Beantown or bust

Well, folks, it looks like we’re going to be going to Boston after all. I got a call from the hand surgeon at Children’s Hospital Boston yesterday. It was so nice to talk to someone who seems to know what they’re talking about and yet, doesn’t act like they know everything. Basically, he told me that NO ONE has seen enough of these cases to be able to say they know what the right answer is. The reality is there are several different approaches that can be taken and he said that my opinion as the mother will determine to a large extent what approach he’ll end up taking. We seemed to be right on the same page in terms of what we’d like to see happen in the first surgery (separate the index and middle finger, drill the growth plates to stop the large fingers from getting any longer, and then debulk as much as we can). After that, he said he’d like to focus his attentions on making Liam’s thumb more functional before we even talk about the index finger. I like this plan because it means that we can make a decision about amputation AFTER we know what the nerve structure and so forth looks like inside of Liam’s hand. It just seems ridiculous to decide to amputate without knowing for certain what we are dealing with. This surgeon confirmed my feelings even more by telling me that apparently there are two types of macrodactyly. In both cases, fatty tissue builds up causing decreased function in the affected digits. BUT, sometimes nerves are affected (and therefore enlarged) and sometimes they are NOT. I didn’t know that, but now that I do, I can’t believe that anyone would recommend amputation before knowing what type we’re dealing with. If the nerves aren’t enlarged, de-bulking the fatty tissue will be much less complicated, so that’s what I’m hoping for.

At this point, I need to gather up Liam’s x-rays and other medical information to send out to him. After he’s had a chance to review Liam’s case thoroughly, we’ll decide about a meeting. I’m not even sure at this point if we’d just schedule the surgery, or if we’d have to go out there for a consult in person. I’ll keep you updated.

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7 Responses to Beantown or bust

  1. Shannon Fox says:

    Hooray for options! I am so glad you found someone who is willing to take a really good look at Liam’s case! Hooray for docs that don’t think they are God’s gift to the world and actually care about your opinion!

  2. Kristi says:

    Okay, seriously, you are a really good mom. I don’t think most parents would just get one opinion about such a thing, but regardless, I applaud you for taking the initiative w/ your kid and doing everything you possibly can for him. Remember this one the days you’re screaming at him 🙂 You really are good parents!

  3. Karin says:

    yea! for doctors who actually listen to parents…(what a novel concept) We haven’t had to go out of the state for treatment…yet. But I’m sure that at some point it will be that. We are also lucky to have some specialists that listen and trust our judgment as it applies to *our* daughter. We also have come that are not that helpful.

    Fighting for your child is hard. But nobody can or will do it better than you. You love him. He is beautiful! You are his best advocate…always. 🙂

    Good Luck with the recommendations and upcoming surgery.

  4. Shauna (the other one) says:

    This makes me happy. 🙂

  5. Bill says:

    I’m not feeling updated

  6. Jodi says:

    Hi Shauna,
    I found your blog through the post you made on the limb differences website. I’m “mamabear”, right above your entry. I just wanted to let you know that my son just had surgery this past Tuesday. We have an excellent surgeon in the Chicago area, and also got a second opinion from Children’s Hospital in Boston before we went ahead with our son’s surgery. The surgeon in Boston was great to talk to on the phone and only had great things to say about the surgeon we have in Chicago. Nonetheless, our surgery went just fine. They removed a nerve that ran the entire length of his index finger, debulked it, removed the growth plate and restructured the nail bed. My son was groggy the day of the surgery and woke up feeling just fine the next. We never even had to give him any pain medication! Right now he finger is all bandaged – I’m anxious to see what it looks like.

    If you’d like to chat, shoot me an e-mail – you aren’t the only one out there trying to figure out what to do!

  7. Rick and jenn O'Hearn says:

    Hi I just found this website today. Our son Brady had almost the exact same type of macrodactyly as your son Liam except Brady’s was on his left foot. He had hid two middle toes amputated when he was nine months old. He is now eight years old and doing great. We have to buy him two pairs of shoes when he needs new ones because he has a difference of two sizes and he also needs a lift on his right shoe because the bulkiness of his left foot and a slight leg lenghth difference. He is now starting to become aware that he is “different” than the other kids and this is something we knew would happen. He doesn’t believe us when we tell him there is other kids like him in the world with this condition and I can sympothize with him. We just do our best and try to instill as much confidence in him as we can. WE would love to talk with other parents about this so please drop us a line at: jenandrick@hfx.eastlink.ca

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