Pacemaker lead

extraction

by Tracey_E - 2017-09-04 14:07:14

There are some other parents of paced children, hopefully one of them will step in and share some personal experience.

First of all, kids outgrow leads so this is pretty common and 3 years old isn't really old at all so shouldn't be high risk.  Lead extraction has come a long way both in the quality of the lasers they use and the number of doctors who are very experienced at it, so complication rates are much lower than they used to be and it's to be taken seriously but no longer considered high risk. I'm no expert, but I believe 5% is very high.

I'm an adult with the same condition as your daughter. My ep is the head of electrrophysiology at a very large childrens hospital. Half his patients are children, half are adult congenital, so he does a lot of lead removal (big part of why I chose him!). In all the surgeries his team has done total since extraction became common, he's only had 2 patients end up complications that led to open heart, and both of those patients recovered 100%. I didn't ask how many he's done but it's well into the hundreds so the number isn't even close to 1% for his team. Ask your daughter's team what their stats are, and how often the do removal. If they don't do 100+ a year, if you don't like the numbers, you may want to consider traveling to someone more specialized. 

An aside, my current leads are 20+ years old. I don't have room for more so when one of them stops working, it'll be time to extract so I've already done a lot of research. The age of mine makes me higher risk than normal plus I don't have a heart surgery history which apparentlhy makes the heart more vulnerable (who knew??) so he won't be doing mine. There is another surgeon at a university hospital another hour away who does even more complicated cases than my doc does, so that's where he plans to send me.  

This is to be taken seriously, but there's no reason to think your little girl won't breeze through it and bounce back quickly. Don't be afraid to ask the surgeon a lot of questions, and if you don't like the answers it's ok to ask for a referral to someone more specialized and possibly even travel. Good luck!!!

Pacemaker

by pearleamy - 2017-09-04 14:34:43

Sorry shes 5 years of age had this pacemaker 3 years her 2nd one since birth. Is 5 percent good or bad I thought that sounded good but maybe not ??

5%

by Tracey_E - 2017-09-04 19:11:35

5% is good, but I was saying that I think it's a lot less than that. 

3 or 5, it's still not a lot of time for scar tissue to get bad. Risk goes up after 10. 

95%

by Bionic Beat - 2017-09-04 19:24:32

Hi,

If there's a 5% risk factor, it means she has a 95% chance of being just fine.

From my time in nursing, 5% is a normal surgical risk.   They are obligated to let you know of risk factors but they are infrequent and usally correctable.

I hope it all goes smoothly.  its hard when its your child, I know.

Best Wishes,

Bionic Beat

Pacemaker leads

by pearleamy - 2017-09-05 05:44:34

thanks both , I was told they were hoping lead would last 10 years so a bit disappointing, my other worry was if lead was in this amount of time then surly it would be even more difficult to extract ? if so does this mean you run out of options on where to put new leads as she's only 5 and would need many more in the future ? 

Lead extraction

by Good Dog - 2017-09-05 08:29:51

Actually, the risk of complication is only in the 0.5% to 2% range depending on the doctor and hospital. The Cleveland Clinic has a complication rate of 0.5%. So it is very low. You should rest easy knowing that it is not only a low risk procedure, but children are very resilient. It is usually the very old and sick that are at greater risk. If you care to understand the procedure, here is a link:

https://my.clevelandclinic.org/health/articles/lead-extraction

I wish you the very best and trust that your daughter will be just fine.

Sincerely,

David

kids

by Tracey_E - 2017-09-05 11:08:06

Kids are different than adults, so I'm not sure how they handle their leads. I know it's common for them to go through several sets as they grow. I thought kids mostly got epicardial leads with abdominal placement until they were closer to full grown, when they move it to the chest and put the leads in the vein. It doesn't sound like that's how your daughter is set up so that's a question for the doctor.

In adults, it depends on the doctor. Some like to extract when a lead goes bad and start new in younger (adult) patients. Others (like mine) add more until there's no more room then extract. So far I haven't reached that point, but extraction is next because I am out of room in the vein. We are the first generations to be paced long term so there isn't a lot of research to go on. 

Pacemaker

by pearleamy - 2017-09-06 06:39:52

Thanks for all kind messages and info .Pearle originally had a pacemaker fitted outside her body when she was born weighing 1 pound my wife unknown to us had lupus antibody problem which attacked pearle when my wife  was pregnant causing the heart block she was delivered early 28 weeks.Pearle then had a pacemaker fitted in stomach  until she was 2 years of age then had it changed to under her armpit through the vein she has operation on Tuesday to extract it and replace it there not sure why it's showing a fracture maybe because she's grown or she's obviously very active and a bit of a tom boy so is always falling over or getting up to mischief but I wouldn't want to change that want her to be as normal as possible its difficult cause she knows she's got one but feels no different and dosnt fully understand 

Children

by Pacemum - 2017-09-06 16:38:10

I am surprised that Pearle's doctors went through the vien so young.  The issues are probably linked to growth and they may have to now extract due to lack of room.

My daughter is 17 and has been paced since about 4 months of age.  She has not yet had any leads extracted so I am unable to help in that respect.

As the others have pointed out focus on the 95% no complications rather than the other way around.  Sometimes the numbers are more frightening than reality.  At my daugthers last hospital appointment her oxygen sats were 78%. My daughters response was I will worry if they hit 50%.  She does have other heart defects alongside the pacing which need addressing but dispite this looks and feels alright and is at college along with everyone else her age. Her doctors will address all issues at the same time towards the end of next year when pacemaker box change is due.

Hope that everything goes well on Tuesday. 

Pacemaker

by pearleamy - 2017-09-07 14:37:41

Thanks for the help kind regards all 

Pacemaker

by pearleamy - 2017-09-13 10:13:11

My daughter had operation they extracted the lead from vein & vein collapsed not able to use left vein again she's had it fitted in her abdomen not through the vein and this time fitted a duel pacemaker and decided not to use right Vein on her right side until she is bigger. I feel very worried now she has lost this left vein to insert a lead cardiologist said this is not something to worry about but surly this gives her less options in the future ??