Am I alone:(

I have scar tissue building around my leads. And lately i feel how like when they slow it. :( Im tired and it hurts and it burns and every now and then i get a palpation. :( I'm going to the doctors tomorrow but im sick of feeling like this:(

8 Comments

Not Unusual

by donr - 2012-05-29 01:05:04

Mallory: Scar tissue normally builds around leads in the vein. Is that what you are talking about? or scar tissue else where that is unusual?

Scar tissue should NOT make you feel this way.

You did not say WHY you have your PM - that makes a big difference to us. We all have them for different reasons & Can only GUESS what could be bothering you.

After nearly 5 yrs, this should not be happening.

A palpitation every now & then, as you describe, is not unusual, & my first guess is a PVC. But, not knowing any more about you, that's pure, wild guessing.

If you get a chance, firre off some more data about your situation tonight & an answer may be awaiting you in the AM>

Don

More info

by Mallory - 2012-05-29 01:05:48

I have CCHB (Congenital Complete Heart Block) Its not in the vain its where the lead implants into my heart. It comes in waves. Like I cant explain it. Its not there all day it come every 30 min to every 2 hours. I just want it to go away. :(

Well,

by Mallory - 2012-05-29 02:05:42

Don they ran the test 3 months ago(at that point i only went once a year) and they found out on some report. They said they want me in every 3 months and I know that's bad cause when i did my 24h holters closer the end before my pm they did that then he told me what was going on.

Gellia,No they are not waiting. they said once it starts to fail and not get enough volts they are gonna explore my options because my pacer still read 10+ years. he has talked about the surgery. he said he more then likely will do it because he retires this summer and wants me to switch to adult Cardiology with no problems.

Hi again,

by Gellia3 - 2012-05-29 08:05:51

I don't think it will be too bad for you. They'll probably just run another wire and cap off the bad one like they did with mine.
All I had to remember was to keep my arm down shoulder height or less and not to lift anything heavy. It's mostly the same as what your first surgery was like.

I had my wire scar over back in 1982 and have had my "new" wire since then. Once you heal from the surgery, things will pretty much be the same.

GOOD LUCK! I hope it all goes great for you!
Best to you,
Gellia

Hi,

by Gellia3 - 2012-05-29 09:05:21

I had a ventricle lead that scarred over at the implant site in the heart wall. Sounds like what you mean. It eventually lost capture and had to be replaced. I also have CCHB and had a new wire inserted and the old scarred wire left there after capping and suturing into place.

I also felt the same way as you describe. If your wire is becoming scarred and you are loosing capture, you will need surgery and a new wire implanted.

Are they waiting until you have a replacement battery? Sometimes they can turn the voltage up on the bad lead and wait. I couldn't because I was very symptomatic.

I have three wires. Two functioning to my dual chamber PM and the one abandoned wire.

With symptoms coming every few hours, I would want to get that wire done sooner rather than later. Has your dr recommended surgery and replacement?

Hope this helps.
Best to you,
Gellia

Another question about scar tissue forming

by donr - 2012-05-29 09:05:28

How do you know that it's forming around the implant sites inside your heart? Diagnosis from a test result or just a guess?

Does something show up in a PM interrogation report that indicates scarring?

There are several folks here w/ those kinds of problems they may be able to help.

Don

AH, so you are under 18???

by donr - 2012-05-29 11:05:11

Mallory - all the extra info you gave helps understand your situation.

How old ARE you? Makes a difference in how you are treated by the system. You should go back & complete your profile.

Note the different answers you have received as you added to the post?

A word of advice - as you switch to adult cardiology, you must ask questions about what is happening to you and - MOST IMPORTANT - WHY. Also, get copies of all reports & have them explained to you right away.

You are apparently a long time sufferer of cardiac problems & as you grow older, you will have to understand what is happening so you can make intelligent decisions.

The best to you.

Don

More info again

by Mallory - 2012-05-30 12:05:30

Gellia I dont remember much of my recovery due to the fact I lost my grandfather while in my second surgery to fix and place my pacemaker. (it slipped 3 inches due to me vomiting after waking up.) but thank you:)





Don Im 17. All my stuff will be transferred with me. I see military doctors. and my doctor already had my next doctor picked cause he is retiring.

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