British Heart Foundation
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ICD lump appeared!

Tonight I noticed my ICD (11months old) has developed a lump at the top right corner as if it is being pushed further forward there! It's always been quite prominent especially along the upper part of it. I have it on my right side it was my choice as I'm a lefty and my right arm is restricted by arthritis so thought I might as well have it that side as I would never be able to raise that arm anyway! But apart from a nasty wound infection 6 weeks after surgery which is actually the exact spot this lump has appeared I have eventually got used to having a " mobile phone" lying under but extremely close to my skins surface! It's defiantly not infected but it did feel awkward this evening but it sometimes does as if it's moved slightly out of place but I've never had this rather alarming protrusion. I'm hoping it will have settled when I wake in the morning and it won't have ruptured through the skin! I'll phone the ICD clinic in the morning but it's an hour and a halfs drive to the hospital and parkings a nightmare, there's no point going to my GP as he admits he knows nothing about ICDs and says go to the specialists. Just wondered if any one out there has had an ICD misbehave in this way?

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My device does have a bit that protrudes more at the top, a lumpy sort of bit, though I can't say it changes over time, seems fairly constant. There is a fair amount of movement though, I can wobble the device about and make it stick out, depending on the angle my shoulder is at. It's probably not anything to worry about, but I think you are right to phone the ICD clinic and ask their advice. Let us know what they say and good luck!

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Thanks for getting back to me, the "lump" did go down in the night but the ICD does feel and look awkward. The ICD nurse eventually phoned me back this evening - she's the only point of contact for ICD patients and sooo hard to get hold of ( I live in Northern Ireland). She's emailing my EP about it and thinks I should go up to the hospital in Belfast tomorrow and wait about and see if he can pop out between surgeries to take a look at it! Hopefully he can reassure me, if I even get to see him. It'll be a long day, an hour and a half drive and parking is a nightmare and maybe waiting around all day and in the hope of seeing him - will be taking a packed lunch and my kindle! Really hope I don't need it reimplanted with all that entails like infection ect! I should have had my 6 monthly review in October but his clinic is running 8 months + behind and he had told me at my six week appointment after the operation he would review its position as it was sitting too proud and he didn't like the look of it! Maybe I'm fussing about nothing but it's taken me a long time to get used to it and apart from being uncomfortable sometimes I've managed to get on with my life so it would be a blow to have to go through another op.

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How did you get on today? Hope there wasn't quite as much much waiting around as you were expecting x

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Hi Laura, I've been told to go up to see my EP at 1.30tomorrow before his clinic starts at 2 so hopefully he'll be able to reassure me my ICD won't decide to rupture through my skin and also he won't have to re site it! Still hoping the snow stays away long enough to get up there and back safely!

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Hi Laura, havmt really got the hang of replying I think I've just posted my reply to myself! Can you read it ok!

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Yes, I can see your reply :)

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Hi Laura, thought I'd give you a quick update from my last post. Saw my EP on Wednesday and he reassured me that although my ICD was sitting out quite prominently it was in no danger of bursting through the skin and the lump would have been caused by it shifting a bit and it had obviously resolved itself, and I shouldn't be afraid to toggle it back into position should it happen again as it was quit safe to do this as the wires had lots of give in them! At least he wasn't concerned and has put my mind at rest. I'm afraid Laura I'm going to ramble on here but I need to get pen to paper as it can be very cathartic and forgive me for burdening you with having to read it but it does help to share my worries! Unfortunately after giving me a quick check over my ectopics are back with a vengeance which I was aware of, I'd had a second ablation for these 15 months ago which was semi successful but resulted in needing an ICD last March. Alarmingly he said he really didn't like performing this on me as it was a tricky operation, but will wait and see after I've had a holter and echo. I was glad to have got this appointment with him as I hadn't been feeling great and knew things weren't right with my heart and know my heart failure is worsening again. I know my heart symptoms so well now after being diagnosed 17 years ago with severe dilated cardiomyopathy and heart failure and then atrial fibrillation 20 months ago, I knew my heart was misbehaving again but my care and treatment has been a long and difficult journey and I've had to push and fight at times to get seen. My six monthly checkup for my ICD should have been in September/October last year but there's an 8+ month delay which I found out when I phoned up in December as I wasn't feeling great heart wise! Although I had gone up to the ICD clinic in November to have my ICD levels adjusted by the technician because I'd had a couple of VTs ( one I didn't know about) and the other I'd felt very faint at home and had sent them a reading via the magic box that sits by my bed and was told that was what happened but my heart had rectified it before the ICD had kicked in. My EP had been sent the results and told the clinic to bring me in and lower the levels at which my ICD will perform. Unfortunately I wasnt seen by my EP/cardiologist at the time regarding this and it's only " the lump" that has brought me properly face to face - apart from a rushed farce of an appointment 3 weeks ago where he sent me to the technician to see that my ICD was working properly but had no time to examine me or listen to me tell him about my worsening symptoms! I'm just grateful this lump appeared and I got this last appointment squeezed in before his weekly surgery where he had time to listen to and examine me properly. Anyway so much to my quick reply to you about the lump, I'm afraid I've just unburdened myself to you as I don't have any point of contact like a heart failure nurse anymore sorry about this but you seem to be a great listener from any of your posts that I've read. At least I know my ICD is working away and looking after me and I can safely move it if it shifted position! Hope all is well with you and the big freeze didn't affect you too much?

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Like you say, lucky that the lump (harmless though it is) has got you seen sooner so that your worsening symptoms can be addressed. Hopefully things start happening a bit more quickly for you now. You should probably write a separate post about what's happening re your AF etc, so that others see it. I don't have any experience of that side of your experience but I know others around here do. When are you getting your halter etc and how soon should you get some results from that? Good luck with it all and feel free to vent in my direction any time! X

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Thanks for your reply Laura, not sure when I'll be getting the holter ect I just have to wait on the letters arriving on my doorstep summoning me to go get them done! My Doc said he'd see me in three months time so am hopefully having them done by then otherwise no point seeing him, but I know the holters are like gold dust, very hard to get one and the waiting list for echos is ridiculous so unless I can bypass the lengthy waiting list I'm a bit dubious. Hoping my doc can fast track me. Not sure how exactly I post on this forum about my problems for others to see, do I just type it in chat under a heading for others to read and hopefully get some replies? Can't remember if that's what I did with my ICD lump problem and you were kind enough to reply? And also many thanks for your feel free to vent to you offer it's much appreciated.

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I have an ICD fitted in left shoulder. (July 2017) I have always felt the cables. About four weeks age I felt enlarged bumps. Being alarmed, on advice of my Pacemaker Clinic I asked a GP to examine me. (Bumps have now gone down) He was not alarmed but as a precaution has ordered a scan (Booked for Thurs. 1st March) I will advise the result in due course ? My Dr's advice is not too take any chances! Have it checked out properly !

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Thanks, I'm seeing my EP tomorrow, he's fitting me in before his clinic. As you say always best to get it checked out.

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