Phrenic stim after BIV/ICD implant

After implantation of BiV/ICD for LBBB and EF of 30 for Idiopathic cardiomyopathy, I developed twitching just under my left breast on day 5 after surgery. Its worse when I lay on my left side, cough or belch, or get a rise in heart rate suddenly. I went to device clinic and out of 17 possible setting on my third lead, none keot the twitching away. I know the lead was very close to the phrenic nerve but there was no abnormal stim during surgery or right after.Has anyone had this and what options do you have? I see the surgeon in 8 days . My surgery was last Monday. For now they turned down the current to lowest level that still paced me. Thank you!!


8 Comments

Twitching

by Grateful Heart - 2014-12-09 11:12:58


I got my Bi-V/ ICD for similar reasons. LBBB, SSS and EF of 24%....Idiopathic Cardiomyopathy.

Shortly after my implant I would mention to the Docs at different visits that I felt twitching under my left breast and could not lay on my left side without feeling the twitching even harder. None of my Cardios seemed concerned and I didn't know what was normal with having a device so I stopped complaining about it. Maybe they didn't believe me...I don't know.

After about 2 years I started to have pretty constant pain under my left breast. I went to the ER and was admitted. They ran some tests and after 2 days the covering Doc said they didn't find anything wrong so they sent me home.

3 months later, the next interrogation showed a problem with my RV lead not capturing. The Right Ventricle crosses over your heart and the RV lead is placed....yep, under your left breast. Right where I had been feeling the pain for months before and the twitching before that. Apparently, my body felt it long before the interrogation picked it up. They turned up the voltage so the lead would capture. They had to turn it up high apparently because now it was pounding in my chest. They lowered it back down and said I needed a lead revision (replacement) to fix it. The surgery date was scheduled about 6 weeks later.

I'm telling you all of this not to scare you but for 2 reasons.

1) You know your body best. If you feel something is not right, then don't give up until they figure it out. I didn't know about this site then and I had no one to ask.

2) Also, so you don't panic. As you said, you are still being paced and the defibrillator would work if needed. Again, my date for the revision was about 6 weeks after so there was no rush to get it done.

It is possible you may need a lead revision too. Take it a step at a time and see what your Doc says. Maybe it will settle down for you BUT Listen to your body.

Ask any questions and learn all you can about your condition and device. Let us know how it goes with your Doc.

You know a lot more now than I did. :-)

Grateful Heart

To Grateful Heart

by Bigheart1 - 2014-12-11 09:12:01

I meant to ask you if your EF came up from 24% over this year or so you have had the BIV???
BigHeart

twitching

by Bigheart1 - 2014-12-11 09:12:55

Thank you Grateful Heart. I hope not to need a revision but I do know this third lead is very close to my diaphragm and phrenic nerve, so I'm staying on the docs to keep checking it!

Saw Doc at Device lab

by Bigheart1 - 2014-12-12 06:12:54

I saw doc at device lab and he thinks problem is with RV lead! Grateful Heart you may be right on! So he switched a few things. So far no twitching but it seems harder to breathe after 2 hours of stimulating me and coughing due to diaphragm stim.The doc said my RV is pacing at 65% and my LV at 100%. He was a little baffled as to why. So for now he altered the RV lead and I get rechecked next TH. He did say he may just pace me from the LV only and that would work too if the RV is a problem. I did not think that was possible!
He said yes. He went to Yale and Harvard and is borderline brilliant so I am leaving this to him and glad he could see that changes had occurred since the surgery. All leads are in place via x-ray. Comments or input are welcome. I am brand new to this. I"M hoping whatever the case is, I just feel better and my heart gets stronger.

Yes BigHeart

by Grateful Heart - 2014-12-12 12:12:03


I forgot to mention, my EF went from 24% to 50% within the first year. It has been 50% ever since (My device is now 6 years old). Normal is 50%-70%, so I'm on the low side of normal. A huge improvement.

Also, my heart is no longer enlarged. With the third lead in the left ventricle, your ventricles are pacing in sync. These devices are truly amazing.

My diaphragm was being paced.

You'll be ok and you will feel better once this is resolved.

Keep us posted.

Grateful Heart

RV lead

by Grateful Heart - 2014-12-13 03:12:44


It sounds like your Doc is on top of it and you are in good hands.

Good to hear BigHeart.

Grateful Heart

PVC"S

by Bigheart1 - 2014-12-13 11:12:03

Now that my doc altered my RV and LV lead at my visit I seem to have rid of the "twitching" clicking sensations in my chest but I am having lots of strong PVC's and other fast heart runs. I underwent 2 hours of stim testing with the Boston Scientific rep and the Device nurse and doc. Can you get that from so much stimulation from the testing? The testing made me cough a lot and my chest hurts pretty bad today. I'm assuming this is from so much testing yesterday but wanted feedback if possible! One day I hope all this is a long lost memory!!

Twitching

by Happygirl8 - 2017-06-17 16:03:57

big heart1- I'm now 17 days after my pacemaker surgery,   I was reading your comments on twitching.  My twitching under left breast also started about 4 days after my pacemaker surgery.  I went back to see doctor about a week ago .  First they turned up the power and I almost jumped through the roof, it twitched  so badly.  So they decided to turn down the power in that lead.   But, now I still get the twitching .  When I called the second time, the nurse said she thinks it's just a muscle trying to heal.  ??? She doesn't believe it's that lead. If I still have it by july5, they want to see me! How did your twitching resolve?  Did they ever have to replace your lead?

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