Two month post op - Twiddler's syndrome?

This is my first post to this site, and for the most part I have been fantastic after receiving my Medtronic Revo pacemaker. I had a syncopal episode in January of 2012 where I was unconscious for a brief period of about 30 seconds, and doctors had no idea what the reasoning for my episode was. Several tests and doctors later, I had an EP study with subsequent ablation performed for SVT which helped with a lot of the palpitations I was feeling at the time. As time went on though I continued to have random drops in my pulse rate, dipping as low as 32bpm. Now, I'm only 28 years old and had considered myself to be in the very best of shape, so I would have never thought in my wildest dreams that I would be on the receiving end of a pacemaker.

Skipping forward a bit, I had my pacemaker implanted in March of 2013 and have had no problems since. Yesterday while picking up a large storage tub filled with clothes with the side resting against my chest, and when I went to set the tub down it rubbed against my body and my pacemaker stood up inside the pocket and caused me a bit of pain. After a few seconds I reached up to feel the pacemaker site and it ended up 'flipping over' inside of my chest. This makes me quite nervous, because after extensive googling I have discovered this Twiddler's syndrome and found out that leads can be dislodged and require a secondary surgery to fix the pacemaker back in it's original spot with stronger sutures.

My left chest muscle is still feeling kind of sore from the experience, but I'm left wondering if it's anything I should be concerned about or if it's all in my head. Has anybody had any experience with this kind of situation?

8 Comments

Hmmmm..........

by Tattoo Man - 2013-05-18 03:05:16


....................I have experienced PM migration with, ultimately a box revision.

My Surgeon told me that he would 'Suture in' the new box and this has been a total success...

So..why dont they Suture In the boxes as a matter of normal procedure.

PM box Twiddling seems to be a not uncommom experience..again..why not Suture In all boxes ??

If it was up to me I would use a Brown Wallplug and a 1 inch number 8 screw + a bit of 'No Nails' glue...now That would keep the sucker in place.

Tattoo Man

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How come a guy, born years after the 2nd WW, finds tears in his eyes,..all those years after..??
This is for RAY..a Spitfire pilot who lives but 4 miles from where I write right now....a true Gentleman.

Ray.. is Ray Smith..check out his book

They should suture !

by IAN MC - 2013-05-18 03:05:54

During my PM implant , the doc showed me the lump of titanium that I was about to acquire, He showed me the tiny suture hole in the case and told me when he was feeding a fine needle through the hole to stitch the PM in place.

From what I read on here , I often wonder if some Drs forget this fairly important part of the procedure,

Ian

flipper also

by samopat - 2013-05-18 04:05:12

I also had a problem with my pacemaker flipping up, I asked my Dr, about how it was standing up under my skin I wanted to know if it would be alright or would it cause me problems, the answer I was given was that they could put pacemaker under a muscle but were afraid of infection, so I told them that if they thought it was o.k. I would try to live with it, to make a long story short, 2 weeks ago the a lead moved upward was pressing against my heart on the right side and each time it kicked in I was getting shocked on thr right side of my ribs, very painful!! I had to be sent back to hospital where they changed out both leads l would check with your DR. just to be safe
hppe you do alright.

samopat


Are you otherwise feeling OK?

by SaraTB - 2013-05-18 07:05:23

If you're feeling OK, apart from soreness in that spot, then it seems unlikely anything has happened to the leads. My first PM wasn't stitched in place, and many times an awkward movement would make me feel it as it moved, and it's really unpleasant.
My second PM has minute ventilation (not that I have it switched on anymore) which meant it HAS to be stitched in, so that it can sense the breathing rate. The difference in comfort has been astonishing, and would urge anyone to insist - INSIST - on having the thing stitched down. I don't think doctors realise just what a quality of life difference it makes, opting for a faster procedure - maybe we need to be telling them that, more often?
When this one is ready for replacement, I plan on making a huge fuss to ensure proper stitching again.

Twiddler, NO ???

by donb - 2013-05-18 08:05:03

Hi, Why are we always accused of twiddling when our pacemaker decides to go south on us?? After 21 years & 5 pacemakers, my last 3 replacements have gone traveling. My last replacement just decided to walk since I had it replaced this past November 26th.
So yesterday I took a trip to Detroit Harper hospital & am getting ready for another revision. Unfortunately they found my atrial lead not funtioning while doing an interogation. As my right chest implant with new leads was done 3 years ago, they're thinking either the lead is bad or connection to my heart wall is causing no sensing. Anyhow, as of now they think lead removal will probably be in order.
As I'm a tough skinny person 81 years old and very active I have been able to always do bull work, lifting, reaching, pulling as I was told my PM's were sutured which really turned out to be "sales talk". Hopefully #6 will be properly anchored as I don't plan on being an invalid from being inactive. I know I've posted over the years as being very happy with my under muscle implant as I was promised the last 2 times. Guess I'll have to "tough it" as Electric Frank did with each procedure being fully awake. I did have one trip where I ran out of happy juice & rolled my eyes back telling the anesthesist "you didn't do you job".Anyone have ideas about how much bribe $$$ it takes to do the job right??

Hi There !

by sue uk - 2013-05-18 12:05:51

l was "accused of twiddling" a few mths after l had my PM, and no. l definately did NOT twiddle !!!
My PM just decided to move for some reason & since then it stands on end when l am in certain positions, l have got used to it but sometimes it gets a bit sore.
But getting back to your question l think its pretty rare for the leads to get dislodged but my cardiologist did send me for a precautionary x-ray just to be sure maybe just to be on the safe side yours will do the same?
Good luck :-)
Sue X

Yup, Food works !!

by donb - 2013-05-19 11:05:14

Got a call from my Cardic Nurse (wife) while she worked the floor asking me to throw together a nice chocolate pan cake & bring it over while still warm. Living only 3 minutes from our hospital I obliged, even put a nice decorative frosting on it also. Wow, what a response I got, I didn't even think it was a bribe. Well, most of the staff knew me after wife working with them for 25 years.
DonB

Thanks for the response everyone!

by bmurphr1 - 2013-05-19 12:05:40

I do appreciate everyone's kind responses regarding this situation. I watched a few YouTube videos on pacemaker implant surgeries and I can see in some of them that the PM is sutured in place but after doing a bit of reading found out that a lot of times the pacemaker is only sutured in place with an absorbable suture. I definitely know better not to hold any kind of objects like that against my chest again, but I'm surprised I was not informed that this could actually happen. At this point I can actually feel the lead laying on top of the pacemaker (which of course we all know is not supposed to happen), but I refuse to try to maneuver it myself since I could cause more damage than what has already been done.

Sounds like I might consider just going to the local urgent care center since they have the ability to perform chest X-rays and see what is really going on. I'm hesitant to call my cardiologist with the complaint of "my pacemaker flipped over and feels out of place" without having some sort of concrete proof. I think if I can get X-rayed and confirm what I think is going on, I can then call my cardiologist's office and give him the news and have him squeeze me in for an office visit to discuss this phenomenon in explicit detail. If he wants to go back in and re-situate the pacemaker and suture it down I'll probably give him the go-ahead and let him take care of it now so I don't have to worry myself with it in the future. Put it this way...I don't really mind him having to reseat the pacemaker - it's re-attaching the leads inside my heart is the big problem in my mind.

On a brighter note, I burned off over 1000 calories on the elliptical machine at the gym this morning over the span of 1 hour so either I'm healthy enough to be able to exercise that well or the pacemaker is still doing what it is supposed to do. I'm going to ponder over everything tonight though and possibly tomorrow before I make any phone calls or doctor's visits. I will keep everyone updated though since you were all nice enough to respond to my conundrum. Cheers.

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A pacemaker suddenly quitting is no more likely to happen than you are to be struck by lightening.