Has anyone had this procedure? I have PAF discovered following bleed from AVM in brain. (AVM too small & deep to remove so just getting on with life). Due to bleed cannot have anticoags. Cardio very keen for me to have LAA occ. but I am not sure if risks (there seem to be some high ones) outweigh benefits. Also gather that the device when implanted is likely to leak which may mean anticoags anyway...certainly aspirin ig given after op. Cardio has performed 60 procedures but bit coy to reveal ongoing complications.. Any comments gratefully received. Thanks.
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Sailalong
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In America Medicare have now approved it as a treatment so it will be widely used.
Did he not say that you have to be on anti coags prior to and for months after the procedure until it is fully closed? Was this at Brighton as it is one of the ten centres doing trials.
There is also a procedure using keyhole surgery where a hot loop is used to remove the appendage. That would seem to be a better option.
Thanks for your comment seasider. This would be done at Leicester. No, no one mentioned coags although my online research suggests that you are right. If this is true I might as well refuse the op and just try for anticoags. My neurologist says I have 5% chance of another bleed reducing annually to 2% Apparently all persons with AVMs have that risk..
I had a reply today from the makers saying that I am a suitable person to be considered for the Amplatzer Amulet Observational Trial and my details have been forwarded to Brighton.
For a start do not 'do' ' coy' if you are putting your life in this mans hands. Get your questions well organised and take someone with you to get a better analysis of what you are in for.Were any of the 60 procedures like yours...similar sorts of complications. Is this an electrocardiologist advising?
Hi gingercats. Thanks for your reply. I now will make a long list of queries. I am paticularly worried that messing with the heart may send me into permanent AF - PLUS causing me to become symptomatic which I am mercifully free of at present.
You will have a much better idea when you have spoken to the electrophysiologist...if thats what he is again.You will get an idea of his competence as he answer your questions Some of these people seem deliberately 'dithery' and want to appear 'clever' because then you, as the patient, have nothing significant to hang onto. and that suits them......If you feel confident with the surgeon....I find it is almost instinct .........anyway you will compare notes with your companion.....yours will no doubt be in your head as you will only be able to talk and listen and prob. not be able to note take.....Yoiu cannot know absolutely what will be but a good surgeon will try to make sure you are comfortable and understand as much as possible.
Hello again. The person I have the appt with is not an EP but the cardiologist. Hope he gives me enough time for.all my questions. I will certainly check if he has had afib sufferers among his previous patients. I would hate to end up in a worse state. The op has a 5-8% risk of serious complications including damage to the heart blood vessels among other things. All very worrying really
5-8% sounds high to me....I am not a doctor.Try to get a better idea on this.....via this site or on line.I do think you need to know more exactly....not good English.sorry.....how many of these complex jobs he had...like yours. Take with you,if possible, someone with a good brain...and good ears.
Have you accessed the American hospital sites such as The John Hopkins and The Mayo Clinic?Also, it occured to me the stated risk rate needs to be up to date....some of these leaflets are way out of date.Some of these surgical procedural options are racing forward at the speed of light.It is all a lot of work when you are worried and prob.not at your best but I have found that dig,dig,dig is the only way to get any meaningful info.
Thank you. Followed your good advice and amongst other came across Cardiac Rhythm News and article by dr dhiraj gupta on latest advances. Very reassuring re improvements and successes. Thanks so much for your advice. The thought of the op on my heart is very scary...
Due to brain haemorrhages I also couldn't take aspirin and normal meds and so my EP put me on Dabigatran which I still take. As far as I know this is used by people who have had knee replacements. I take 110mg twice a day. After blood tests it seems to be doing its job.
Hi davee. May not have got my last reply as lost signal! Was saying how useful to hear of your bleed but still being on dabigatran. Think I will try for that especially as there in now an approved reversal agent (Praxbind) which is effective only minutes after being administered. Must be good news for all dabigatran takers. Will talk to my neurologist. Gosh. So good get help Thanks.
As far as I understand it, yes it is safer than Warfarin(coumadin) for intercranial bleeds. I think Eliquis (apixaban) even more so BUT and big but it has no antidote yet tho much work being done on that. The reversal agent for the dabigatran is a huge step forward.
Intersted that you may think of the amplatzer. Will let you know which device they are thinking of for me after my appt at end of the month.
I had spoken to London Bridge hospital about the Watchman device last year and also asked local hospital of options there. They have done the earlier Amplatzer version and said it might be possible for me on the NHS. Can never have too many irons in the fire.
My GP said if he needed a NOAC he would opt for Apixaban due to its short life.
My procedure is NHS funded. Brighton and sussex is one of the hosp. ok for nhs so worth getting yr gp or neurologist to refer you if not done so already. I thought London bridge was private. I had considered going privately but seem to be being carried on by the wave by leicester. My feet havent touched. The ground since the TOE.
Forget the lack of a reversal agent. It is so very much a red herring. Look at past posts. If you are bleeding that badly and you are not on any Anticoagulation it is a problem and they have ways of stopping bleeding.
Quite true PeterWh. The bleed from my avm was massive but Addenbrookes were brilliant at getting things done. My prob is that need acoags for afib but that idea is met with big no-no from all concerned with avm.
I can only say that it must be. With the subdural I had 2013 I was taken off aspirin and put on clopidogrel. Then with my first very fast AF put on Dabigatran and been on it since.
Please see our fact sheet on this procedure for information.
Thank you Rachel. I have visited your site before. I am finding it difficult if not impossible to find details of post procedure results. Once you are thro the op they count it a success- we need more info on how things are with people like us 1 ,2,3 years on. After all, it doesnt fix the afib...also if there is a residual leak around the device what stroke risk is there then..all questions I will ask next week as suggested by 10 gingercats.
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