Ablation/S-ICD Recovery Time - why is it taking so long?

[AspiringVet]

Bit of a long one… Hi all, I’m currently recovering from a 4 week hospital stay and struggling with the recovery period. I was admitted for investigation due to a high burden of PVCs which were making me very symptomatic. I had a previous diagnosis of low burden of PVCs, as well as mild dilated cardiomyopathy and mild mitral valve prolapse. I was taking a low dose of bisoprolol and Ramipril, which worked well for a few years. There’s also a history of sudden cardiac death in my family, so everybody was being cautious! To be honest, my experience in the hospital was a bit of a nightmare - it was a constant battle to be seen and have anything done. Eventually, I was discharged after an ablation and having a subcutaneous ICD fitted. They switched me to nebivolol and kept the Ramipril. There was very little improvement over the next four weeks, so they added some dapagliflozin to help the heart muscle and try to reduce symptoms. I’ve had a little improvement but definitely not there yet, 6 weeks after discharge. I had planned to return to Uni and sit exams but have now decided to suspend as I’m just not feeling well enough. Am I crazy to think this recovery is taking ages?! I’m young and fit other than this. Was I naive in thinking I could be back to near-normal this quickly after all of the above? How long did other people’s recovery take?

[I-a-n-]

Hey. Surprised to see you've not had any replies to your post. I had atrial flutter which was corrected with ablation 2years ago. Recovery time for me was probably the best part of 8 months. This was how long it took for things to settle down - I'd been having episodes of ectopic beats lasting 3 to 7 days at a time, every couple of weeks. These episodes gradually became less frequent and taking bisoprolol as and when helped calm them down. 2 years in I'm still fine, active, get the odd runs of ectopics now and then but just live with it as a minor irritation. Best wishes.

[AspiringVet in reply to I-a-n-]

Hey Ian, thanks for getting back to me! It’s comforting to hear about your experience. I think when you’re young and something like this happens it’s easy to assume recovery will be quicker than “everyone else”. I thought the ablation would be a fix all and that I’d be back up and running at 100% straight away. I’m slowly coming round to the idea that I need to take life a bit slower for a while, as rubbish and disappointing as it can feel! Appreciate the time you took to respond and glad to hear life is back to normal for you now

[MrHocum]

Hi,

I'm afraid I can't help with your question as I'm only due to have my S-ICD fitted next week, but I was wondering whether you think it is the S-ICD implantation or the ablation that is causing your long recovery time? Do you have any thoughts generally on the S-ICD?

Thanks a lot.

[AspiringVet in reply to MrHocum]

Hi, best of luck with your S-ICD implant! I think there are a few confounding factors for me - hopefully your situation is a bit more straightforward. Firstly, the ablation didn’t 100% solve my arrhythmia, so I was left with a lot of symptoms afterwards which they’re attempting to control with medication. Secondly, I had really significant pain after my S-ICD implant which was managed really poorly by the hospital. They warned me that there would be more pain associated with the S-ICD than there would be with the TV-ICD. I wasn’t prepared for the level of pain I had afterwards to be honest with you. It was at 8 or 9 out of 10 shortly after surgery. The extreme pain lasted for about 2 - 3 days after surgery but did slowly reduce after. I didn’t ever really get an explanation as to why I experienced as much pain as I did but I would emphasise that I don’t think my experience of the procedure was typical, even for the S-ICD. I really feel it was a failure of the hospital to listen to and act on what I was telling them. It’s a lot harder to get on top of pain after it’s already set in. I ended up going home with oxycodone and diclofenac for pain relief. As a result of the pain I actually couldn’t get out of bed for the first 36 hours after surgery and I stayed in hospital for 5 days after the implant, when the expectation was that I would go home the following day. I think all of this totally ate away at my physical strength and mental resolve and after a 4 week hospital stay I was really shook up and had to recover with absolutely nothing left in the tank. I really want to emphasise that I don’t think this is a typical course for S-ICD patients and that 2 months on I’m feeling a lot better and I’m glad to have the ICD in. The recovery I’m doing now is definitely related to my heart and not my ICD. I don’t say any of this to scaremonger but want to be honest about my experience because I think knowing this was a possibility beforehand would have helped me be mentally prepared. I also struggled to find anyone online who had a similar experience to me. My perception going in was that the pain would be significant but that the hospital would use medication to control that pain so that I wouldn’t have to experience ALL of it. As I said, my case was complex and it’s been a really challenging couple of months but I am moving in the right direction now. I wouldn’t change my choice to have the S-ICD put in… but I absolutely would change the hospital I had it done in!!! Best of luck - I know this is long but hopefully it gives some decent and honest insight 😊

[AspiringVet in reply to MrHocum]

With regard to my thoughts on the S-ICD - I haven’t been shocked so can’t comment on it in that sense. But to give a general overview on just having it in my life: it’s bigger than I expected it to be - I’m average sized woman and you can see the outline of it on my side/back near my shoulder blade. I had a couple of weeks where I couldn’t lie on my left side at all and then after a while I could lie on it for a couple of minutes. Now, I can fall asleep on my left side. I can feel it when I lie down or sit back into some chairs and have to adjust but that’s not terrible. The scar where the box went in is about 5 inches and the one at the bottom of my sternum is about an inch and a half - they’re both healing well. I was very nervous about future replacements after all my surgical pain but my consultant said that procedure is much more straightforward. They only replace the box and not the wires and since the pocket will already exist it should be much less painful. I’m 25 so will have to have several changes over the years and I think ultimately, having the S-ICD will make this easier than if I had the TV-ICD. Overall, I’d say having to get any type of ICD is pretty rubbish but at the end of the day both will do the job if the time comes and it’s certainly better to have one than not if you are at risk of cardiac arrest! There is definitely a psychological component to having a device that can deliver a shock and it really puts you in the cold face of having to consider your own mortality, so there’s no harm in relying on your support network and/or going for some counselling to work through the whole thing!

[MrHocum]

Thanks very much for the really detailed reply, it is much appreciated. It really does sound like you got the thin end of everything all at once. I think you are right to say that the amount of pain you had for the first three days was probably quite unusual but it is also good to be fully prepared that it can go like this - it sounds as if I will just have to wait and see and hope I am one of the luckier ones. The fact that they say almost all of their patients go home the same day suggests that I should try and remain optimistic.

Out of interest, where was the pain? Was it from the box location or where they put the wires?

It's very good to know you have gradually adjusted OK and can even sleep on your left hand side now. I turned down an ICD for the first five years after my diagnosis because I did not want to think of something beneath my skin and it there was no S-ICD option I still would not be having the traditional ICD fitted. The pics of it and how big it looks under the skin can look very different and it does worry me that I will not be able to get used to it, maybe more psychologically than physically.

Do you worry at all about the wires moving if you lift your arm above your head or turn around quickly? I guess this is what I will worry about most when I start trying to swing a golf club again.

Again, thanks very much for taking the time to reply.

[AspiringVet in reply to MrHocum]

No problem at all - I did a lot of reading online before mine so I’m happy to be able to contribute now. I agree - I would try to focus on the positives as much as possible. The expectation is that you will go home the next day and not need any crazy pain meds. It’s definitely good to know about the alternative outcomes but not to expect that it will go that way for you, if possible.

It was very much “surgical” pain, if that makes sense. I could feel incisions as soon as I came round - a burning/tearing pain. Initially it was mostly the larger site around the box but the smaller incision at the bottom of the sternum came in after a few hours. The skin over the actual box was numb - sensation is slowly coming back now. I found the area where the wires travel over the sternum a bit sensitive/bruised/itchy for the first few weeks. I had trouble moving my left arm also - I think this was down to pain and the muscle adjusting to having something under it! That improved bit by bit each day.

I have full range of motion with the arm now. I think the worry about moving wires comes more with the TV-ICD. I think once they get those first couple of weeks to settle without too much movement, they feel nicely locked in place. I am aware of the box and a bit of discomfort/pulling sensation when I reach overhead still but again this sort of thing is changing all the time and my feeling is that will go completely. So to answer your golf question - I think once you give yourself enough time to heal properly you’ll be good to go again!

I felt similar about having something of that size put in. I’ve seen other people with the TV-ICD and you can see the wires on their chest and the box can move a good bit, which I find quite freaky! I’ve found that because my box is under the muscle it’s quite tightly packed in there and doesn’t move around at all, which helps with not giving me the heebie jeebies 😂 it’s not a lovely sensation to feel it when I sit/lie down but it doesn’t make me squirm either!

Hope this all helps 😊

[MrHocum in reply to AspiringVet]

It does very much. You can read all the literature but nothing beats real experiences.

I hope you manage to get on top of whatever is causing your issues after the ablation as it sounds like you’re now sorted with the s-icd after that really unpleasant start. Good luck when you back to university.

[Ernest76]

Sorry to read of these problems with one so young!Ablation is the gold standard but your heart will be a great sensitive muscle for some time

Lifestyle should be dominated by three cardinal aspirations.

1.

Absolutely no alcohol or other stimulants!

2.

No Caffeine! Use decaffeinated tea/coffee which is produced using the pure water method.

3.

Use meditation to clear your mind of stressful thoughts.

Hope you feel better soon