Anyone here had their icd removed?

Im 26 yeara old, I've had my ICD for 20 months now, since having the icd I have had problem after problem, 

1 Month after surgery I got a blood clot in the lung, followed by a heart attack.

4 months post surgery I got another blood clot which blocked most blood flow to my left arm, which is now in constant pain, I can't hold anything longer then 10 seconds or my arm gets very weak and swollen (yes I still have the clot there, doctors say it will never desolve)

For the last 6 or so months my legs are constantly aching, I always get a electrical zap feeling in my calves which I've had numerous scans on and nothing shows up.

My icd has been helpful in some ways showing long periods of AF which I have under control now and some small cases of VT

But besides these I feel my ICD has killed everything I enjoyed about life.

I'm also on warfarin and verapamil (recently swapped from metropolol)

Has anyone here had their icd removed and how did that go for you?

 


2 Comments

Removal of Devices Rarely if ever Done

by Swangirl - 2019-11-02 03:02:35

I see you are in Australia so I don't know what the medical care is like there.  I'm so sorry what you are going through being so young.  It's very unlikely you will be able to get your ICD removed if the doctor doesn't agree with you that it should come out.  It's probably an elective procedure that wouldn't be covered financially and if your life would be compromised without it a doctor would be liable for taking it out, possibly a wrongful death complaint.  

At 46 I had a pacemaker that rarely paced and after 6 years when it hadn't paced even once I couldn't get it taken out.  My doctor said in his practice it had never been done without a replacement and there wasn't even a code for it.  

Perhaps you can get another medical opinion about the symptoms that are causing you so much pain and suffering.  I urge you to be the squeaky wheel and don't accept that this is your new normal.

You need a comprehensive review and a second opinion

by crustyg - 2019-11-02 04:14:47

Hi: You've really been in the wars and have suffered a lot. It seems likely to me that you have more than one major problem.  The clot in the lung and heart attack would not typically be due to the implanted device alone, although the clot affecting your left arm might well be. I doubt anyone fitted you with an ICD for atrial arrhythmias alone so you've some tendency to ventricular rhythm problems for which an ICD would be life-saving (the VT you mentioned).

It sounds a lot as though you need a comprehensive work-up for a hyper-coagulation condition - they are all rare, but doctors don't find them if they don't actively look.  In medicine we always start with the assumption that there's one underlying condition, especially in young patients, but we need to keep an open mind about the possibility that there are two problems which may not be related (although having implanted devices+leads can make hypercoagulation worse).

It seems that you have focussed on the ICD as the source of your problems and complications and are pinning your hopes for a better life on having the ICD removed.  It's a natural emotional approach, but it's unlikely to be correct, I fear.  There may be a lot that you have discussed with your doctors that you haven't shared here, but it sounds to me as though there's a lot more going on than heart rhythm+ICD issues whether you are aware of it or not.

Best wishes.

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