Leads Came Loose -Twiddler Syndrome

Maja1959
By Maja1959 Latest Reply 2012-09-02 00:23:46 -0500
Started 2012-02-05 18:52:30 -0600

They say my leads came loose because I played with my defib in my sleep. Making it flip, the lead retracked and wound around my device like a spool of fishing line. I am so upset they said this as was my doc. The tech told me this the doc said they see this a lot in dementia people. I said one I am 52! I am not dementia! And for two as sore as it can be you would think it would hurt and you would know it when you did it or the next day.

They say it happened the first week home after the implant. My appt was this past Wed six weeks after my implant. I am surprised they did not know till then. I am so very upset. And for all this to happen when my dad is in ICU dying we are waiting for a call any day. I can't stand they told me not to drive for seven days. I may not have seven days. Family is coming from overseas tomorrow. One day at a time.

I would like to hear from those whose leads have come loose. I hope this doesn't happen again. The first time it cost over 84000 blue cross picked up 30000 so grateful they accepted that as payment in full. Now to have to do it the second time and now it is the beginning of a new year so here go deductibles and med out of pockets. Ugh! Please say a prayer this doesn't happen again. They could not tell me how to avoid this happening again. Idk. Just sad.


22 replies

mbueno
mbueno 2012-02-16 08:49:07 -0600 Report

how is your Dad doing?

Maja1959
Maja1959 2012-02-16 09:53:49 -0600 Report

It is nice of you to ask about dad. He is off the ventilator and all the drips. He got strong enough to be taken to cath lab we found out that he needs open heart surgery two parts of his heart are blocked. They are waiting for him to get stronger. We are thinking next week? Not sure. He passed his swollow test but the family can't get over as weak as he is they just take the tray in and sit it in front of him to deal with himself. Doesn't that annoy you! Does me. I live an hour away and don't feel good myself my sister lives four hours away and dads girl friend has cancer and although she lives half hour away is too weak to get over there. Sad these nurses get paid all this money and they can't feed dad or at least open his stuff so he can get to it. This simply amazes me. I was there yesterday it wears me out to go every day.

mbueno
mbueno 2012-02-16 11:23:41 -0600 Report

I am soo glad that your Dad is doing better. It just makes you woner what are God's plans for us. Your Dad is a strong man thats why you are such a strong woman. I hope you get to feeling better. My little girl is finnaly getting over her lung problems that she has had since november. she has being doing well since the middle of January. Yes!!! Take care. I will keep you in my prayers.

Maja1959
Maja1959 2012-02-16 13:08:55 -0600 Report

Yes better but not out of the woods yet. He has to get well enough for open heart and go through that. I don't know about a strong woman I am tired and weary. I just keep praying that things get better for everyone. Thanks for your prayers. I hope that your little girl continues to feel better.

arkansasurviver
arkansasurviver 2012-02-15 18:30:53 -0600 Report

Okay I don't get it. I have read the articles, but how is she twisting it? Is it from a certain movement she is making? Please explain. Thanks

Maja1959
Maja1959 2012-02-16 04:24:01 -0600 Report

Don't worry arkansas I was a bit weirded out when they told me this. I thought and you went to medical school for this? They told me that I actually twisted it like a yo yo with my hand. Can you imagine? They sewed it in a second time. It feels solid it feels heavy like someone is pinning you against the wall with their finger.

HeartHawk
HeartHawk 2012-02-15 23:07:45 -0600 Report

arkansas,

Weird as it may seem, yes, in some people, their movements, particularly while sleeping, can wreak havoc on pacemaker leads.

HH

sadi23
sadi23 2012-09-01 00:59:06 -0500 Report

Mine was to do with my oxygen tubes, I had a sleep study done and they found I do not have sleep Apnea, but my heart will beat very fast at times and even stop, while sleeping… I have tachycardia sense childhood, & COPD sense 2009 and now congestive heart failure ( late stage?) So they gave me a sleep study. The Doc's said my oxygen level averaged with oxygen ( avg. when it was lowered) I think. But it was around 82% my Pulmonary Doc was quite concerned, she said make sure and where my oxygen 24/7 as I was told when I received it. That was the first thing I saw was that I didn't stir at night as much, She said there is significant de-saturation during the study. as I now know it was my breathing stopping. I sleep better…She is moving up my appt from two weeks from now, as she wanted to see how much fluid was back since they removed it, through my back with a chest tube. blood color and about a half gal.and she wants to move up my appt. to begin to learn how to use and receive the incentive spirmeter and the acapella device, sooner as well, so I don't know, any advice, let me know??? And for the tube twisting, mine was for oxygen tubing, but this might help:) Some thing you can try if it is still happening, is that the doc told me to use paper tape and tape it in place…boy I feel dumb haha but it helped and then I was able to not use the tape any more, as it prevented me from doing what ever i was doing, and I just stopped…try it:) good luck Teri said 23

Maja1959
Maja1959 2012-02-07 11:49:07 -0600 Report

What I can't get over about this twiddler syndrome if I did play with my device in my sleep. I would have thought it would really hurt and wake me up or be so sore the next day. I can't believe this came loose the first week and I did not know it till my six week visit. Very upset…sorry.

sadi23
sadi23 2012-09-01 01:29:26 -0500 Report

I just thought mittens:) or taping it with paper tape, just an idea:) good luck

Maja1959
Maja1959 2012-09-01 09:26:43 -0500 Report

Wow you have a lot going on. I had a sleep study too he said it was so mild he would not give me a machine that was the second guy. I am tired today just got up it is 930am. Surprised I slept that long. My son just started his senior year last week. We have a new bus driver and between him and the bus driver he missed the bus twice. Thurs he went down at a quarter till and made the bus! Yes! Well I am off to make some french toast. I am hungry for something good and a nice cup of hot tea. Something I don't do all the time cause I have to watch my diabetes. Every now and then. I just found out this week I have cataracts. Doc wants to see me Nov 19 wish it could be sooner as blurry as I can get. idk. Happy Labor Day!

sadi23
sadi23 2012-09-01 14:53:37 -0500 Report

Maja1959, good-day my lady:) I was born in 1959:)

I also have diabetes & Cataracts, I have only been diagnosed with diabetes for, well it will be a year this month. wow time goes fast. I have lowered my diabetes, from 9.7 to 7.9 weird, its the same number but reversed haha but it needs to go down more. I have only done diet, as I have had all these other medical issues that get in the way of other appointments, do you ever have that happen, go in for your diabetes, but they realize your heart is going at 185 oxygen level 86, I am telling the doc that I can hardly breath and the pain was UN-bareable. So they have to jump on that and my diabetes gets moved a head, which is the right thing to do, but many of my medical issues don't get the care they need some times…

My son has some developmental disabilities and mental health illness, you wouldn't know it looking or talking to him, but he can only read at a 1st or 2nd grade or write. he has learned all the words he needs for his phone internet etc. He is a good boy, he is 23 but more like a 17 or 18 years old, in life, all his friends are younger…

I love him to death, he helps me a lot, but not my daughter, she is 32 and she just says a lot of nice things but never does them, or calls…

Well great talking to ya. I hope you have a nice day, and enjoy yourself:) Teri (sadi23)

HeartHawk
HeartHawk 2012-09-02 00:12:04 -0500 Report

sadi/maja,

I had the sleep study too because of chronic fatigue but they found nothing. Get that diabetes under control as it is a major factor in many of the other health challenges you face (either of you on metformin?)

I hear ya on the daughter thing. Heh, it would be nice if they just returned phone calls, lol!

HH

mbueno
mbueno 2012-02-06 09:51:33 -0600 Report

Hope that you get to feel better. I know it must be hard to deal with all of this right now when your Dad is sick on ICU. I will be praying for you and your family. Just keep in mind that God does not give us things that we cannot handle. You are a strong woman. You have been through a lot and you will get through this. You will see. Take care. Will keep you in my prayers.

Maja1959
Maja1959 2012-02-06 11:50:10 -0600 Report

thanks for the prayers i called to check on him this morning and was told the social worker would be calling the family to set up a meeting with the doc. he is on the vetillator it is time to make the decision to let him go home to god. not a good week.
thanks again.

HeartHawk
HeartHawk 2012-02-06 00:07:04 -0600 Report

Maja,

It's a funny name with some not so funny consequences fortuantely most of them are not severe but expensive. I have posted two articles on Twiddler's Syndrome for you to look at.

http://www.heartconnect.com/news-articles/505-twiddling-to-the-extreme-development-of-twiddler-syndrome-in-an-implanted-cardioverter-defibrillator

http://www.heartconnect.com/news-articles/504-twiddler-s-syndrome

One solution is to put the pacemaker in a pouch made of Dacron. Dacron (polyethylene terephthalate) will mesh with surrounding tissues to hold the pacemaker in place and prevent it from rotating.

HH

Maja1959
Maja1959 2012-02-06 04:09:33 -0600 Report

Hmmm…thanks I think. Been up and down all night. I have carpal tunnel on top of all this heart stuff. Oh man my fingers really bothered me more so on my left hand I had to sit up and rub them till they settled. I have done all the physical therapy they can do for it no relief. Can't have surgery for it I am to high risk with my heart. Going to have to ask about if they do it under a local. Once I am awake I am ok. I had no idea I was even touching this thing. It scares me to touch it during the day. It really upset they accused me of such a thing. Right now it is sewn in so good it feels like someone is pushing their finger in my shoulder. I don't like it it is uncomfortable. I know I need the device. I am sorry wish I never got it. Maybe I will change my mind latter. I should have asked doc for something to sleep. Very uncomfortable. I asked for things to do to prevent this and nobody had answers. You would thought they would have done that special pocket on their own. Idk. I will show your posts to my doc. I am very upset.

HeartHawk
HeartHawk 2012-02-08 23:08:28 -0600 Report

Maja,

Yeah, stuff like that takes some getting used to! But, it is probably for the best. However, don't be afraid to talk to your doc about quality of life issues. You should not have to live with any more discomfort than is absolutely necessary!

HH