Pacemaker Pocket Issue

Hello

My daughter is 19 and was born with Complete Congenital Heart Block.  She had her first pacemaker implanted in her abdomen when she was 3 years old. When she was 6 her pacemaker was moved to a transvenous system.  Her pacemaker in the abdomen was removed with the leads left in.  She began having pain in the abdominal pocket about 6 months ago. It sometimes is unbearable.  Her Cardiologist referred her to a general surgeon who thought perhaps she had an incisional hernia.  An ultrasound was done along with x rays. A hernia was ruled out. The x ray showed a broken lead which the surgeon thought could be causing the pain. After conferencing on the results her Cardiologist indicated the broken lead is too high up to be causing the pain in the abdomen. 

 

My question to this group is I’m wondering if anyone has has this experience and, if so, what was the treatment?  Anyone have any thoughts/ideas on what it could be?  She called me in tears from College telling me it was hurting her again. It comes and goes as far as the acute pain, but is sore all the time. She and my husband/myself are frustrated.  Any help would be greatly appreciated.  We are going to go back to her Cardiologist in a few weeks. 

 

Thank you SO much in advance!

 

 

2 Comments

Pain

by The real Patch - 2018-03-20 22:13:47

It's total BULL S*^$ that they don't remove unused leads, we're not junk yards where they can leave unused scrap to rot and cause long term problems. Extraction of leads is quite frankly not that difficult and is done all the time. 

I agree it sounds like a broken lead moving around and causing intermittent pain. I'd get a second opinion 

Could be scar tissue

by SandiRB - 2018-04-18 07:08:59

Hi,

First keep in mind that it is extremely difficult and risky to remove abdominal leads because of their location. I know my doctors have told me if it is ever needed that very few hospitals and doctors are able to remove them.

Second, there is a chance it may be scar tissue that has developed. I have scar tissue pain in the location of my first pacemaker (under left ribcage) and that was 14 years ago. The main is dealable at this point and is mainly not there but it will act up and can have me close to tears at points. Scar tissue pain does not also start right away. Try ice and over the counter meds.

Hope she is able to find some comfort

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