new ICD for diaphragm pacing

I wanted to post this to update everyone on my diaphragm pacing issue.

After a year of x-rays, CTs and an uninformed cardiologist, I finally found out that the thumping in my left abdomen was a condition called diaphragm pacing. The lead in my ventricle was unfortunately placed so that the electrical impulse required to pace my heart was bleeding through and either stimulating my left phrenic nerve or my diaphragm directly causing this non-threatening but definitely quality of life diminishing condition. It really drove my crazy.
Once I was diagnosed, it was good to know that it wasn't an aneurism or something worse, but it was still maddeningly bothersome. We tried to adjust the voltage and pulse width, to no avail. So I got the word that the lead had to be moved. And since the battery was half gone, it only made sense to replace it while we were in the pocket.
When we went into surgery, it turned into a double lead extaction, one new lead inserted and a new ICD. In other words, it was a big deal. What could have been a one hour surgery became a 5 hour ordeal. A hematoma formed because I take plavix, which made everything more complicated and painful.
I'm am recovering from my July 7th surgery now, and it is a real blessing to be able to lie on my left side or sit at a computer or sing in church without feeling that awful heartbeat, hiccup echoing in my diaphragm.
I would really like to hear from other people about their diaphragm pacing issues. Please feel free to message me.
Good luck to everyone with all your pacemaker and ICD issues.

I am on my fourth device now. I am 50 years young and glad to be alive. I would love to hear from you.

Sincerely,
Jeffrey
jpope5
jpope5@gmail.com

5 Comments

Abd pacing

by maryanne - 2008-08-04 10:08:08

Well I am so glad they got to the bottom of things for you. You know now having read your post I wonder if sometimes that is what I experience...I by no means get it to the point that your experienced...but I get these almost flutter like feelings in my upper diaphragm...and like you thought it was my abodominal aorta giving me a little flutter reminding me it was there as well.

I know my niece had very similar experiences as you and she too had her lead adjusted....she is much more comfortable now....technology...the ups and downs of it all.

Again wonderful news for you.....and enjoy your choir!!!

Exactly!

by Smart Redd - 2008-08-05 06:08:30

The diaphragm pacing is exactly what I experienced following my ICD implant on 3/13/08. I never considered it was anything other than an improperly adjusted setting or improperly placed lead because my 'fluttering' was sharp enough to be seen, heard, and felt. DH couldn't sleep either for all the (hic-cup-ing) noise and jerking.

My doctor, however, was convinced that it was all in my head since the x-rays showed the leads properly placed. It took this very squeaky wheel three visits and some contortionist movements before I managed to replicate the sensation and the nurse saw the jerking and called in a Medtronic specialist.

Took just a few adjustments for me rather than a completely new surgery to mostly control the problem. On the other hand, the pulsing had improved my bowel movements dramatically -- a situation the good doctor took credit for ("increased blood flow from the ICD" type of rot) -- that reverted back to normal once the pulsing was corrected. Are all heart doctors so dumb about how the rest of the body works?

Sheesh! It took you a year? I count myself extremely lucky to find a solution within 4-5 weeks. I'd never have survived a whole year of that!

Love, Red

Me too!

by Lexi3 - 2008-08-05 10:08:32

Nice to hear someone else is experiencing the same things. Since my 3rd pacer in April, I have had strong, odd, popping sensations in my right upper chest.
X-rays confirmed that the leads were still properly placed yet the senstations continued. Finally, through bending forward, etc, I was able to cause the popping feelings and it is due to my atrial lead. The tip is touching my diaphragm when I am in certain positions and causing these uncomfortable pops. I am going to my cardiologist monday to see what we should do. I am hoping and praying that it can be adjusted without surgery, since it was just put in. How do they determine if they can fix it without surgery?
Sorry you had to go through all this!!

8 years later... Guess what

by jpope5 - 2016-05-17 03:05:43

It turns out after all the drama and being told I was imagining everything the surgery etc...,,the lead that was the problem was the infamous failure ridden St. Jude Riata lead.
The symptoms leading up the the actual diaphragm pacing were so out of this world I would have to write a book. It was actually going on for several years under the blind eye of a really horrible cardiologist.

Diaphragm pacing and mild pacing pain

by jimterribak - 2017-08-18 23:19:07

Got my PM June of 2016.   I had diaphragm jerks, thumps, etc. when hr would fall to 60 bpm which is where pacing was set.  I have 2 lead PM for pauses that had me on verge of fainting.    EP brought bpm down to 45 and that stopped the diaphragm sensations.  I think  I still feel pacing in the form of mild pulsating pain in the middle of my chest.   It never lasts for over 30 seconds and is rhythmic like a heartbeat.   I am only pacing at 1 to 2 percent.  I don't feel it often but it can be triggered when I roll on my right side when in bed.   My EP said 3 % feel pacing.   Cardiologist just did a PET scan to rule out anything more serious.   Also echo cardiogram next week.  Will get results next week and see my EP for interrogation in a month.   I can live with this as long as I know it is not symptom of something serious.   I really think I am feeling pacing.   Anybody else have this symptom?

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Member Quotes

The pacer systems are really very reliable. The main problem is the incompetent programming of them. If yours is working well for you, get on with life and enjoy it. You probably are more at risk of problems with a valve job than the pacer.