Why on earth would anyone who belongs to this forum, which is committed to helping people with AF, complain about the post below, which originally included a link to a video by Professor Richard Schilling. He is rated by his peers as one of the best heart rhythm surgeons in Britain and was addressing The Royal College of Surgeons at University College London about the management of AF.
For the past 4 years, it has been virtually impossible for anyone to see a GP, let alone have a face to face appointment with a specialist. I’ve no idea how many people are diagnosed annually with AF here in the UK and in other countries around the world but I do know that at the moment, many have had little choice but to seek help from forums like ours and what do you do, ask for the video to be deleted.
That's how everyone feels if a link or post they agree with is removed FJ. Now you know what it's like!
Live and let live, I say. We all have different opinions, lets hear what everyone has to say and not stifle others just because we don't agree with what they write. You never know one day what they have said, or sent us the link to may be proven right.
I don’t understand the point you are making Jean. It’s got nothing to do with anything some has said or not said it’s about depriving people from information from a trusted and respected source but thank you for your reply.
You agreed with that link in the post. Sometimes we members agree with posts/links that others haven't liked and someone gets them removed. I say free speech/opinions to all and if someone doesn't like a post then move on and ignore it. The only thing we shouldn't tolerate on this forum is rude remarks or arguments.
So I posted a "trusted and respected source" about cranial bleeding some months ago and had my entire thread removed by admin because someone(s) reported the thread as they thought it was scaring people, when all I was doing was presenting an evidence based study into the discussion so members would have more rounded information to make a decision with their doctors. So like Jean says, maybe you should think twice about reporting posts you don't agree with, because it works both ways.
As to this particular post re Professor Shilling's, who I respect to the point that spoke to his office about his availability for my ablation -- I do remember that the video was posted twice but for technical reasons the link did not work. So before we go into conspiracy theories, it may be something as simple as the poster or admin removed a link that didn't work. I really have no idea.
I’m sure Jean will correct me if I’m wrong, but I think she was referring to a post from someone we thought lived in the States but turned she lived in Belgium. It was at a time when there were very real signs that there multiple registrations at play designed to disrupt the forum. It’s disappointing that you have tried associate me with problems connected with your posts. The only time I can remember was once when you were close suggesting taking anticoagulants as a PiP and Admin intervened.
Regardless of all that, it’s interesting to hear you say that this intervention was nothing to do with you……
ps the post you referred to with two duff copies was still there yesterday
I can't understand why Prof Schilling should be deemed so controversial as to be cancelled, FJ. I didn't see the link before it was removed but it seems there is a minority of people who feel that if they do not specifically agree with something (anything), it should be banned, burnt, removed or made illegal.
One comfort to me is that those who bury their heads in the sand leave a large part of their anatomy sticking up in the air - and vulnerable to a kick. 🙂
Unfortunately this is a common penalty of using something that has its origins in the digital age. You and I and others (who I won't mention but you know who they are) have experienced on many many occasions the handiwork of Trolls over the years that we have been associated with this forum and its forerunner on Yahoo. Trolls manifest themselves in all sorts of ways, shapes etc. etc. so I can only conclude the subject matter you refer to is the handiwork of a Troll.
Unfortunately for peeps like Admins they make it very difficult for them to be dealt with.
That is strange as the post is still there? Was there previously a link to the video? There shouldn’t be a problem with it as it wasn’t an advert for a particular provider.
I wonder if it was someone who objected to the other things that you said in the post, reported it, but then the moderator just removed the link instead.
There does seem to be a bit of contention over anticoagulants, but I’m quite glad I just went down a rabbit-hole and found something about increased risks following discontinuation. I had thought that was just reverting to the ‘normal’ risk. Just crossing fingers that I don’t need to have any breaks from apixaban. My sister had a fall, and really got confused, having had warfarin for years. Anyway, her INR rocketed and the hospital put her on Apixaban, which she never seemed to trust.
Following another fall, they found a micro-bleed on the brain. Personally I reckon that could have been due to the sky-high INR a few months earlier. Anyway I asked her on the phone what she had to do about anticoagulants and she said ‘oh, I have to stop those’. I still wish I had asked further, but this was before my diagnosis and I was pretty clueless about it all.
Anyway, the upshot was a massive stroke a couple of weeks later, from which she never recovered. It has given me a heightened awareness of my need to keep taking the anticoagulants, but I hadn’t been aware that she could have been at an even greater risk at that point.
There do seem to be massive gaps in the care of older people who live alone, despite relatives trying to help at a distance. I can’t help but wonder whether she was taking her medication regularly, or even managing to open the packs properly. I’ve ended up feeling both guilty, and determined to ensure that I’m doing all I can for my health - but hopefully knowing if I get to a stage where I really need some extra help. My brother and I were just trying to set something up when she had the second stroke, but it had taken a few weeks for her to agree.
What a sad story, Gumbie Cat. We need to acknowledge the fact that not taking a medication carries a risk, and there’s a difference between making a decision based on one’s individual risk profile and falling into wishful thinking. Watching a YouTube video isn’t going to change your individual background risk regardless of how much you “like”what the person is saying. That’s the risk of rabbit holes, and I get that we’re all vulnerable to these influences. Even when someone is telling us what we want to hear, we still need to be critical of not only the information presented but also our own lens. We also need to question ourselves. I’m also approaching a decision time about ACs and I’m waiting for a referral to the anticoagulation clinic. I’m going to be more inclined to listen to what the people treating me say rather than what someone on a video says. There are a lot of sad stories on this forum unfortunately. How is your sister now?
Sadly she did not recover and passed away a few weeks later. She wasn’t found for a few hours , after we couldn’t manage to phone her. Though had she survived, she would have hated being in a nursing home.
That’s so sad. I’m sorry for your loss, even if perhaps it was a blessing given how catastrophically awful these things can be. When my mum needed full time care at the end of her life, I always used to say that old age can be a curse as well as a blessing. Even though you know the suffering is over, they’re still not here with us.
It can indeed be a blessing in the end. Trouble with being the ‘baby of the family’ by 10 years, is seeing one’s possible future! The sister who lived close to her was diagnosed with a brain tumour at the same time as we were dealing with this fall/moving to a manageable flat etc. It was during the 2021 lockdown, so it was difficult - staying in hotels with no restaurants open etc.
She only lived a few months longer than the other sister. They both had strokes about 12 and 14 years previously, were then found to have AFib and went on warfarin. I felt lucky when I was finally diagnosed really - without having a stroke first. Probably no coincidence that it happened after that stressful year.
Happily I am now back to chivying the 5 year old grandchildren into swimming lessons, and getting to see the school nativity play.
That’s a lot to deal with in a short space of time, and still relatively recently too. I’m glad that at least you can enjoy being a grandmother and enjoying the special moments.
G.Cat: I just went down a rabbit-hole and found something about increased risks following discontinuation. I had thought that was just reverting to the ‘normal’ risk.
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May I ask what rabbit hole/source? From everything I've read, if you discontinue anticoagulants, your risk is identical to what it would be not taking anticoagulants. In other words, there is no "rebound" risk which you seem to suggest, unless I am reading it wrong.
It’s what I had thought too. After looking at the link Flapjack mentioned, I noticed his post one month ago about ‘Black Box warnings’ in the US on anticoagulants. I thought it just meant that your heightened risk would return on ceasing the drugs.
Someone shared the following link, which suggests some rebound effect of increased likelihood when they are stopped suddenly. I must say that it is quite a small cohort.
Thanks! The 2016 study you cite is consistent with what my current ep told me, but is inconsistent with three other ep's said. I"m sure all these ep's would be familiar with the study posted, but apparently have different interpretations. And as far as I know, no follow-ups with larger cohorts, nor have I read anywhere that thinner "rebound" is being used for clinical decisions.
The large multi-institutional REACT-AF trial in the US on PIP anti-coagulation, hopefully will answer this question as well as the core question -- that being whether strokes are related to afib frequency, or if afib is simply a marker for stroke risk, independent of afib frequency and burden. I have seen data and commentary both ways.
As to the Black Warning, you are correct. Just means if you stop thinners, you risk will return to as before, i.e no rebound effect. This may not however be the case going on and off Warafin (Coumadin), where some studies do suggest a rebound.
I was just about to respond to your last reply but I see it’s disappeared. Nothing to do with me although I could understand why you or someone else might have deleted it. No point in pursuing the discussion is there, if anybody is interested, I think we should just leave it to them to draw their own conclusions about what happened……..
The post remains and I have added a link. I was very politely asked by admin to remove the link because they had not received a request for approval to post it. There was no mention of anything else regarding the post.
So it was me who deleted the post at the request of Admin.
There are rules about posts promoting commercial interests and advertising, I believe. I don’t know if that applies in this case. Agree that some very dodgy links stay up indefinitely. From what I’ve seen here, most of the deleted posts tend to be those with a high “squabble” factor and some people start threads to do that deliberately, but not so much recently. They’re usually about nothing anyway, just people squabbling about nonsense. What was all that about cayenne pepper a while back? I honestly couldn’t work it out at all!
This may be the relevant paragraph from Forum rules Autumn -
Advertising/soliciting/self-promotion
Your purpose in joining or posting should not be to promote, advertise, or otherwise call attention to your or another website, blog, product, or business. This includes ALL external links to reports/videos/websites without prior permission from the Admin Team.
It didn't occur to me that a link to one of the most eminent UK EP's would need prior clearance.
As I understand it, if someone makes admin aware that a link has been added to a post without prior permission, admin has no option but to enforce the rule and ask the poster to remove it. The reality is that responsible members would not report any link unless they had concerns about the content and nobody in their right mind could possibly have taken exception to this one. This is why this is so concerning…….
I didn’t see the link but it did cross my mind that it might have breached posting guidelines if it was linked to a private practice and could possibly be interpreted as promoting it. That’s the only thing I can think of.
I think I found the video online, it was about 2 minutes long. I thought it was very nuanced. It wasn’t saying anything ‘out there’, assuming I watched the video you were referring to.
No Autumn, it’s a formal 25 minute long video. Go to YouTube and search Professor Richard Schilling and select At the limits - Leading Medical Attention.
Also read my reply to Finvola. What’s done is done, I think it was done in spite. Tell you what, I’ll message you a link 😉
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