Daughter with lead problem

Hi every one, I am new to this site, just found it a couple of weeks ago. I don't have a pacemaker myself, but my daughter has one. I answered a message under Parents and kids, but I now post my own message here, as I hope more people will see it.
My daughter who is ten yrs received her first pm in september 07 due to complete heart block following surgery, she had a partial avsd. In february 2009 she started feeling dizzy, this lead to her second pm implant i March 09 due to high treshold and loss of capture. This July she started feeling dizzy again - the same thing again, high treshold and loss of capture on the ventricular lead, so she is now on her 3rd pm since 2007. We are very concerned about this happening again although they have tried to place her lead in her apex instead of the septum this time. They mentioned scar tissue as a possible reason but they cannot say anything specific, there were no evident dislodgement of the lead. We had hoped that the pm would last at least 5 years and she is also aware that this is very unusual and may happen again. I have searched the net very thoroughly and have found out, that this is referred to as recurrent exit block or recurrent micro dislodgement, it is very rare and no one can give a certain reason as to why. Are there anyone at this site who have any suggestions?
A concerned mother in Denmark

6 Comments

Hi,

by Gellia3 - 2010-09-17 03:09:40

Whereas I don't think I had quite the same problem, I too had "loss of capture" due to scar tissue on my ventricle lead. At the time I had a single lead PM and was 100% paced.

The solution for me was a whole new wire set. They capped the scarred over wire and gave me a dual chamber PM with two new wires.

Is your daughter's doctor still trying with the same old wire? If so, perhaps a whole new wire would help. She would wind up with the extra one, but like mine, they can be capped and sutured into place, usually causing no problem.

As I said, I'm not sure it helps, but is just a thought.
My best to you and your daughter.

Gellia
P.S. I have had a PM for 35 years now.

Hello

by 8thID - 2010-09-17 09:09:44

First let me say that my heart goes out to you and your daughter. I wish I had some information that would help. My only suggestion would be: Can you get a second opinion, or can you seek out another physician new to her case? Maybe a different doctor coming in fresh to look at the problem could provide some insights into her condition. I truly wish I could help more. I wish your family the best. Take Care!

Jeff

what age?

by sherida - 2010-09-18 06:09:54

Hello!
My first question is: how old was your daughter when receiving her first pacemaker? When growing, venous leads can get dislodged.
Scartissue is a very plausible cause. Best option might be a whole new (set of) wire(s).
Wishing you and your daughter all the best!
Sherida

Similar problem...

by arlyn - 2010-09-18 09:09:35

I had my pacemaker implanted on 8/4/10. At my 2-week checkup, everything was great. By my 6-week checkup, my atrial lead had become dislodged. They were able to look back and see that it lost contact on 8/31.

I went back into surgery yesterday to have it corrected. The surgery went well and they said it looked good - but somehow between the cath lab and getting back to my room, it became dislodged AGAIN.

My doc consulted with a colleague and the EP. We are going to do this again on Wednesday, but he is going to replace the lead (I have Biotronik) with a St. Jude's lead. He said that the pacemakers are typically designed for the heart of someone much older (I'm 33) and their theory is that my body doesn't like that particular lead for some reason. I am hoping and praying it will work this time!

Three surgeries in 7 weeks is a major bummer. I am so sore today and haven't gotten much sleep - and it's especially frustrating knowing it's not even fixed!

I feel bad for your daughter and I hope they will come up with a solution that will work for her. I will try to remember to come back and update if the change in lead manufacturer worked for me!

Loss of capture

by ElectricFrank - 2010-09-18 12:09:08

I'm surprised that they replaced the pacemaker. As you and Gellia both mentioned loss of capture has to do with the leads rather than the pacemaker (other that a defective pacer or weak battery). With someone that young I wonder if the rapid changes in her heart as she grows could cause a change in active locations on her heart wall.

wishing her well,

frank

thank you!

by lok - 2010-09-21 12:09:27

Hi every one who answered my message

Thank you very much for your replies - my daughter is playing in the garden right now with 3 of her school friends, the sun is shining and I almost don't think of the pm problem right now, nice!

When I wrote that they changed my daughters pm twice, they also changed both leads both times so they didn't try to reposition the lead but gave her a whole new system both times which feels kind of comforting. But as I stated, it happened again with a whole new set of leads, however, only the ventricular lead, never the atrial lead. I think Arlyn maybe right, for some reason the heart tissue does not agree with the lead. If it happens again they will give her a new type of lead. She has active fixation leads, St. Judes, her pm is also at St. Judes.
She was seven when she got her first pm, now she is ten.
I am very glad I found this site, there seems to be much activity and a lot of response when you post a messsage.
Once again for your comforting words to my daughter.

You know you're wired when...

Lifetime warranty no longer gives peace of mind.

Member Quotes

I can bike a 40-50 tour with no trouble.