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  • Location of ICD

    [Location of ICD]

    Author: Thumper (64.80.249.---)

    Date: 01-02-03 11:32

    Hello everyone,

    I am curious to know where the majority of us have hade their ICD located in their chest. Mine is 1/2" below my collar bone and the CONSTANT discomfort (pain) has not gone away as the doctors said it would with time; implanted 5-2-02.The first thing my doctor told my family following surgery was the difficulty he experienced in getting past my collar bone and muscle mass.

    Does everyone have their ICD located this close to collar bone?

    I am going to seek a second opinion on the location of my unit as I am certain my doctor and his partners will not admit they made a mistake.

    PLEASE advise as I cannot stand this 24/7 pain any longer.

    Happy & Healthy New Year To All !!!

    ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

    [Re: Location of ICD]

    Author: Sarah B. Board Moderator (12.144.99.---)

    Date: 01-02-03 11:45

    Dear Thumper,

    You should NOT be in pain. A second opinion is a good idea if they are pooh-poohing your symptoms.

    I suspect this is one area (no pun intended) where there is a lot of variance due to people's size and shape. Some people even have them under their arm (hurts more at first, but some like the lack of bulge up front).

    What have your doctors said about moving it?

    S

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    [Re: Location of ICD]

    Author: Thumper (64.80.249.---)

    Date: 01-02-03 11:59

    Sarah, Thanks for the quick response.

    My doctors are doing nothing about my pain saying only for me to lose weight, I am the same as when I had the ICD implanted 228 lbs.

    I guess I should call Lisa and get a list of specialists for a second opinion, I live near you, in the N/W suburbs of Chicago, Can you recomend a Dr.? I am willing to travel ANYWHERE.

    I would still like to hear from the rest of you on your ICD location in relation to your collar bone.

    ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

    [Re: Location of ICD]

    Author: Bryan (---.bos.east.verizon.net)

    Date: 01-02-03 12:07

    Just a quick question. Why did they move implantations from the abdomin to underneath the collarbone? Was it just time and studies that decided that? Or are some still implanted in the abdomin? ive had mine for a little over 9 years and its in my abdomin but it is NEVER sore. And by alot of post and by the pain my mom still has after a year, I think im glad mine is where it is.

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    [Re: Location of ICD]

    Author: Sarah B. Board Moderator (12.144.99.---)

    Date: 01-02-03 12:38

    Dear Bryan,

    They used to be so big that they couldn't go anywhere else. Now that they are smaller, they can go closer to the heart. The shorter the leads, the fewer problems you are going to have with them --ideally.

    Thumper --We are having a Chicago get together on March 29th --date and place tbd. Save the date.

    S

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    [Re: Location of ICD]

    Author: Reenie (---.snbrca.adelphia.net)

    Date: 01-02-03 13:11

    Thumper, I have to agree that you shouldn't be in constant pain. My husband's is just under the collar bone, not too sure how close without him here to look at. (He's at work while I type this.) But his is only uncomfortable when it's bumped or laid on too hard. He's not a lot smaller than you, 195-200 lb. They've never said a word about losing weight because of the ICD. Sounds like you definitely need a second opinion to me.

    Reenie

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    [Re: Location of ICD]

    Author: Sue (---.howard01.md.comcast.net)

    Date: 01-02-03 16:32

    Mine is about 1" below my collarbone. Sue

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    [Re: Location of ICD]

    Author: Lisa Salberg (---.dyn.optonline.net)

    Date: 01-02-03 16:48

    ICD's were implanted in the abdomin years ago but then moved to the upper chest...this mostly due to the lead systems and the sizes of the devices getting smaller.

    NO...you should NOT be in pain. Something is not right and you should have this looked at. There maybe something unusual about your anatomy that has caused this or something did not go well with your implant.????

    Get a 2nd opinion.

    FYI I am only aware of 1 other person with long term pain from the ICD implant.

    Something is very odd with this...get it looked at.

    Lisa

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    [Re: Location of ICD]

    Author: Thumper (---.client.attbi.com)

    Date: 01-02-03 17:15

    Lisa, I will get a second opinion right away, Have you heard of any ICD's located so close to the collar bone before?

    I will let you know the results of 2nd opinion.

    Thanks for the response.

    Anyone else have them close? let's hear from you

    ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

    [Re: Location of ICD]

    Author: Reenie (---.snbrca.adelphia.net)

    Date: 01-02-03 18:10

    Thumper,

    Well, my husband got home from work and I checked. His is about 3" away from the collar bone. Perhaps yours is too close and it's painful because of the proximity to the bone? Good luck with the second opinion. Let us know what they say.

    Reenie

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    [Re: Location of ICD]

    Author: Elizabeth (---.fuse.net)

    Date: 01-03-03 09:24

    Thumper,

    Mine is 3" below the collar bone. What kind of pain are you talking about? Mine stings alot, not constant, but daily. It's relatively new and I thought it was just healing. Let me know...

    Elizabeth

    ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

    [Re: Location of ICD]

    Author: Greg (208.187.247.---)

    Date: 01-03-03 09:33

    Mines approximately 3 inches from my collarbone - I don't experience any pain at any time with it -

    Sorry it hurts - that sucks - the days get long when you're in pain

    best of luck

    greg

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    [Re: Location of ICD]

    Author: Mary S. (---.net592.fl.sprint-hsd.net)

    Date: 01-03-03 11:03

    My ICD is about an inch from my collar bone and the only problem I have is tingling down the inside of my arm. My cardiologist said it is sitting on a nerve and will take a while to desensitize.

    Mary s.

    ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

    [Re: Location of ICD]

    Author: Julie (---.cinci.rr.com)

    Date: 01-03-03 11:15

    The top of my ICD is about 2 inches down from my collar bone.

    I have been very lucky as I have no pain and actually I don't even feel it there. At first when it was put in (1999 )there was a "heavyness" feeling but it went away and now unless I look at it or touch it I don't feel it at all.

    Julie



    ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

    [Re: Location of ICD]

    Author: karen (---.dyn.optonline.net)

    Date: 01-03-03 12:57

    Hi Thumper,

    My daughter's is about 1/2" to 1"the below collar bone. She only had it placed last week, on Christmas eve, so it's too soon to tell. She is doing very well & tells me that there is no longer pain at the site, just sore. My husband's is about 2" beneath & pain was never a problem. You shouldn't hurt like that! Hopefully 2003 will bring less pain & much happiness.

    Karen

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    [Re: Location of ICD]

    Author: Heather (65.247.157.---)

    Date: 01-04-03 06:00

    Mine is about 1" below my collarbone..... It doesn't bother me much anymore. I still feel a little tightness when I try to lift my left arm high over my head. I had mine implanted on 11-10-02, so still fairly new. I have been feeling it "pace" the last few days off and on.....This is somewhat disturbing and hopefully will go away. I didn't feel it there for a few weeks and now it's started up again. It's just a little twinge feeling. Doesn't hurt, but is uncomfortable.

    Heather

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    [Re: Location of ICD]

    Author: Kat (---.proxy.aol.com)

    Date: 01-06-03 22:05

    Hi, Thumper,

    My ICD is about 2 or 2 1/2 inches below my collarbone. It has hurt all the time since I had it in over a year ago. Of course it hurts less than at first, but it has never stopped hurting. My doctor said he has only had 2 other patients who had any long-term pain from it, and that it is probably in a bad spot where it is bothering a nerve. He offered to move it to the other side, but says he cannot guarantee it will be better, so I'm holding off for now. Unless I bump it or my cat jumps on it or I accidentally roll onto my left side it is bearable, not much worse than my arthritic knee. I don't know if this will help you except to know you are not alone, and of course I do urge you to discuss it another doctor if yours is not addressing it directly. Good luck.

    Kat
    NOTE: This is a post from the previous forum message board.

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