Twiddlers Syndrome

I have been having trouble with my pm bulging when I lie on my side in bed at night, it sticks out and feels weird but slips back into position when I lie on my back, this happens several times at night. I had thought it might be because I have lost about 4kgs and gone down a bra size so weight has come off in that area, also have had a cardioversion about 6mths ago, but after having a chest xray to check position of pm it shows pm has changed position and Dr has sent urgent referral thru to cardiology department. They are suggesting twiddlers syndrome. I have had pm three and a half years and have never been aware of twiddling with it, in fact I almost never thought about it until this starting happening. I am sure Dr will never believe that it wasn't my doing. I would be interested to hear from others this may have happened to.

Regards Jane

9 Comments

Not twiddlers

by Grateful Heart - 2015-02-03 01:02:35


Since you are not twiddling with it. If your Doctor is worth his salt, he will believe you.

My CRT-D sticks out too after a lead revision. It hurts to lie on my left side....can't do it for more than a minute or two, even with a pillow. My device squeezes and pinches my skin on that side. I flip between my back and right side all night long so constantly waking up but I guess I'm used to it now.

I don't even mention it to my Doctors anymore. Like Tracey said, I am just going to wait until replacement time.

Good luck with your decision.

Grateful Heart

Thanks for your replys

by jane32 - 2015-02-03 02:02:47

I am quite happy to leave it as it is, I know the ventricular lead is using extra power and I am having check ups 6 monthly, probably the sentence in the referral that got my back up was " Do you think it needs surgical intervention to stop the twiddler from pulling both leads out" GRRR. I have got other things happening in my life so am not going to waste any energy on what they think. As some of you know I lost my darling husband John 11 weeks ago, after nursing him all year, and a month before that our 13 year old dachshund died so there has been grief and huge changes in my life, I have just bought a puppy, (must be crazy) I pick her up on Saturday so am looking forward to having this little girl Meg in my life.

Cheers Jane

crazy is good :)

by Tracey_E - 2015-02-03 03:02:30

My condolences on your losses. I think a puppy is a good thing! Nothing wrong with giving yourself a distraction that is a source of laughter and joy.

I would totally say something to the dr about the comment in the file!!! That's completely unprofessional.

Twiddling, NOT

by Alma Annie - 2015-02-03 05:02:24

I was accused of the same thing. The way I lie in bed, sort of left side/stomach, often causes pm to flip up on end. I had a mammogram 2 years ago, the new digital one. That pushed it over and the leads have moved and now a bit uncomfortable. The next thing that happened, due to the leads having shifted was I caught them under my towel when drying after a shower. I am also thin, so it sticks out a lot. EP first of all raised his eyebrows and twiddling was mentioned. So I explained what happened. He just shrugged his shoulders, said it was still working fine and that next time he would put it under a muscle.
I am so sorry about your husband. I wonder how you are coping now. My daughter will soon lose hers, he has terminal melanoma age 35 and has been give weeks to live. They told the children 9, 7 and 4 last week.
You are not crazy to have bought a new puppy. I can see that Meg will be utterly spoilt and totally loved. Good on you. Perhaps you can keep us up to date with her antics!
Alma Annie

not twiddlers

by Tracey_E - 2015-02-03 08:02:39

They can call it whatever they want, but if you haven't been messing with it, it's not twiddlers syndrome! Losing weight could most definitely cause it to shift. Aging can cause them to shift! Mine is submammary, got the first one when I was 27 and underweight. Add 20 years, two pregnancies, 2 babies breastfed, 4 battery replacements, and weight gain... mine is about 3" lower than it originally was.

Just the fact that it moved is not a big deal. Even sliding around isn't necessarily a problem as long as your leads have some slack (it's normal to have extra lead in there). If the shifting bothers you, you could have it repositioned. If it's more annoying than painful, I'd probably wait until it needs replaced and have it all done at once.

Alma Annie

by jane32 - 2015-02-04 03:02:45

So sorry to hear about your son in law, I feel for you all, it must be heart breaking, especially one so young. I will be thinking of you, keep strong.

Love and hugs

Jane

re positioning

by vattens1 - 2015-02-04 11:02:17

I just had mine re positioned 3 weeks ago. The pocket must have stretched and the pm was sticking out. Dr thought it May come thru skin. Anyway got it moved took a lot longer than when they put it in. Turns out the leafs has twisted so it was a good thing to get it sorted. I sleep on left also and don't twiddle. It is now under the muscle on chest wall where it doesn't move. I hope this helps

Meg

by Alma Annie - 2015-02-04 11:02:55

Thank you Jane for your comments. Just one thing about Meg. I saw an item on TV last night about owners having their dogs in/on bed with them. Apparently dogs wake much more frequently than us homo sapiens, and people have wondered why they have been so tired in the morning, as they have not realised that they have partly woken too. Just a thought.
Love. Alma Annie

re-positioning

by Alma Annie - 2015-02-05 06:02:14

My EP said he can't re- position it until battery change, about 6 years away, and yes mine sticks out. Since I am thin I have often wondered about it coming through the skin. He would have to re-position it then.
Alma Annie

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