Difficult Surgery

I had my ICD fitted yesterday and it was an incredibly traumatic experience. 

I was supposed to have dual chamber ICD fitted by due to complications they could only get one lead in.

Basically, whenever they tried to place the lead in certain positions I started to feel my throat close up, like I couldn't breathe and started getting dizzy. The only way I could describe it is slow suffocation.

The first time it happened I tried to wait as long as possible before saying anything as, obviously, I expected some discomfort and pain. It often felt like someone was standing on my chest throughout the surgery. But then it progressed and it felt like a foot was slowly pressing down on my throat, reducing my oxygen supply. I waited for the feeling to ease, but it didn't and the room started spinning, so I struggled to get out what words I could.

With the knowledge that a lung puncture was possible, this was obviously my first thought, but they said it wasn't that.

They paused, the surgeon stopped and it felt like a weight was lifted. But when he went back in, the same thing would happen. He tried a dozen or so more times, each time waiting to see if the feeling started again. It often did until he was able to find one lead placement position where it didn't.

The surgeon said something about "hitting the third wall" and he thinks that was what was causing my body to react like that. 

That was only the first lead, when he tried to do the second lead it happened again, and so often that he aborted that lead altogether. He said his only other option would be to puncture to get it into a different position and he didn't want to do that.

Surgery lasted nearly 2.5 hrs and he admitted, it was a difficult case

Emotionally and physically it was a lot and definitely more than I bargained for. However, I am still having slight tightness in my throat/chest when I take deep breaths.

I had an x-ray and echo before discharge to check the leads and for any fluid and they gave the all clear. But given it was apparent most people in the operating room didn't have a clue what was going on during the surgery, except the surgeon who said he's seen this happen before, albeit rare, I am worried the recovery/discharge team have missed something.

They have said if I get breathing difficulties, the pain doesn't subside with painkillers after a few days or if I have trouble eating to come back, but I feel really anxious about the days ahead.

Everyone who I have spoken to who has had an ICD says they have never heard of this happening during surgery and I can't find anything online.

Has anyone heard of / experienced similar? 

11 Comments

sorry you had so many problems

by new to pace.... - 2023-11-23 10:17:05

I would say if you still do not feel right go to your emergency care or whatever it is called where you live.

new to pace

Were you given any "conscious sedation" or pain relief?

by Gemita - 2023-11-23 11:52:38

Apart from disbelief at what you had to go through, I am finding myself wondering whether your medical team actually administered any anaesthesia or local pain relief? 

When you have recovered, I would make a formal complaint to the hospital you attended (I see you are in the UK), explaining what you felt and asking for a full explanation of what went wrong and why you experienced such extreme pain and suffering for a relatively minor procedure?   Furthermore, I would perhaps be looking for another cardiac team to take over my care since trust has clearly broken down.

I see that you have Arrhythmogenic Cardiomyopathy and have received a positive genetic test for Desmoplakin Variant.  See link below which should be copied into your main browser to open.  There is a Factsheet to download in case it is of help.

https://www.cardiomyopathy.org/about-cardiomyopathy/types-cardiomyopathy/arrhythmogenic-cardiomyopathy

I see you were due to have a dual chamber TV-ICD although you clearly mention that the second lead was eventually aborted?   Since your condition needs specialist care I am not entirely clear whether the device you eventually received will be adequate for your requirements, which is why I would seek another opinion or go back to your implant team for a better explanation.  I would ask what exactly occurred and what needs to be done in the future to put this right?

I don’t suppose there are too many members who have heard of, or experienced anything similar?  You have been extremely unlucky and I am so sorry this has all been such a nightmare for you.  As new to pace suggests, please attend A&E should you experience worsening symptoms.  I hope for the very best

What you need to know

by Good Dog - 2023-11-23 17:46:36

New to Pace and Gemita gave you some excellent advice.  Quite simply; you should not be scratching your head wondering "what happened" and "what is next". Someone needs to sit you down and explain in laymens terms "exactly" what happened and what the plan is going forward. 

You need to speak with your doctor or the powers that be at the hospital where all of this  occurred. You need to explain what you felt just exactly as you did here in your post. If necessary; you must demand (in no uncertain terms) that they provide you with a clear understanding of what happened and where you go from here. You are entitled to that and it is the very least that they can do. It is not unusual for procedures to not go as planned or for unanticipated complications to occur. It can happen. However, you need to have a comfort level after the procedure that eliminates unecessary worry and/or fear going forward. You need to be your strongest advocate for good and proper care. Good communication between you and your doc is essential. If he cannot do that, then you need to fire him and get a new doc.

I am confident that you can turn all of this around and gain a much better understanding and comfort level going forward if you pursue it as I suggested. 

I wish you nothing, but the very best. Please keep us posted on your progress!

Sincerely,

Dave

Links from Andrew

by ANDREW75 - 2023-11-24 21:36:50

 

Wishing you well, I am in the USA, so hope the links work. I have read your story. What you have is so rare it does not appear in the search button here, so you are the first! I get the impression also the Surgon and his team were new to this also.

I am from UK originally and understand the incredible difficulties the NHS is going through. As others have said you need to become very politely-pushy. Good luck

GOOGLE SEARCH- Many Links

Arrhythmogenic Cardiomyopathy - Google Search

Ryans Success Story (University of Michigan)

Arrhythmogenic Cardiomyopathy (AC and ARVC) | Frankel Cardiovascular Center | Michigan Medicine (umcvc.org)

Thank you for replying

by ItsVM - 2023-11-25 15:06:00

Thanks so much for the feedback.

Honestly I never even thought about going back and finding out more. I think I partly felt helpless to what happened and in the aftermath that sense of helplessness continued.

What's ridiculous is I kept apologizing/saying sorry when it wasn't working out - while I'm in discomfort. Which probably sums me up as an individual but I definitely need to be a little more assertive about finding out more.

I think I should also get a second opinion. It's so easy with the NHS to just take what you're given and accept your fate but a proactive approach is needed now with such a life changing condition.

You have it right

by Good Dog - 2023-11-25 16:55:36

It sounds like you know exactly what you need to do. That is good news! You are obviously very self-aware! I think we've all experienced stressful occasions when in the aftermath we wish we would have said or done something differently. In my case, I can think of about a million! I guess that is pretty normal. So don't beat yourself up. The important thing is that you know what you need to do now. The idea of getting a second opinion is an excellent one!

I wish you the very best! Please stay in-touch.

Sincerely,

Dave

Specialist?

by Penguin - 2023-11-25 17:21:09

Just wondering whether you are being cared for by a hospital with a specialist in your (rare) condition? I will no doubt be corrected if I'm wrong, but when you have a rare condition, I don't think it's unreasonable to ask to be seen by a specialst who is out of area if you can find one.

A quick google brought up this chap: https://www.rbhh-specialistcare.co.uk/specialists/antonis-pantazis. I have no prior knowledge of him or your diagnosis, so can't comment. 

https://www.topdoctors.co.uk/doctor/antonis-pantazis

I also discovered that The British Heart Foundation have an online support group, which you can be directed to from this link (near the bottom of the page).  Maybe it would be worth joining the group and then asking other patients for the names of cardiologists in your area who they have found helpful?

https://www.cardiomyopathy.org/about-cardiomyopathy/types-cardiomyopathy/arrhythmogenic-cardiomyopathy

Final thought - don't waste time feeling guilty. You deserve the right care and the best care you can find. Ask for it! 

Best Wishes

 

Links for Specialist again with links working!!

by ANDREW75 - 2023-11-25 19:07:21

 

Taking a lead from Penguin

Hi, I typed in “arrhythmogenic-cardiomyopathy UK” and got these links with names of two people you could contact. Since they specialize they might be very keen to help you.

University college London, perhaps email William J. McKenna, noted within.

Arrhythmogenic Cardiomyopathy: Etiology, Diagnosis, and Treatment | Annual Review of Medicine (annualreviews.org)

Willian J. Mckenna also mentioned in JACC Journals

Left-Dominant Arrhythmogenic Cardiomyopathy: An Under-Recognized Clinical Entity | Journal of the American College of Cardiology (jacc.org)

BJM Heart Journals UK. Perhaps email Perry M Elliott noted within

Arrhythmogenic cardiomyopathies (ACs): diagnosis, risk stratification and management | Heart (bmj.com)

Relevant to Andrew's Post?

by Penguin - 2023-11-25 19:16:07

https://thehearthive.org/

This link is to a register for people living with cardiomyopathy who may wish to find a research programme, or researcher who is interested in their condition. 

Possibly useful to you? 

There is also a current study which may or may not be relevant. This excerpt describes what they are doing, 

''The BRITISH study. The study will look at the importance of implantable cardioverter defibrillators (ICDs) in treating cardiac arrest in people with non-ischaemic cardiomyopathy (NICM).

The trial will see researchers in 35 UK hospitals recruit over 2,500 patients with non-ischaemic cardiomyopathy (NICM) and evidence of scarring of the heart muscle who will then be randomised to have an ICD or not.''

Your case could be relevant and perhaps this could be a starting point? Worth contacting them perhaps?  You can read about it here:

https://www.cardiomyopathy.org/our-research-campaigns/understanding-more/take-part-research/british-study

 

Thank you all again :)

by ItsVM - 2023-11-28 16:04:57

Thanks again.

I actually went to a Cardiomyopathy UK conference the Saturday before my surgery and have decided it's a support group I need to tap into.

I have also put in a letter for a debrief/review of my surgery.

Fingers crossed!

Well Done

by Penguin - 2023-11-28 16:11:46

Ah! That's great news. It's amazing how resourceful people are. Sounds like an ideal support group. Peer patients really help! 

Pleased to hear about the letter too.  Well done. I imagine it was difficult to write and send, but you've done the right thing. 

Best Wishes

 

You know you're wired when...

Your ICD has a better memory than you.

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