Complete extraction of pacemaker and leads

Hi! I'm member here since 3 years, but only because our daughter got a PM aged 6 (Syncopes, AV Block 3)

Eversince the implant the pm showed only 1% or 0%. Now one of the leads is too short so action is needed.

The docs have put the pm down to 30 since 2 months and nothing happened, no dizziness or syncopes, nothing. They are now recommending to remove the PM because they think it's not necessary anymore and to give her heart the possiblity to grown without leads and have a life without a pm.

We are told by the EPs that her case is very seldom. The cause of the block could never be found, they tested all they could. They assume it's from an infection and the heart recovered.

On the one hand I would be more than happy she is healthy again. But of course the removal of the leads is not without risks and there are not many hospitals able to do it for kids.

Did we have any similar cases here in this forum?

3 Comments

Wow

by Tracey_E - 2024-05-11 18:17:49

I've heard of kids having extractions, but never not needing the pacer again after. How wonderful! Turning it down to 30 was a great way to safely test it. 

Expertise

by Penguin - 2024-05-13 06:01:59

I see that you're in Germany.  I'm not familiar with your health system or which hospitals over there specialise in paediatric medicine, but presumably you have some form of private health care. 

As you may know the UK have a couple of excellent paediatric specialist hospitals - The Evelina and Great Ormond Street in London come to mind. I don't know who their cardiologists are or whether these centres are the best for cardiology but the websites may be helpful. 

https://www.evelinalondon.nhs.uk/contact-us/contact-us.aspx

https://www.gosh.nhs.uk/

You could certainly ask for an opinion / consultation and possibly you could do it online, if your insurance allows for this?

I wish you luck and hope that your little one will benefit from expertise and kindness and make a full recovery. 

Best Wishes

 

Private International Consult

by Penguin - 2024-05-15 14:49:44

This is the link for private / international care at Great Ormond Street Hospital, London

https://www.gosh.com.kw/

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I, too, am feeling tons better since my implant.