IV-ICD lead failure update.

[Chinkoflight]

IV-ICD intravenous implanted cardioverter defibrillator , in my case two lead with a pacing functionLead failure - a generic term used to describe any sort of lead related problem, broken, loose, cracked etc

HTFAGE *

Hi this is another missive from me. Hopefully there are some grains of usefulness. I have previously sought advice and received great support for my ICD implant problems. Background: implanted 12/3/24 , started causing debilitating problems from first evening, support calls to hospital team were negative, get used to it, and finally a call back from the hospital 2 weeks later to say the device was failing, as if I didn't know, and the pacing lead was temporarily effectively switched off the same morning.

The outcome yesterday was a "lead revision" procedure. In addition to the information from the pacing technician wireless based device monitoring,a second set of X rays were used to look at lead position to compare with the X ray images taken just after the device implant.

This showed the pacing and sensing thinner lead position in the right atrium was detached and 'floating' around. This meant it was subject to change as my posture changed and was the cause of the erroneous charging/pacing activity I had experienced.

So much better this time round, I was talked through the procedure, the options, risks etc and was 'allowed' to ask questions. In truth the options are limited, the main decision being around whether to try and reposition the lead, leave the failing lead in situ which is viewed a low risk solution or to remove it first and replace with a new lead. The relative risks were not given, the consultant wanted all options available, but he was pre-occupied with the considerably increased infection risk in this procedure, 8x the risk!

I had read up about lead revision and there are worrying risks in some literature around lead removal, suggesting this should only be done in larger heart centres that had OHS facility. Indeed a previous responder kindly shared their troublesome experience of a problem removing a lead. This was in the back of my mind.

I asked a question about this and was advised, 1 there were unspecified reasons why removal was likely a good idea, 2 as the leads were only recently implanted it would be easy to remove, 3 it meant the existing Venous hole could be used for the replacement.

I had already made my mind up, in spite of some concerns about this centre and having reviewed options with my GP around second opinion and centre change, that I should accept all the risks, and to 'give myself over' to the Consultant. I wanted to be able to manage my anxiety in the run up to the day and on the day. To help I actually wrote a review of all the issues I had had with the hospital team, all the unanswered questions. Quite a lengthy piece. This worked in that by writing it down I knew it was always going to be too difficult to address given the pressure NHS services are under which no doubt contributed to my issues and care. Should my care outcomes badly fail on this second attempt my family will have a very good paper to put to an inquest!

The lead revision felt more brutal overall than the initial implant.

For cosmetic and I suspect access reasons, the consultant proposed to make a longer cut encircling the scar to remove it and leave me with just one scar on completion. Infection was a big concern from the outset, and as he talked me through removal of the device to access the leads, he said he would make space to insert a special anti infection pocket for the device to sit in. He removed the old lead before inserting a new lead. Replacing the device in 'the pocket' was a very physical affair and in spite of a lot of local anaesthetic, still painful. This was because the combined bulk, removal of the scar requiring pulling together of the wound made for a tight fit.

Thereafter the remainder of the procedure, recovery, pacing checks, x ray was fairly standard to discharge.

However, for those following my journey, you may remember much of my anxiety was around the need for a pacing function associated with my SR Bradycardia, bisoprolol impact, and whether all I needed was protection against a fatal LVT.

I had lived for the past four weeks without the pacing lead working and the rationale for it to me seemed lost, especially pacing at 60bpm at rest.

So I was surprised when the consultant said the new lead would be set at 35bpm , meaning it was effectively switched off, when he had initially persuaded me why it was essential to have the pacing function device.

Although I still believe I would have been better served by having an s-ICD , as was an early plan by a consultant, the fact that my heart is being allowed to function for the most part in its natural flawed state 99.99r (!) % of the time is okay. Here's hoping the infection control has been managed.

I hope this is a helpful and not too lengthy read, I never could do precis. (Sorry)

I still believe, more work needs to be done regarding outcomes for use of non- heart invasive devices for combatting LVT. My guess is the issue of time and facility for implanting s-ICDs for example is an economic cost. But I note that a centre I am very familiar with has just started the first implants of leadless pacing devices for Bradycardia ((Medtronic) via the femoral artery in England! Avoiding invasive trans-venous leads is the way to go, but may be some way off before this is the norm.

Oh not forgetting

* Hard To Find A Good Electrician 😬. ( All my jokes are inevitably in bad taste I'm told)

Apparently there are some good thunderstorms around later today to observe from a cage! Are there any research papers on the risk of being outside in a storm with an ICD or Pacemaker! ?

#chinkoflight

[Golf1985]

can ask what your symptoms were,I have a temporary pacing lead left on my heart from surgery but it was done abroad so have no contact here,my hosptial isn’t surgical so waiting for referral to try get it out but I can’t prove it’s the wire.can’t be seen on X-ray as to small and have nothing to compare it to were it should be,it’s a real nitemare I’m living at the moment,so many symptoms and no answers

[Chinkoflight in reply to Golf1985]

Hi Golf1985, I'm sorry to hear that. You're right, the nightmare is having symptoms and not knowing cause and effect. I do know in reading up about ICD lead removal sometimes small fragments can be left in but didn't read what that meant for future care issues. It's maybe worth posing as your own post because someone may have an answer, or hopefully someone will see it here.My concern was, were the symptoms I was experiencing, a manifestation of some associated sudden worsening of my condition, arrhythmia, scarring, causing the problems coincidental with the implant? And effectively I was told, it's you, not the implant. That was so unhelpful and a constant part of my journey was that practitioners have so little patient episode/contact time they default to the standard diagnosis. For example it was easiest to assume that the cause of my LVT was an ischaemic related history as would be true for 90% of patients and not to investigate the cause but treat the problem.

From having no awareness of my heart beating at all in day to day life, including the near fatal left ventricle Tachycardia I was suddenly very aware of my heart. The low voltage pacing function which worked most of the time at 60bpm I didn't feel but presumably when it moved around and then started 'confusing' and conflicting with my natural rhythms went into noticeable hiher voltage pacing correction taps and occasional thumps.

But as well as these short obvious physical interruptions I had a general unwellness feeling, definite lowering of energy, and the oddest extreme postural hypotension. This latter symptom remains unexplained although it was undoubtedly caused by the device since it stopped as soon as it started, IE with the switching on and then off of the device.

It has also left me with a level of let's say fed up ness, I'm not sure whether I can use the depression word, but I did find myself thinking occasionally I can't live like this. I am normally mentally quite tough.

I don't think my physical symptoms can be the same as your experience in that the lead was always powered, not isolated.

The evidence about redundant leads deliberately left in place is that outcomes remain the same.

I'm sure there must be a case for removal.

Your GP can refer you to any centre in the country, not just your local hospital. But you will be in the elective process and subject to waiting lists.

The only way to circumvent this is to go privately (probably prohibitive for a procedure but not necessarily for advice). You can look up the surgeon lists at all the leading hospitals. They indicate their specialisms and their private and NHS contact details.

The other way to circumvent this is to present at the emergency department when your symptoms are at their worst, but unless they assess urgent treatment you will be discharged to a waiting list. But you should see a cardiologist in the process.

I'm not sure I've been that helpful except to perhaps post your own specific questions re in situ redundant leads.

[Golf1985 in reply to Chinkoflight]

Thankyou for the reply,yeah it’s very helpful but also insitefull,yeah I’ve seen a surgeon privately last month and he has referred me to his hospital which I actually worked before being off sick last July the letter had come through today after some gentle persuasion on the phone😂,got appointment in June but that hospital doesn’t have a a&e so that doesn’t help,but been to another one with surgeons and they wouldn’t take me in so annoying,my symptoms are like a reaction,got pericarditis I can’t get rid of also ears ringing constantly and vision off and sinus shut and also my gut is inflammed ect but crp is always normal,even with peri so something is irritating it,and if I lie on my rite side since day one after surgery my heart doesn’t like it,I get pain and heart rate increase so maybe the wire is tight as it was pulled tight to try get it out,but as my vitals ok they won’t do anything,the surgeons wants a pet scan then go from there,was hoping after 13 years of fighting and finally getting diagnosis it was over but doesn’t seem that way,can’t work or lead normal life

[Chinkoflight in reply to Golf1985]

A cardio PETscan is the way to go, it will also look to eliminate other serious conditions like Sarcoidosis. If you can get that done at a good centre, I was sent to Oxford, then your cardiologist will have the best available information. A paper I read suggested that a practitioner centre is more effective in terms of outcomes if they do more than 30 lead revisions/removals a year. (ICD data)

[Golf1985]

yeah the surgeon suggested a pet scan think it’s the only scan I haven’t had done,yeah they are a Uk main heart centre but I dint realise so many leads were taken out as my surgeon says they don’t but i reality they do as we know

[Sweetgabby]

Hi I’m so pleased you’re feeling good I had a duel chamber fitted in 2021 a year later the pacing wires was coming through my skin instead of removing it they just put new wires in in and put it in a pocket a few months ago my device got an infection and was coming through skin they had to remove everything gave me a temporary one to clear all infections and I was fitted with cardioverter defibrillator if they removed the pacemaker when wires came through my skin I wouldn’t have got infection they said it’s coman to get infection after a year they said it brews when they fix the problem and not remove it I was in hospital for 6 weeks if they told me when they fixed the problem I would have demanded a removal and got a new one there

[Chinkoflight]

Hi Sweetgabby, that must have all been very scary. The whole process of device fitting is a speedy process, and it seems to get into the mentality of the staff, everything has to be done quickly. And they are under pressure to fit more and more devices. So stopping to reflect and consider is a low priority. I have e no evidence but in my centre it just feels like that. I hope it feels sorted now. I'm one week in and I'm not aware of any activity from the box and I feel completely normal. Taking time to listen to patients is important - shouldn't need to say that. Thanks for sharing your experience.