, even with a PFO, the risk of another stroke if you are taking medications to thin the blood appears to be low - perhaps ~1% at 4 years (i.e. 99 in 100 people in your situation wouldn't have another stroke on just meds at 4 years) and maybe ~1.5% at 8 years. This in no way belittles what must have been a terrifying event - its just that the data struggles to show that you would be better off with a closure procedure rather than taking pills.
In practical terms I would suggest (this is absolutely no substitute for medical advice - disclaimer etc...)
- making sure that you definitely had a stroke rather than anything else (I know this sounds patronising but it can be very unclear - i.e. confirmatory scans at the time and clear documentation this was what your doctors thought at the time)
- making sure that there is no other cause for your stroke (usually done with blood tests and perhaps rhythm monitoring) though at your age the PFO is more likely to be the cause
- making sure the PFO you have from the bubble study is indeed a PFO and suitable for the procedure (that the hole can be closed with a keyhole device from the top of the leg and there is no unusual anatomy that would make it difficult) - done with an ultrasound scan from inside the gullet under sedation
- discussing with your cardiologist whether they think the procedure offers benefit over just thinning the blood - a tricky question - but I expect patients to ask me and I have this kind of discussion with them
- ensuring that if you are going to have it done, you have it done in a unit that does lots of them by somebody who does lots of them
To reiterate this isn't advice - but I think both options (procedure or pills) are reasonable options - the difference between them, based on the trials, is likely to be small. I don't know who offers PFO closure in Birmingham but it is a great unit with an excellent reputation. I am based in London and if you want to see someone there I can point you in the direction of a colleague I refer to who specialises in this. Hope this helps.
I am a cardiologist - and though I don't personally do the procedure to close PFOs, I provide the imaging/scans for them.
The jury is still out on the best treatment for stroke and PFO. The problem is that PFO is very common - perhaps 1 in 4 of us have one - and in the vast majority of people it never causes a problem. However, given your age it is far more likely that your stroke was related to the PFO (whereas if you were in your 70s other causes would be more likely, even with your PFO).
Even if the PFO is the cause of your stroke and it is technically possible to close it, there is a spectrum of opinion on whether it is best. When I was training I thought closing PFOs was going to become the default but the trials just haven't panned out this way. These trials take a group of people with a stroke and give them one of 2 treatments - (1) close their PFO or (2) thin the blood with tablets. The trials haven't generally shown that patients getting (1) do better than those getting (2). Clearly (1) has some small risks from the procedure, and it probably slightly increases the risk of some rhythm problems in the future. However, choosing (2) means taking tablets long-term to thin the blood - not usually a problem unless you have bleeding, but some patients prefer a procedure to reduce long-term tablets.
A point less commonly covered is that, even with a PFO, the risk of another stroke if you are taking medications to thin the blood appears to be low - perhaps ~1% at 4 years (i.e. 99 in 100 people in your situation wouldn't have another stroke on just meds at 4 years) and maybe ~1.5% at 8 years. This in no way belittles what must have been a terrifying event - its just that the data struggles to show that you would be better off with a closure procedure rather than taking pills.
In practical terms I would suggest (this is absolutely no substitute for medical advice - disclaimer etc...)
- making sure that you definitely had a stroke rather than anything else (I know this sounds patronising but it can be very unclear - i.e. confirmatory scans at the time and clear documentation this was what your doctors thought at the time)
- making sure that there is no other cause for your stroke (usually done with blood tests and perhaps rhythm monitoring) though at your age the PFO is more likely to be the cause
- making sure the PFO you have from the bubble study is indeed a PFO and suitable for the procedure (that the hole can be closed with a keyhole device from the top of the leg and there is no unusual anatomy that would make it difficult) - done with an ultrasound scan from inside the gullet under sedation
- discussing with your cardiologist whether they think the procedure offers benefit over just thinning the blood - a tricky question - but I expect patients to ask me and I have this kind of discussion with them
- ensuring that if you are going to have it done, you have it done in a unit that does lots of them by somebody who does lots of them
To reiterate this isn't advice - but I think both options (procedure or pills) are reasonable options - the difference between them, based on the trials, is likely to be small. I don't know who offers PFO closure in Birmingham but it is a great unit with an excellent reputation. I am based in London and if you want to see someone there I can point you in the direction of a colleague I refer to who specialises in this. Hope this helps.
Wife went through the same thing following a TIA where it was suggested breach of PFO may have been the cause. Having discussed it with our Consultant the view was the evidence base isn't there to prove permanent closure works and in fact fixing it can cause more problems with the heart - hardening of the muscles etc.
The NHS haven't 'stopped' doing them, it's just in the majority of cases the results are not conclusive and undertaking it needs to be balanced against the general health of the patient, condition of the heart and impact of future lifestyle change with medication.
Our understanding was they were the 'big breakthrough' several years ago, popular in the US as private treatments but the evidence didn't stack up.
Question to ask is can any future issue be mitigated by medication and lifestyle without fiddling about with the heart on a procedure with inconclusive results?
We went in wanting the PFO closing seeing it as the panacea and actually came out with a better option.
The NHS haven't 'stopped' doing them, it's just in the majority of cases the results are not conclusive and undertaking it needs to be balanced against the general health of the patient, condition of the heart and impact of future lifestyle change with medication.
Our understanding was they were the 'big breakthrough' several years ago, popular in the US as private treatments but the evidence didn't stack up.
Question to ask is can any future issue be mitigated by medication and lifestyle without fiddling about with the heart on a procedure with inconclusive results?
We went in wanting the PFO closing seeing it as the panacea and actually came out with a better option.
Edited by Armitage.Shanks on Monday 28th August 00:50
ikeepbuyingd5s said:
Long time lurker (all very interesting, but never tempted me out of my Volvos!) but joined to reply to this thread.
I am a cardiologist - and though I don't personally do the procedure to close PFOs, I provide the imaging/scans for them.
The jury is still out on the best treatment for stroke and PFO. The problem is that PFO is very common - perhaps 1 in 4 of us have one - and in the vast majority of people it never causes a problem. However, given your age it is far more likely that your stroke was related to the PFO (whereas if you were in your 70s other causes would be more likely, even with your PFO).
Even if the PFO is the cause of your stroke and it is technically possible to close it, there is a spectrum of opinion on whether it is best. When I was training I thought closing PFOs was going to become the default but the trials just haven't panned out this way. These trials take a group of people with a stroke and give them one of 2 treatments - (1) close their PFO or (2) thin the blood with tablets. The trials haven't generally shown that patients getting (1) do better than those getting (2). Clearly (1) has some small risks from the procedure, and it probably slightly increases the risk of some rhythm problems in the future. However, choosing (2) means taking tablets long-term to thin the blood - not usually a problem unless you have bleeding, but some patients prefer a procedure to reduce long-term tablets.
A point less commonly covered is that, even with a PFO, the risk of another stroke if you are taking medications to thin the blood appears to be low - perhaps ~1% at 4 years (i.e. 99 in 100 people in your situation wouldn't have another stroke on just meds at 4 years) and maybe ~1.5% at 8 years. This in no way belittles what must have been a terrifying event - its just that the data struggles to show that you would be better off with a closure procedure rather than taking pills.
In practical terms I would suggest (this is absolutely no substitute for medical advice - disclaimer etc...)
- making sure that you definitely had a stroke rather than anything else (I know this sounds patronising but it can be very unclear - i.e. confirmatory scans at the time and clear documentation this was what your doctors thought at the time)
- making sure that there is no other cause for your stroke (usually done with blood tests and perhaps rhythm monitoring) though at your age the PFO is more likely to be the cause
- making sure the PFO you have from the bubble study is indeed a PFO and suitable for the procedure (that the hole can be closed with a keyhole device from the top of the leg and there is no unusual anatomy that would make it difficult) - done with an ultrasound scan from inside the gullet under sedation
- discussing with your cardiologist whether they think the procedure offers benefit over just thinning the blood - a tricky question - but I expect patients to ask me and I have this kind of discussion with them
- ensuring that if you are going to have it done, you have it done in a unit that does lots of them by somebody who does lots of them
To reiterate this isn't advice - but I think both options (procedure or pills) are reasonable options - the difference between them, based on the trials, is likely to be small. I don't know who offers PFO closure in Birmingham but it is a great unit with an excellent reputation. I am based in London and if you want to see someone there I can point you in the direction of a colleague I refer to who specialises in this. Hope this helps.
Thank you for joining. An interesting and informed post.I am a cardiologist - and though I don't personally do the procedure to close PFOs, I provide the imaging/scans for them.
The jury is still out on the best treatment for stroke and PFO. The problem is that PFO is very common - perhaps 1 in 4 of us have one - and in the vast majority of people it never causes a problem. However, given your age it is far more likely that your stroke was related to the PFO (whereas if you were in your 70s other causes would be more likely, even with your PFO).
Even if the PFO is the cause of your stroke and it is technically possible to close it, there is a spectrum of opinion on whether it is best. When I was training I thought closing PFOs was going to become the default but the trials just haven't panned out this way. These trials take a group of people with a stroke and give them one of 2 treatments - (1) close their PFO or (2) thin the blood with tablets. The trials haven't generally shown that patients getting (1) do better than those getting (2). Clearly (1) has some small risks from the procedure, and it probably slightly increases the risk of some rhythm problems in the future. However, choosing (2) means taking tablets long-term to thin the blood - not usually a problem unless you have bleeding, but some patients prefer a procedure to reduce long-term tablets.
A point less commonly covered is that, even with a PFO, the risk of another stroke if you are taking medications to thin the blood appears to be low - perhaps ~1% at 4 years (i.e. 99 in 100 people in your situation wouldn't have another stroke on just meds at 4 years) and maybe ~1.5% at 8 years. This in no way belittles what must have been a terrifying event - its just that the data struggles to show that you would be better off with a closure procedure rather than taking pills.
In practical terms I would suggest (this is absolutely no substitute for medical advice - disclaimer etc...)
- making sure that you definitely had a stroke rather than anything else (I know this sounds patronising but it can be very unclear - i.e. confirmatory scans at the time and clear documentation this was what your doctors thought at the time)
- making sure that there is no other cause for your stroke (usually done with blood tests and perhaps rhythm monitoring) though at your age the PFO is more likely to be the cause
- making sure the PFO you have from the bubble study is indeed a PFO and suitable for the procedure (that the hole can be closed with a keyhole device from the top of the leg and there is no unusual anatomy that would make it difficult) - done with an ultrasound scan from inside the gullet under sedation
- discussing with your cardiologist whether they think the procedure offers benefit over just thinning the blood - a tricky question - but I expect patients to ask me and I have this kind of discussion with them
- ensuring that if you are going to have it done, you have it done in a unit that does lots of them by somebody who does lots of them
To reiterate this isn't advice - but I think both options (procedure or pills) are reasonable options - the difference between them, based on the trials, is likely to be small. I don't know who offers PFO closure in Birmingham but it is a great unit with an excellent reputation. I am based in London and if you want to see someone there I can point you in the direction of a colleague I refer to who specialises in this. Hope this helps.
Thank you for taking the time to post that, all very good information.
Indeed, the Stoke was confirmed, i spent several days in hospital and had a couple of MRI and MRA scans.
https://www.pistonheads.com/gassing/topic.asp?h=0&...
I have started back in the gym over the last few days as the doctor said it wouldn’t hurt to lose some timber.
All been well i am seeing the consultant next week to discuss the options.
It is quite strange watching them pump the 2 syringes into you each time they did it.
Indeed, the Stoke was confirmed, i spent several days in hospital and had a couple of MRI and MRA scans.
https://www.pistonheads.com/gassing/topic.asp?h=0&...
I have started back in the gym over the last few days as the doctor said it wouldn’t hurt to lose some timber.
All been well i am seeing the consultant next week to discuss the options.
It is quite strange watching them pump the 2 syringes into you each time they did it.
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