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  • ICD places and puberty

    [ICD places and puberty]

    Author: Terri (---.dsl.chcgil.ameritech.net)

    Date: 08-29-02 12:05

    Hi

    My 12-year-old daughter has had hypertrophic cardiomyopathy since birth with severe septal thickening, but no symptoms. Over the last year, she has started having symptoms and, now, after being seen by specialists in Minneapolis and here in Chicago, we've been told she should get an ICD with the pacemaking function included.

    This board wasn't around when our daughter was diagnosed, but I've been reading it lately as this new issue has arisen for us and I appreciate the way in which information is shared. We have serveral questions. And thanks in advance.

    1. What are the relative merits of having the surgery done in Minneapolis by the man who supposedly has done more than anyone else, versus having it done in Chicago. We have many good hospitals, here, but I've been told by some that Minneapolis is the place to go. For one, travel would place an added burden on my daughter (not to mention the cost) and we have concerns if there are issues after the surgery that it might be better to have them addressed by the people who did the surgery? That would weigh in favor of Chicago.

    2. Any comments from anyone with a girl in the midst of pubery undergoing the implantation would be helpful. Is under the arm better than on the chest. Does it cause problems wearing bras and bathing suits. Are school backpacks a problem, etc. etc. etc. All these things and thousands more are running through our heads.

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    [Re: ICD places and puberty]

    Author: Sarah B.-Board Moderator (---.client.attbi.com)

    Date: 08-29-02 12:53

    Dear Terri,

    I live in Oak Park and am very familiar with the "best" doctors here in Chi-town.

    While the doctors here are capable, I wouldn't want anyone but the best to install an ICD/pacemaker. While it is a straightforward procedure, there are the rare cases of people having tricky hearts or complications and god forbid she is not with the best if that happened.

    A portion of your travel expenses are tax deductible (including meals and hotel) so keep every receipt. I know that she would love to have her friends come by and visit, too, but thestatus.com has a great setup where people can get updates and send messages, etc. Also, these clinics are set up for out-of-town people and have lots of resources for you. Northwest Airlines should have a medical discount rate for you, too.

    My ex-husband always said "who do you want treating you? Someone who says 'oooh, I never get to do this! how fun!' or the doctor who says 'I do this every day, all day.' " Me, I'm going to take the guy who has seen all the permutations, all the complications, all the problems and they don't phase him, he just fixes them.

    Most of the people who see the out-of-town specialists for surgerys and procedures will have an annual (or biannual) check up with the outoftowner and see a local cardiologist for the in-between times. A good cardiologist will be happy to take direction from a world-renowned HCM specialist.

    Also, please visit zaplife.org for the nitty gritty on day to day with an ICD. They are getting smaller and smaller these days. I would bring up the backpack issue with the doctors, though, since she has so much school ahead of her and she should be wearing her backpack over both shoulders.

    I hope this helps,

    Sarah

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    [Re: ICD places and puberty]

    Author: Lisa Salberg (208.47.172.---)

    Date: 08-29-02 13:58

    I have not had time to read you post completely...just wanted to let you know I will comment on it more very soon. Best wishes to you and your daughter!

    Lisa

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    [Re: ICD places and puberty]

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

    Date: 08-29-02 18:51

    My nephew was also told he needs an ICD and also resides in Chicago - who is your pediatric cardiologist and what hospital are you at?

    Kathleen

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    [Re: ICD places and puberty]

    Author: Terri (---.dsl.chcgil.ameritech.net)

    Date: 08-30-02 08:33

    Kathleen---

    We're at Children's Memorial and have seen many of the doctors there over the years.

    Terri

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    [Re: ICD places and puberty]

    Author: Erin (12.10.17.---)

    Date: 08-30-02 16:22

    As for the ICD (and myectomy)- I got mine when I was pretty young and still wanted to look good in a swimsuit. The bra was a little uncomfortable for a while, but this will go away relatively quick. I'd say keep it in the chest. She'll get used to it and it won't be as awkward as under the arm. Plus, there are plenty of swimsuits that cover it pretty well! Especially, since they are so small these days (I still have the bigger version)!

    Anyway, that's my two cents.

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    [Re: ICD places and puberty]

    Author: Linda (---.wmnsmd.adelphia.net)

    Date: 08-30-02 18:35

    My son was 12 when he got his first ICD. We were fortunate enough to be able to have a set of books at home and one to use in school. The school system was most helpful. Please keep the teachers in the loop, they only want the best for your child. Best buddies are great for being helpful also, but they have to know you need some help to carry things. Best wishes, we'll keep you in our prayers. Linda

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    [Re: ICD places and puberty]

    Author: Terri (---.dsl.chcgil.ameritech.net)

    Date: 08-31-02 13:59

    Thanks Lisa

    I look forward to hearing from you.

    Terri

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

    [Re: ICD places and puberty]

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

    Date: 08-31-02 14:23

    Terry, my 14 year old son received an icd implant last sept. It was done here in Las Vegas, fortunately by someone experienced. You need to look at how many your dr. has put in. as experience does count. He has had no problems since then and he is extremely active. He had his placed under the skin in the upper left chest. I think the under the skin decision was good as at this age since they are self concious and I fell like it is more secure there especially for active boys. He doesn't have any problems with backpacks or seatbelts. when they start to drive though the seat belt may be a bother since it then is on the left side. I do know one other girl age 16 and if you like I could probably get her e-mail.

    Good luck,

    Nancy

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    [Re: ICD places and puberty]

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

    Date: 08-31-02 14:50

    I am back - OK.. here is my take..in no particular order.

    Backbacks can be a bit of a problem in the first few months after implant, regardless of if the device is under the arm/in chest.

    I have had 3 devices - 1 in the chest - 2 under the arm.

    I think the implant in the chest was the least painful upfront...but it was more visable than under the arm.

    My 1st device under my arm hurt the most...yet the scar is hidden and it shows far less than the other device (and it was much larger than #1)

    My 2nd device under the arm was no big deal implant wise..it did not hurt much at all ( I think I took 1-2 pain killers in the hospital and that was it.)

    Appearance I like my under the arm device better - - the catch the surgery is more complicated and it hurts more for the 1st week.

    Where to go - -I am very big on sticking with the best. While Chicago has many great docs, I would go to Minneapolis for the simple fact they see more HCM than your local guys do. Those with HCM can be a bit different than others as our B/P are very sensitive, veins can be small and we may require a higher voltage for defib than one may expect.

    Your daughter must be in on the choice of where to go and where to implant. I would be happy to speak to either of you if you wish to call the HCMA office.

    Best to all!

    Lisa

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

    [Re: ICD places and puberty]

    Author: Ada (---.netcarrier.net)

    Date: 08-31-02 17:23

    Hi, Terri,

    I also have several good hospitals in my area (Philadelphia, PA). I had my original ICD implant, a lead extraction and battery replacement, and two EP studies done locally. I had my myectomy done at St. Mary's Hospital at the Mayo Clinic. Of all of my procedures, the myectomy was the most comfortable--even though it was major surgery with a long recovery. I attribute that to the excellent care I got at Saint Mary's. As Lisa said, they see more patients with HCM. Everyone on staff--doctor, nurses, and technicians were knowledgeable about this disease and never once gave me blank looks when I described my symptoms or asked difficult questions. Also, during my hospital stay, the nurses were always available and checked on me very regularly. That never happened at any other hopital. I think I'm spoiled now and, when I need surgery in the future, will probably choose to go back to Mayo or to another HCM specialist. The incoveniences of travel are totally worth the peace of mind.

    As far as life with the ICD, I was twenty when I had mine implanted--not still going through puberty but still very self-conscious about my body. Mine is in my chest. I didn't have any trouble wearing a bra. For about a week or two, I had trouble raising my left arm, so that made shaving and putting on deoderant difficult (I ended up going with a spray). It was about a month before I could carry anything with my left arm or shoulder. My scar is noticeable because of the way my body scars. I don't think this is true of everyone. There is slight bulge in the skin where the device is that cannot be seen in most clothing. With bathing suites and wide-cut or low-cut tops, the scar is visible, but the device not as much so. I am probably most aware of the bulge. I find that other people don't notice it unless they know to look for it. And, as I became more confident, I cared less if it was noticeable or not.

    From what I went through and what I've read about other people on the message board, the recovery from ICD surgery goes fairly quickly. Depending on how comfortable your daughter is with herself, it may take longer to become comfortable with having an ICD. Remembering how difficult puberty was...I'd say it's very important to send the message to your daughter that having an ICD doesn't make her any less beautiful.

    Best wishes,

    Ada

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    [Re: ICD places and puberty]

    Author: Not Released (---.dsl.chcgil.ameritech.net)

    Date: 09-17-02 17:19

    Since i am a young girl i would rather have it under my arm despite the pain you have described. If the implant never gets taken out i would rather endure the pain and have a much smaller bulge. P.S. does any one know how big (in acutal measurements) the bulge is...?

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    [Re: ICD places and puberty]

    Author: Matt (---.disney.com)

    Date: 09-18-02 00:06

    The documentation says that my new Medtronic ICD is about the size of a pager with a volume of 39cc. My opinion is it's more like a Zippo lighter.

    Matt

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    [Re: ICD places and puberty]

    Author: Sarah B.-Board Moderator (---.client.attbi.com)

    Date: 09-18-02 00:48

    However, not all of the zippo will be sticking out of you ---about half I think (of the depth of it).

    good luck,

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

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