Boston Scientific IV/ICD lead problem - any experience to share please.

[Chinkoflight]

Hi, I had a Boston Scientific 2 lead intra venous ICD fitted 4 weeks ago.Background

From discharge home the first night going to bed and lying on my back I experienced substantial shocks which were impacting my diaphragm. The following day I was experiencing runs of small pulsing , up to 10 beats at a time. I was also experiencing severe postural hypotension. The device is fitted primarily as a secondary protection against a potentially fatal left ventricular tachycardia. The primary protection is provided by bisoprolol.The atrial lead was set to pace at 60bpm to counter my natural low HR circa 40bpm resting from dropping to unsafe levels at night. This lead is failing by not shocking correctly although I understand it is sensing correctly. There was not a lot of confidence however when it came to explaining the interactions that were giving me the symptoms. The offending lead was adjusted to pace at 35bpm effectively switching it off and all the symptoms disappeared!

Questions

Does anyone have any experience of being re opened up to check the device lead fixing points?

Does anyone have any experience of having a lead replaced?

Does this experience include removing or leaving the offending lead in situ?

We're you given any explanation or analysis of the cause of the failure?

Was it fully successful and no further problems?

Was there any evidential excess battery usage recorded that would ultimately shorten device life?

Are there circumstances where the entire device and leads were replaced?

And the not so good question has anyone experienced ongoing issues or bad experiences associated with incorrect shocking further damaging the heart and causing more disrupted nerve pathways? How was this discovered and resolved?

Has anyone subsequently had a different device fitted eg sub cutaneous ICD?

I hope this set of questions is not too specific.

I have a date coming up where I feel I will only have a limited time to reflect 'how we got here' to being immediately prepped for theatre for the consultant to examine and mark their own homework. I doubt much time will be allocated to any introspection or explanation given my existing experience.

[Lezzers]

Hi, cricky that's a lot to have gone through! My husband has an ICD and has been shocked twice, one after the other, not only is that extremely painful but it messes with your MH! I personally don't have any experience of what you've gone/going through but I do know of people whose device leads &/or their device have failed. I do believe they leave the redundant lead in situ, as it's embedded into your heart it can be complicated to remove, though it has been done before. The device itself is relatively easy to remove/replace.

If you do Facebook at all, there is an excellent ICD support group that may be able to help with your questions, it's a really friendly helpful group & I'm sure you'll get some input from others who've had the same or similar situations. Good luck

facebook.com/groups/7879967...

[Chinkoflight in reply to Lezzers]

Thank you. I'll follow the link.

[MikeThePike]

Sounds like the team who fitted the device lacked experience or were incompetent. Kindly tell us which hospital performed the operation so the rest of us can avoid going there. Thanks.

[PinkKizzie]

'morning Chinkoflight, a year past November I went into hospital to have a three lead pacemaker implant, however this didn't quite go to plan. The third lead didn't go where it was supposed to go and it pierced my heart. The implant was stopped, and emergency OHS was performed to repair the hole. I found the experience very traumatic and for the time being I can't go through another implant attempt. I'm on great meds for my EF of 25%, and I try to keep active. Best wishes, take care. PK.

[Chinkoflight in reply to PinkKizzie]

Hi PinkKizzie, I'm so sorry to hear that and that you came out at the wrong side of the probability statistics. I have similar concerns about the probability of an 'outlyer' result as my journey so far has seemed to hit the unlikely too often! ( I also sense some victim blaming too). I have read that lead replacement and removal should only be undertaken where emergency operating facilities are available and clearly even though it's an awful outcome that side of care happened for you. OHS is not done in my general hospital routinely so it concerns me. It's clearly not a theoretical risk! Thank you for sharing such an experience. For every lead failure there are probably 180 or so people with no issues. When you are at the wrong end of the data it can be a lonely place to be that even fellow successful travellers find it hard to understand. What seems a challenge for me is the Drs and their teams are the most anxious to move on and not reflect on any learning experiences. That makes me anxious. I have read a paper produced for the device manufacturers on lead failure and there is no regulated process for this. So the data is suspect and likely very underreported. The Drs mark their own homework. In normal times I suspect there is more introspection but in the UK healthcare systems right now I suspect ' move on' is a phrase used a lot.

[PinkKizzie in reply to Chinkoflight]

Thank you for your reply, you have gone through a lot too. As far as I'm aware there is 1% chance of an implant failure, it's never happened before in the hospital I was in. Not sure who got the biggest fright me or the consultant! Anyway, I feel really well and keep myself busy. Have a good day, keep well.

[EmmJayTea]

Crumbs! I'm sorry you have had a bumpy ride so far. Have you delved into the World Pacemaker forums? There is an ICD section, which you can find here: pacemakerclub.com/messages/...

There is a lot of interesting and helpful information here from people all over the world and this often comes up trumps if I'm perplexed about something, including strange pains or twitches. As with all of these things, you do need to weed out a bit of quackery, but most of the posts are helpful and you may well find someone there that has experience of a lead replacement.

My leads seem to be functioning well and I have only been partially reopened to reseat the sutures holding the wires against the venous entry point and this didn't involved moving or touching anything inisde my heart.

I did have some initial pacing twitches around my sternum, but these disappeared after the pacing team adjusted the ventricular pacing voltage (it was a bit high, hence other muscles in my chest were twitching!).

Battery life isn't significantly affected by pacing pulses, even anti-tachy pacing (ATP), as the energy required is very low. However, charging to deliver a shock (irrespective of whether the shock is actually delivered) WILL shorten the battery life. How much will depend on the capacity of the battery and the energy of the programmed shock. When mine last charged to shock (as a standby during ATP), it appeared to shave off around 3-4 months of the remaining battery life. I have nothing else to compare this to - I'm just reporting my own data following a recent device interrogation.

With regards to your question about an S-ICD, I don't think this is currently an option as they are only single-lead devices. Those of us that have dual- or triple-chamber ICDs are limited to the transvenous versions.

I hope you get sorted! In the meantime, I'm sending you lots of positive thoughts and well wishes. Keep us posted on your journey and any further answers that you discover. Take care.

[Chinkoflight in reply to EmmJayTea]

Hi EmmJayTea, thanks for your really helpful reply, especially the experience of ATP pacing. There is no doubt some of what I am experiencing is of the ATP sort, it's just so unexpected as before the LVT event the only thing monitored, as reported to me, was a single paroxysmal AFib event some 8 months previous which I had been unaware of. Here's a strange example. I was on a train for the first time yesterday, seated back to direction of travel. As the train accelerated I was getting pacing twitches!!I think most of my anxiety , I'm not normally anxious, has been from a lack of communication. It leaves you thinking there's something they're not telling you, especially as whatever has failed has been from the get go. I'm sure it will be resolved but in an ideal world I would be able to seek a second opinion. I think this is why I'm reaching out for some experience so that I can focus better and use any limited time I have in the next face to face to get quality and meaningful information. But as some say, not all doctors are comfortable with being questioned. Yes, it can be the way one asks!!!

Anyhow, thank you again.

[EmmJayTea in reply to Chinkoflight]

Very wise to do some research ahead of your next appointment.

My experience with asking questions is that it is all about how you ask them. First and foremost, I want to work with my medical team to help manage my condition and give myself the best chances as I grow older (I'm 47 with congenital disease). So I go out of my way to make sure they know this. My questions are to help me, but also to help them. We are a team.

As to the twitches, it may well be a voltage issue and you can ask this. It may not be resolvable if your own personal threshold requires a higher voltage (it is heart-specific, so what works for one person may not work for the next).

I know from multiple conversations, both on and off forums, with other patients, that if you don't have an ICD or a pacemaker, then you will never really know how it feels. Some of the occasional stabbing pains and twitches can so easily be brushed aside by those who never experience them. That doesn't make them any less real or invalid.

Don't underestimate that there is a lot to get your head around when you have an implant fitted. Anxiety over shocks and even day-to-day pacing is perfectly normal and quite common. You are not alone in this respect and I hope this little reminder helps reassure you a bit on your journey. 🙂

[Chinkoflight in reply to EmmJayTea]

You've clearly been there! Wise words, thanks.

[golfeur]

Copy from a previous text posted yesterday

I had an ICD implanted 3 years ago, Boston Scientific too, few months after a lead showed a noise on the readings because it was doing its job I decided with Dr. to wait a bit. I year ago I had multiple feelings at night with each heart beats not exactly chocks I told my wife I must had been dreaming but she did not take it she called the clinic and we had to go the same day. They tried to remove the faulty lead but it was stuck too well in there, so they decided to put another one, my heart was a garbage drum by now. When it was time to remove the dressing the wound was wide open. Another trip to the hospitals and a new ICD the third one , the same thing happened, it opened again. Then I had to go to a hospital that could do the removal of the leads and the ICD everything, because I developpe infection. It was a tough time. Now, free of appliance only a huge hole to close. I went for a check up at my cardi clinic, to talk about the rest of my life and after many tests it was discovered that my FE was up to 58% from 35 many years ago. According the Drs I do not need an ICD or Pace. Good news but could it be possible? Can I sleep on my 2 ears?

[Chinkoflight in reply to golfeur]

Hi golfeur, the thread of this story is that interventions don't always go to plan. So I'm 10+ months on from this original post. The lead revision for me has worked well so far in that I'm still here! But I'm finding there is a legacy that lingers on and your post is a sanguine reminder. What for me is missing in the last year is just one, yes just one, face to face or even a telephone call , checking out " my living with...." experience over the last year as I'm 2 days away from the event that kicked all this off. It feels like the pressures on Drs to record successful outcomes and the potential cultural pressure to deny 'never events' pushes the less successful patient outcomes to the margins, in to the too difficult box. When in my extended hospitalisation last year, I asked a Dr where their curiosity had gone. A tad impertinent, but I have curiosity from my scientific training. No time/resource for that, diagnosis is speculative without a lot of investigation, so symptoms, treatment, discharge. I guess experience is important part of that process and risk assessment. If we haven't got to the bottom of it you'll be back. I thought, hopefully....

Whatever, I think about all this a lot and occasionally chivvy myself with it could be worse.

[golfeur in reply to Chinkoflight]

If we haven't got to the bottom of it you'll be back. I thought, hopefully...

It is in my mind too. But for now, I feel better than before so I ask myself, what can be worst? At 82 and I just pulled from a year of hell with these procedures, My confidence is laking with the companies who sell these appliances. The worst could be having a heart attack, going into heart failure? I tend to have confidence in my casrdiologists, yes I have 2 one is an electrophysiologist and the other the cardiologist that follows me. And, my wife always says that I have a good attitude about all that, my glass is always 1/2 full as hers is 1/2 empty, she is the one who worries the most.

I am sorry to be so late to reply to your post but I just came here lately and do not know how to navigate this site but will learn,

[Chinkoflight in reply to golfeur]

Absolutely right and I tend most of the time to be optimistic and trusting. At the end of the day all the Drs can do at the outset is treat the symptoms when you're on a trolley in emergency, and in my case they did everything right and with brilliant care twice.I think it's great that you found this and are researching. It's a way of finding good information for the less researched questions. It helps you know whether you have outlier or uncommon concerns or are part of the herd with say statin issues.

ICD's are quite lumpy compared to the more common pacemakers, and mine doesn't let me forget it's there, especially sleeping at night. I tried hard to have the non vascular invasive type fitted but that was a more costly and time intensive procedure so the electrophysiologist wouldn't agree with the cardiologist. Of course, when it went wrong on day one you can imagine what I was and still do think. I do dislike the idea of the two leads that move around poking through a major vein and going in to my heart. It is a sort of miracle, just wished it wasn't me!

I'm 72 and hope I have a few years left. I had adopted a great and enjoyable exercise regime including Parkruns but this January as the first anniversary approaches I have backed off my program. Hopefully I feel more confident as the lighter evenings pick up.

Take care and thanks for reading my stuff and taking the time to reply.