Leads coming out?

Hi all,
Im very new to this site. I just had my pacemaker implanted at the end of July this year. It has been a very very traumatic experience for me (I'm 33 and had a massive heart tumour I knew nothing about). Anyway, I went for my 6 week check up and told them the site was so itchy. The RN freaked out and told me not to itch it. I told her I just rub it gently and she said that can cause twiddlers syndrome and cause the leads at the unit to pull out.

Well....now I'm freaked out. I am totally dependent on this pm. My baseline heart rate is less than 30...in fact we dont' even know how low it goes. So I'm totally freaked that the leads at the body of the pm can just pop out.

What's worse is the cardiologist checked the pm and he shifted it a bit and now i keep getting zinging feelings that make me rub it gently still. And it feels so tender near the lead area.

So I'm terrified I will just drop dead! I need help from the experts!

7 Comments

I'm working on it

by daisygurl - 2012-09-23 05:09:13

Thanks guys...I do appreciate it. I just can't seem to stop touching it! I obsess about it now - It was the worst thing she could have told me. So I keep palpating the area around the pacemaker and feeling it. I know it is bad but I am trying very hard to not.

My bra strap definitely is uncomfortable. I can't stand it. And I think that, coupled with me touching it, is causing it to be even more irritated. I just want to sit with no shirt on and leave it alone.

I have tried blowing on it...that seems to help so maybe a handheld fan is a good idea!


Itching PM

by donb - 2012-09-23 06:09:23

HI, I want to comment also as I became a member to this site with similar problems with servere itching which finally developed into erosion and my PM had to be removed. This particular PM was my 3rd and my cardiologist remarked at the time that 1 of my 2 leads had a slight crack in it right where it terminated at the PM. He said he attached the leads together for support and it would be OK.

About 1 year later the itching got worse with scar tissue started from the top where the leads terminate into the PM. As I was doing lots of arm & chest workout in Cardiac Rehab (heart stent), the problem got worse & finally a lower corner started to erode. When the spot got dark it was decided to remove my PM & I was fortunate not to develop infection. I never got any explanation but a member of this site explained that possibly with a lead insulation fracture that body fluids are electrically conductive and could start this whole episode. In my case I've always been very sensitive to any electrode patches. Hopefully your itching will subside especially if you use any form of Bendryl.

donb

Stoppng The PM Itch

by SMITTY - 2012-09-23 07:09:10

Hello Daisygurl,

My first comment is that nurse needs to be doing something she knows a little about. I don't know why some of these people that do our checkups feel that they must tell us something even when they are clueless as to what is going on. In doing so they frequently make things sound worse than they are. Now I'm not saying PM syndrome is not serious and yes you can get pacemaker syndrome by constantly, or frequently, manipulating or moving your pacemaker, but light scratching of the implant site is not going to cause pacemaker syndrome. For some people with busy hands that PM becomes a new toy which they are constantly and usually unaware they are pushing, pulling or trying to move their pacemaker.

As for itching and needing to scratch it area I can tell you what I do. Sometimes it feels as if a colony of pissants has moved in under my shirt and I think I just have to scratch the area. I will scratch, but very lightly until I can get what I have found that works best for me. That is to apply a thin coating of the over the counter medicine Lanacane. I use it for treatment of my PM itch and the rest of the family uses it to stop the sting and itching from bug bites.

There are several products marketed under the name of Lanacane, so if you purchase any be sure you get the one that has Benzocaine (20%) as one of the active ingredients. It is harmless to the PM but will do a good job of stopping itching.

Good luck,

Smitty

leads

by Tracey_E - 2012-09-23 08:09:28

If you are just gently rubbing it, you are not going to pull out a lead! They are screwed in tightly at the top and by now they are secured well at the bottom where they attach to the heart. If he did something to make it feel worse, go back and get it checked again, but it sounds like normal healing to me. It can get that zingy feeling when the nerves are knitting back together. It feels weird but is normal and goes away in a few months. Rubbing it will make it feel more tender so try to resist the urge. Is it inside or the skin? If it's the skin, aloe or vitamin E will help.

btw, my underlying rate is lower than yours, mid 20's most of the time, and I've been fine since I got my first pm in 1993. These things are incredibly dependable.

That nurse should be...

by donr - 2012-09-23 11:09:16

...strung up by the thumbs & flogged w/ a cat-o-nine-tails!

It will take one heck of a lot more than justrubbing the surface to cause "Twiddler's Syndrome"!My PM scar itched all the time for the first couple months & still itches at random. You really should resist the temptation to rub it. Take Tracey's advice on that issue.

There is an X-Ray you need to look at in the gallery, posted by mamalizz. If you will notice, there is a lot of slack in your leads between the PM & the vein where it enters just below the collar bone. To pull a lead loose inside your heart, you'd have to pull ALL that slack, plus the slack inside the vein. That would be pretty tough to do, so relax!

You wanna string her up or let her feel the "Bite of the Cat"?

bra

by Tracey_E - 2012-09-24 09:09:54

I wear the tank tops with the shelf bra built in rather than a regular bra for weeks after a replacement, much less rubbing than a regular bra.

Hi Daisygurl

by Jax - 2012-09-24 12:09:47

I had itching -- in fact I still have it from time to time. I try not to scratch but sometimes I do. I try to scratch just near the itch not on the incision. It seems to help. Sometimes I put a drop of bacitricin on it. Dr said that was ok but only use very little.

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