ICD has moved 6 inches?

ok-My Deanna-16 years old-tested positive for Rare ARVD-got an ICD on Sept. 21st. A week later a recheck at the hospital-the Dr. told us that the ICD was in place---and pointed over the Left Breast area. 7 days later at the ICD monitoring clinic-My daughter was complaining about the incision area being so "Very Sore"--under the arm pit. The Doctor there-inspected the area under the armpit---felt the ICD and said "Why in the world would they put it there?"--Xrays proved that the ICD had moved to the incision area---but is still attatched to the Heart?!?!
I am So Very Confused! Is this normal? Her arm is still swollen-Red-Tender to the Eye--She is taking pain medication just to function daily---I am the only one that seems concerned-The Doctors seem to NOT Worry about it--but This Can Not Be Normal--Somebody Please advise me on this.. Thank You and God BLess!!

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PrayingMOM,
As you know, it is very good that Deanna got her ICD: congratulations. Mine moved too, from under the pectoral to top of the pectoral via the armpit. I never got a straight answer when I asked about that move at the time. I guess electrophysiologists are not thoracic surgeons.... I am absolutely not an expert, but I would be concerned about two things: (1) are the ICD and leads functioning correctly - that can be (and probably was) checked during last visit. They can check if the leads are settling correctly. It does not hurt to ask the technician or doctor as many questions as you can think of, and don't quit until you are satisfied with the answers (I am still learning how to do this myself.) (2) is there any infection: this is very important. If you are worried - get it checked again, it is well worth it. Other than that, the ICD will eventually settle down and create a "pocket."
If you think you might need more support, you might want to join a private support group for ARVDer's by checking the link on the upper left of the page: www.arvd-arvc-info.com. All you need is e-mail. If you are having difficulty requesting access send me a PM.

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yes i agree with thierry ask ask ask ... i had icd fitted march , 5 weeks later the lead had moved , had lead pushed back in again , a month later collapsed at home, they thought was faulty lead so went back under the knife to have one of the leads changed then a couple of months later i felt unwell, had to go back under the knife yet again , they found the lead was broken so decided to change lead and box . the results from first lead change showed the lead was not the problem so now they are checking the box.... had four ops since march because of this machinery so please ask all the questions you can... sending my love.and hope all goes well x

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Dear Prayingmom,

My story is similar to Mandy's - I had four surgeries in six months due to the movement of the ICD 'can' or box. However, as others have also commented, lead movement is much more of a concern than can movement. In my case the leads moved and perforated the heart - twice - very scary. The leads seem very secure now, but I still have trouble with the can which has also moved about 6 in since the last surgery (last November). However, every time that they go in to reposition the can, there is an increased risk of infection - which is very serious with an ICD - so unless the can is in a position that is causing pain and immobility they prefer not to move it. I hope your daughter's situation is resolved quickly and safely and that she feels better soon!
elaine

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Thank's To ALL!!! Atleast Now I know that this is somewhat normal---Although--It is Terrible that this is a Normal situation. Deanna is doing "GOOD" considering--Noone can finger point why she is still so tired-Just don't understand when they say--"she has an "old lady" schedule--because she is in bed at 8pm everynite-totally exhausted from Her day. And Yes---THat is exactly how they compare Her daily schedule--"Really Hope Nobody takes offense" but that is what they said about Her sleeping habits--I thought It Kindof RUDE! But Swallowed my breath not to embarrass Deanna. I get more answered questions from the genetic councelor--She is GREAT! As a Mother--All I want is for Deanna to Live a Normal Teenage Life--She is so tired of Surgeries and hospitals--She has college plans--Dreams--I just want Them to come true for Her..
The Doctor that took over care-told me that He only has 10 patients Deanna's age-with Her Problem--I really am also confused over that comment-
I will continue to monitor Her ICD--She is starting to get aggravated with Me-asking so many questions--But Oh Well---Thats what Mom's of teenagers do--and thats how teenagers act--I guess!
Thank's to all the feedback--It really does Help!
God Bless ALL!

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