Hi - I'm going into hospital next Tuesday to have an implantable loop recorder placed in my chest. Apparently there are two sizes- I'm hoping for the smaller one if course but apparently it's up to the doctor in the day. Has anyone any experience of these? Im having it done to get a definitive answer as to whether I gave AF or not.
REVEAL device: Hi - I'm going into... - Atrial Fibrillati...
REVEAL device
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Gilldy
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Hi Gilldy, I've got a reveal device implanted - it's not the injected tiny one, but the one that's more like a memory stick size. I don't know why they didn't do the injectable one - and rather irritatingly, my cardiologist sounded surprised that I hadn't, when he saw me for my 6 month review!! (He was the consultant in charge of the procedure, too!)
But it was, and is, absolutely fine - and only 6 weeks after being implanted, it 'revealed' an episode of AF. So job done and done well! After many frustrating attempts to capture the arrhythmia that only appeared hours after handing back an event recorder (we all know how often THAT happens, don't we?!) it has been bliss to lose the stress and gain certainty.
Though of course now I've discovered this wonderful forum, I realise there are fantastic hand held devices like Alivecor I could have been using but no medic had mentioned...
How are you feeling about it? If you have any specific questions, do ask 
I'm very glad I had it put in and it's reassuring to know it's there. Gook luck
Thanks - good to know someone else has one although sorry you needed it.. I've had most of my questions answered by the nurse at the hospital but still some more! such as can you feel it? Can you see it?
I'm naturally hoping it shows I haven't got AF but of course I need to know either way as I'll have to go on warfarin if I've got AF. How long will you keep it in for or will it come out now they've found AF?
Yes there's always more questions! I had millions that I couldn't find anyone to answer! Sounds like you've got a helpful nurse/unit/ hospital which is a massive bonus. Where are you having it done?
So... Can you feel it? Or see it? Well my understanding is that it depends on where it's put and which device you have. (The tiny one that's injected in is less likely to be seen/felt.) So my experience may be very different from yours.
Mine certainly felt sore then tender for several weeks, but that was from the 'pocket' they cut to insert it into. I also found that using my left arm hurt (which was normal apparently, depending on where it's placed). But everyone is different. And after about a month I didn't even notice it was there at all. I have a friend who's a guy who had a reveal like mine put in, and his could be seen like a little lump under the skin near his collarbone, cos he's thin. Im female and well endowed (that's a kind way of putting it!) and for some reason they put mine lower in my boob. So mine is 'buried' and isn't at all visible and I have to prod very hard even to 'find' it. There's a small scar but it healed very quickly and 6 months on it's fading nicely. My understanding is that the injected one is a tiny insertion scar only.
Personally if I could go back, I'd ask (before I went in the operating room) exactly where they are inserting it - and of course their reasons for choosing whichever one they choose. I wouldn't change what they did- but I'd just like to know beforehand
I understand that they do remove the reveal pretty quickly after some diagnoses (my friend only had his in for 3 months). But they said they'd keep mine in as long as the battery lasts (I think around 3 years) because it helps them see the frequency and type of the AF, and how it starts and stops etc. They also picked up some lower chamber arrhythmia that affects what meds I can have & that they will keep an eye on.
I really hope yours gives you peace of mind - and that you get the great news that you don't have AF. Or anything worrying! Xx
Thanks - I didn't get all the information at once from the nurse and had to ring the hospital to get some important facts ironed out. I didn't realise it would make my arm hurt - thanks for telling me it will stop me worrying that I'm having a heart attack!
Hi Jane - second reple - more questions!
I'm having it done at Calderdale hospital. I was only thinking about AF but after your response wonder what else it can show. I had a stroke last year and there's some doubt about the cause- they wondered if because my heart is a bit 'floppy ' at the bottom it might be causing clots to form.
Also - hopefully last question- can you be allergic to it?
Hey gilldy, my understanding is that it can show up anything electrical that's going on. So it wouldn't pick up (for instance) angina - but anything to do with the heart beating and how things 'fire' it can pick up. It's very useful for knowing if things that don't feel arrhythmia -related are (for instance I had some events that they think now must be neurological because nothing rhythm related shows up on the recordings at those times.) Also useful for identifying those weird sensations that feel like arrhythmia. There are some sensations I was sure was a quivery heartbeat- turns out it wasn't. Must be something like digestion/vagal nerve - which is v reassuring! Conversely things I didn't even think were a problem were things needing treatment. Which I'm glad to have found out. Like Carole says, I feel very grateful to have it.
Oh yes- i was concerned about if you can be allergic to the implant too- because I have lots of allergies and my skin is intolerant to metal.
My cardiologist looked into it for me and said because it's made of titanium it's very non allergenic - and because it's inside, it's not going to be the same as if it was on my skin. I couldn't have my implant sitting on my chest without it making me sore and itchy but it's been absolutely fine inside.
He also said to me that though there's a miniscule fraction of a chance of the body 'rejecting' it, the worst that would happen is it would go red and sore and they'd take it out again. Nothing dangerous. Hope that helps! X
Thanks for that info about your tenderness etc. I had my device implanted two weeks ago and because what I call my 'events' are so random, I was sceptical about anything coming of it that would validate my stories to physicians. Today I was at my GP for an ultrasound when I had an event in the waiting room. I got out my patient monitor and pressed the button but then felt as though I was passing out, so didn't hold it over my implant because I had to call for help. Best place to have a cardiac incident! ECG just showed tachycardia but my BP was through the roof. I ended up in the local ED by ambulance, by which time everything had settled. Have either of you had this happen and how can I make sure my cardiologist sees whatever it was?
Sorry to hear you had this awful event - I supposed that good part is that the doctor will be able to see your heart tracing from the time and see what was happening. I hope you are feeling better now - very frightening at the time though. I haven't had those symptoms myself thankfully so can't be of much help.
Anything unusual is frightening - I'm lucky to be in a town with a hospital, and grateful that the medical staff responded so quickly and professionally. I'm also glad that it all settled down, because I really didn't feel like a trip with the Flying Doctor! Technology has changed our lives so positively.
Hi Gilldy
I have an implanted reveal device - the larger one of the two - since May 2016. Jane Finn has already commented quite extensively but maybe the following will be helpful.
The procedure didn't take long at all and was very straightforward and pain - free. The incision was very small and the scar is barely noticeable. I am quite unaware that the device is there unless someone gives me a real 'bear hug'. I have had absolutely no pain, nor other problems, either immediately following the device's insertion or since.
It's positioned on the left hand side of my chest towards the centre and near the top of my breast. I guess if one wore a very low cut dress you might just about be able to see the very faint scar - but someone would really need to be 'up close and personal' for that!
The intention is that my device will remain in place for approx 3 years (when the battery runs out I think). To date one incidence of AF has been detected - like you the intention was to see whether a tentative diagnosis of AF could be confirmed. So - yes. I have paroxysmal AF and I now take an anticoagulant (apixaban).
Anything else ??? .... ah yes. If you are a passenger in a car straight after the insertion it might be an idea to take something to pad the seat belt on the way home so that the seat belt strap doesn't press too hard on the 'wound'. I went home on the bus and felt absolutely fine!
My only problem (initially) related to the base unit at home which transmits data from the device each night. Mobile reception is not good in my bedroom and the transmission of data wasn't reliable so I now have the base unit against an outside wall in the living room (I live in a flat) and that works OK.
You'll be called back by the 'techies' after about 6 weeks to check that all is working properly, but make sure that you are given the written instructions regarding the operation of the base unit and the hand-held 'dongle-type-thing' you use to capture an AF 'event' if you, knowingly, experience one. I wasn't given these initially though I had been given verbal instructions which I understood at the time. A phone call sorted that out quickly and they were posted to me.
If I can help with any questions do just shout. Personally I consider myself very lucky indeed to have been given one and it gives me real peace of mind.
Carole
Thanks Carole - all the extra information is helpful! Glad you didn't have any pain afterwards- hopefully I'll be the same. I'll try to get the written instructions for the unit too- I'll definitely forget otherwise!
Great comments and tips! I'd forgotten the seatbelt thing! I hope you have Carole's version of the implant, Gilldy- it sounds more cutting edge than mine
Also no soreness/ tenderness is great to hear - maybe I'm just a wuss!! Actually I've just remembered that at my checkup they said the left chest/arm pain was cos a nerve had been temporarily affected - I had a trainee guy doing the procedure who was very nervous, bless him! Someone even had to take over in the end- so Gilldy, I think you should listen to Carole and ignore my post-procedure pain as a freak occurrence! x
Hello Gildy,
I have the smaller recording implant, put in 6th January this year. I too asked this question on the forum before I had it done and CaroleF was so helpful and reassuring . My scar looks like a faint pink mark and it's very slightly raised. The only time I'm aware it's there is if I pull a sweater off with both arms above my head and feel a slight pricking sensation. Nothing was detected when I went for first check up on 14th Feb which was reassuring as I hadn't had any episodes. I had one the very next night though and I'm due to send the results through automatically next Tuesday. It'll be interesting to see how that works but saves having to travel 70 miles round trip to hospital for a 5 minute consultation. The only problem I have is remembering to have the 'hand held dongle type thing' with me all the time. They did suggest at the hospital having it on a lanyard round my neck but didn't fancy that.
One other thing, I'm on warfarin and when I went the first time to have the implant I was advised not to have it done as my INR was too high at 3.2. I'd had it checked 3 days before at the surgery and it was within range. I don't know whether you're on warfarin but something to watch out for.
Thanks VeeT - I didn't realise you'd have to carry the dongle like thing around although now you've said it does make sense. I'm not on warfarin yet and hoping to avoid it - we'll have to see what this device shows up.
Seeing your other replies is very interesting! And I think my implant must be more antiquated (even though it was only put in in Sept 16) as I don't have a base unit or download thing - I have to activate mine by a clicker and then go into hospital for it to be downloaded. Maybe it's a hospital funds thing!
Interesting 4-way conversation going on here! I had previously been unaware that not all reveal devices were the same and had certainly not previously heard of a tiny inject-able one.
Just for clarification, the device in my chest is a Medtronic Reveal LINQ and is the one about the size of a small flat cigarette lighter (so I was told; I didn't see it). The 'base unit' is a MyCareLink Patient Monitor. The 'dongle-type-thingy' is properly called an Activator (or Patient Assistant).
Like VeeT I wouldn't want to be wearing the Activator round my neck, but then I'm not symptomatic. I keep mine in a small zipped coin-purse together with it's instruction card and that lives in a zipped pocket in my handbag. I generally use the same handbag day-to-day so it's not a problem remembering to take it with me.
JaneFinn mentioned the possibility of cost-restraints affecting the type of device given. I asked how much my amazing bit of kit cost and was told £1,500. I am *so* grateful to have been given it.
hi my husband had one fitted after 4 years of being told there was nothing wrong with him within 4 weeks of having it fitted they knew what was wrong with him and pacemaker was fitted well worth it because life is worth living again good luck x
Hi Gilldy, was it today you we're having your reveal implant put in? Been thinking of you! How are you doing? X
Thanks for remembering! I was considering letting people know how I'd gone on but wasn't sure anyone would be interested.
There was nothing to worry about at all. The operation was amazingly fast. I asked the consultant for the smaller device which he was happy to do. I didn't need any sedation just local anaesthetic and i was finished by 9 am this morning. I'm feeling a bit groggy now though! It's a bit achey. Thanks for adking!
Gill 😊
That's fabulous, Gilldy! Sounds like it went amazingly well! I was in my gown in the 'ward' first thing but not taken in for the procedure til 4.30 pm ... then I was in the theatre for 50 minutes so it was a looong day for anxiety to build! Like you I had just local anaesthetic though and could get home straight away, which was great.
Now you can relax knowing whatever goes on with your heart rhythm, it won't be missed. Such a relief! Hope the pain subsides soon- and remember not to lie on your left side!!
Xx
Hi Jane - I couldn't believe how fast they worked- I had the best consultant too who had time to talk to me first- I asked all the questions suggested in this forum!! I was booked in at 7.15! so really no worse than the dentist. Thanks for all the information before I went in - this forum is so helpful and caring.
I was also wondering how things had gone for you, Gill. It sounds as if all went smoothly and according to plan. I'm sorry to see (in a later message) that you were experiencing some pain after the insertion and hope that has subsided now.
Here's hoping the device will now provide data that enables your consultant to see the best way forward for you.
Carole
Thankyou! It's not really sore at all now . I've changed the dressing and it looks worse than it feels! I'm hoping it shows nothing but i'll have to wait and see. Would certainly tell anyone else having one that it's less painful than going to the dentist!
It sounds as if I may have been luckier than you Gill 'cos I didn't experience any pain at all after the insertion and the wound didn't look at all scary at any point. I struggle to see where it is now - nearly a year down the line. Hopefully yours will heal really well; the Bio Oil tip was a good one.
I have a pacemaker which I know is different. Following my open heart surgery and months later a so called friend remarked well that's you cleavage ruined! My reply was they are my life lines. It is noticeable but it has improved my quality of life so cleavage ruined lump near collarbone all part of my life's rich tapestry
Gilldy in reply to
Hi - yes I had it put in this morning- and my cleavage isn't looking too good either! Mine's down between my breasts and currently hurts like hell if i so much as look at! But as you say- small price to pay!
Back to my Reveal device! I'm going on holiday next week and know I'm ok to fly but do I need to take the unit that looks s bit like a care phone with me?
If you mean the base unit that transmits data every night then I think that depends on (i) where you are going (ii) how long you'll be away and (iii) whether you generally experience quite frequent episodes of AF which you would really want to be transmitted on the day that an event occurs. Whenever I have been away from home it's only ever been for a few days at a time and I haven't taken the base unit with me as I know that once I get back home all the data from the reveal device in my chest will then be transmitted.
Have a feeling this is not a whole lot of help to you, so if in doubt I'd phone the hospital looking after to you to ask one of their technicians. It occurs to me that various factors may well influence what the answer is in your particular case.
By the way - are you aware that you can't go through the normal security 'scanning' at the airport? When it's your turn to go through tell them about your reveal device and they'll take you to one side for a manual 'pat-down'.
Thankyou- I'll give the hospital a call today- I don't have any symptoms so maybe they'll be happy for me to leave it at home- I hope! 😊
I'd be interested to hear what they say, Gilldy I guess the whole point of having a Reveal device if you are asymptomatic is that it shows up 'events' that you personally were unaware of, so if you are away for sometime they may wish you to take the base unit with you?
Hi yes that seems possible- i wonder if the information would just store up on the implant until i get back and then transfer then. I'll ask them and report back!
Yes. It does 'store up'. As I mentioned before, I think, I don't take my base unit away with me when I'm away for a few days and as far as I can tell all the data is transferred once I am back home. The transfer seems to take quite a while though. The hospital technicians have never queried about that and to be honest I have never asked.
I rang the device team at the hospital and they said I don't need to take it!
Hi Gilldy - it looks as though we're both Gills. I don't see my cardiologist for six months unless there's a special reason. I'm in rural Western Australia, and about two nights a week I stay at another house. I've been taking my base unit with me each time but maybe I don't need to after all from what I'm reading here. How did you go with updating after being away?
Why not check with the cardiology technicians to see if you really need to take the base unit with you when you're away from home for a couple of nights if you're not sure about doing that. ....... but I never take mine with me if I'm away for a few days and all the data gets uploaded once I 'get back to base'. It seems to take a while to do that, but then mobile reception isn't great where I live and data upload often seems to take quite a long time anyway.
I will, thanks Carole. There's no phone connection at the other house, so no wireless internet and I'm dreading my mobile phone bill with those big uploads.
Hi - as far as I know I will only be told if the machine picks up any arrhythmia so everything seems to be ok at the moment. Apparently I've got to keep it in for at least a year to be sure I haven't got AF. I'll be glad to get it out as its difficult to sleep comfortable without it pressing on the side of my boob and feeling like it's going to pop out!
Thanks! I think mine is very near the surface so often feels like it's working it's way out. Still a fantastic piece of kit though - I know I'm lucky to have it!
I can feel mine: it's also visible. I only ever had a cleavage when breastfeeding so there's not a lot of tissue to hide it 😁
GillianBeth (sorry I don't seem to be able to tag you at the moment so hope you see this) ... don't forget that you also have the little hand-held Patient Assist device. You can use that to 'capture' an event if anything happens when you are away from home and then, when you get back, hold it to the base unit to upload that captured data.
[I can appreciate that you are concerned that you might 'miss' sending vital info about a significant event that will lead to/confirm a diagnosis.]
Thanks Carole. After the episode Two days ago, I'm not going anywhere without that device!
Hi guys and gals just had my reveal monitor placed under my left breast sorry i call them breasts even though im a male lol and ive had it in 3 days before i posted this i judt wanted to know how did you deal with the pain i carnt even pick my daughter up it hurts tht much how can i deal with it and how long will it go on for. P.s. its the smaller reveal monitor ive had put in.
Hi - sorry you're experiencing pain - if it continues I should ring the hospital as no one on this forum seems to have suffered at all. Maybe it just needs a few days to settle down. Mine is in my fourth rib space theoretically but actually is largely floating about i n the bottom of my left breast. Still have to be careful sleeping and have to lie on my r hand side.
I'd be interested to hear if anyone has had the device taken out yet and how it went.
Thanks for the quick reply i have figured out tht it hurts because my dressing over the wound has a lot of dried blood on it ive carefully removed it and changed it for a new dressing and its a lot more comfyier now its just sore were they made the cut btw is there anyway i can post pics so i can show other people wht it looks like
Hi I'm starting to feel pain.i had mine done few days ago
Hi I had the implant last week.was uncomfortable and I get the odd twinch.sometimes I can't sleep in same position and if I overdo things I get slight pain in it
Hi - it's 18 months since I had mine putting in. Usually I can't feel it at all but I still can't sleep on my left hand side or my front. If I roll over by accident I'm sore all the following day. However I've felt safer with it in - all strange palpitations can be checked out and I know I definitely haven't got AF. Good luck- if it doesn't get better and calm down give the hospital a call - I did a few days in ad I thought it was going to fall out / needless to say I was wrong!
Hi yes I've got review in two weeks so I'll mention it.i too can't sleep on my left side or my front.keep worrying it will move.i got a rectangular mark on my chest.i had my MRI scan today so see how that goes.good luck with you
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