Pacemaker Flipped?

Hi, Think PM flipped over in pocket. Acute issue. Cardiologist/Center on-call are NOT calling back. It feels weird. Implanted 4/2019, have lost about 50lbs in past 18+ months (44yo F, Chronic Pericardial Effusion, unrelated to PM, treated with Colchicine.) 

Past month has gotten weirder, will turn sideways and get caught on my bra or tank top- DISCONCERTING! But it seems like it flipped. Bra feels tight where it didn't, I don't want to manipulate or touch the area any more than necessary.

Not PM dependent (? Wasn't.)  Have called cardiologist hotline 3x (still waiting hours later...) I don't think the ER is necessary b/c it could've happened days ago. 
 

Anyone have this happen? I know "wandering pacemaker syndrome" is a thing, and I've lost a lot of weight. Thanks.

 

(sorry for any grammar/typos. Pretty flipped out so casting a wide net!)

EDIT TO UPDATE:

Went to ER Sat ~12hrs after posting. Didn't hear  from Doc until TUES (4 days after calling.) PM & Leads in place. Said it's possible it flipped & flipped back, but probably just was wedged sideways making me think it flipped. Have seen my surgeon & a PA. The pocket IS loose, but not concerningly so. Was advised to switch bra styles & continue wearing a tight tank top (shapewear.) Surgeon said the only real option was to change the site to underneath the muscle, which he said he'd do if both my Doc & I thought best. (I don't want more surgeries!) He cautioned me about the risk of infection and longer recovery time.

I definitely don't want to do that! I'm never going to be working out my upper arms- I have arthritis & cubital tunnel syndrome. 

He said I have 11.9 years left on it- I've had for 3yrs! (I know the time will shorten a lot, but initially I was told 6-7yrs.)

Figured I'd update in case anyone reads this with a similar issue! Thanks again folks.

 

 

 

 

 

5 Comments

ER is appropriate in my opinion for some urgent checks

by Gemita - 2022-04-09 06:26:38

Miss Ashleigh,

With a weight loss of ? 50 lbs, I am not surprised you have had movement of your device.

My husband recalls his pacemaker "flipping" on one occasion while he was in the shower.  He promptly flipped it back into place, but this is not recommended.  We had an immediate device check and all was well but he was told never to do this again.

Our devices are usually held in place by a suture, but this isn't alway the case, or a suture may break before our device is securely embedded into tissue.  With your weight loss there could well have been movement of your device.  There is a condition known as Twiddler's Syndrome where manipulation of our device, deliberately or accidentally, can cause lead dislodgement, failure to capture and other problems.

As it is the weekend and this has been going on for a month or so, I believe an ER visit is warranted to have the position of your pacemaker checked and more essentially to ensure that the leads are still in a good position and are not being twisted or potentially damaged by a moving device.  This would be my main concern.  I find it hard to believe that you could have left it so long before seeking help?

As to your weight loss, that sounds serious (unless intentional) and needs to be investigated as a separate issue so ER for some checks is the best place for answers.  I wish you well

Thanks

by MissAshleigh - 2022-04-09 11:50:34

Appreciate everything! Glad your Husband is doing well!

For context, my weight loss has been intentional & medically approved. I quit drinking alcohol shortly after PM, started exercising more & logging CICO; my BMI is now 23.2.

"Hard to believe you'd have left it so long without seeking help."

HA! I've sought help. I've been concerned about the pocket re: weight loss, have had visits about working out 9mo ago. My Doc went out of office & I had 2 different docs fill in + pandemic (no in-person device checks, only echos for P.E.)

I've brought it up to Doc(s), but I've been dealing with idiopathic chronic Pericardial Effusion (P.E.) & every visit is focused on swelling of my heart sac. I get echocardiograms every time I go and the conversation is Colchicine-centric. I ask about other things and get told "no big deal, you worry too much."
 

My Fitbit stats show I didn't go below 55 BPM last night, so that tells me my leads are probably still working. I'm getting ready to Uber to an ER. Still NO CALL from my Cardiologist Office! (i've called 4x, it's been confirmed that the doctor on call received a message that our waited until I knew Dr was on call, still nothing.)

Thanks again!!! Really!!!!!!!  Thank you!

 

 

disconcerting

by Tracey_E - 2022-04-11 14:20:43

It is definitely disconcerting if it's flipped!! An xray would be in order to confirm your suspicion. Do you have a home monitor? If so, I'd send a report so they can confirm both leads are working properly. That said, odds are if you feel good otherwise and your heart rate isn't dipping below 50-60, then it is still working normally. How painful it is will determine if it needs to be repositioned. 

I caught the edge of mine scaling a wall in a Spartan race (crazy fluke!) and it permanently shifted. My doctor offered to move it, but it's uncomfortable but not painful so I chose to leave it alone until my next replacement. 

more disconcerting

by Tracey_E - 2022-04-11 14:21:39

The most disconcerting to me would be the lack of response from your doctor's office. 

Flipped

by jennk - 2022-04-16 10:55:37

This happened to me about three months post surgery.  I went to the ER as     it was my replacement and hadn't ever had this happen.  The ER doctor confirmed it and checked the leads to make sure they were still in place.  He sent me to my cardiologist and then back to surgery to have it sutured back in place.  The concern, besides it being uncomfortable, was that it would keep flipping and damage the leads.  I would definitely go to the ER since your doctor is not responding. Good luck.

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