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Apr 20

Second Surgery Success!

Colin’s final surgery to implant the battery packs was a success. His surgery lasted approximately 2 hours. This surgery was a little more painful then the last as they had to tunnel in the wires from his brain stimulators, to behind his ears, neck, chest, and finally down to the battery packs which has caused collective pain in all three areas. He has 5 incisions as a result the large across the top of his head, two incisions behind the ears (one behind each ear), and two across the upper part of his chest (one for each box). As you can see in the photos he has a new head wrap and patches where the batteries were placed, that he has to wear for a week.

We are looking forward to the programming process to begin and to see the initial relief of symptoms. They turned on the stimulators immediately after surgery but at the lowest voltage setting (0.5V) to begin brain acclimation, there is no relief of symptoms at this point. It won’t be until 4/26 when all bandages, staples and stitches are removed that he will get his first programming and hopefully see some improvement, but not the likely case as it usually it takes 1 – 2 months to see noticeable improvement with Dystonia. More updates to follow!

8 comments

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  1. Matt, Jackie and family

    Hi Kevin, Angela, and Colin!! So happy so see Colin’s smiling face!!! You all have been in our thoughts and we can’t wait for you to come home. Sending good karma your way that all goes perfect with the acclimation and response to his new transmitters!!

  2. Garett Semeit

    Love the smile Colin! You are such an amazing little guy. So glad to hear that the 2nd surgery was a success. Garett cant wait till you come back to class. Sending lots of hugs and happy thoughts. Love Garett and family!!

  3. Martha Murphy

    Sorry to hear that this surgery was a little more painful but happy that it was a success! Colin is very brave to endure all of this but, hopefully, the eventual benefits will all be worth it! I’ll continue to keep all of you in my prayers and will watch for more updates. ~ Martha

  4. susi

    Thinking of you, Colin, and all you’re going through–hoping for a great outcome though your journey to get there is tough.
    Susi (A dystonia patient too who cares about you and all of us with this frustrating diagnosis. You may feel alone in these but there are lots of us out here thinking about you and sending you positive energy)

  5. Denise Moe (Aaron's mom)

    yeah Colin!! What a trooper you are. I am sorry to hear that it hurts right now, but you did a fantastic job!! You are in our prayers. We hope this week goes quickly and you can get these bandages off soon. Hope the 26th brings good news.

  6. Aunt Tazeem, Annalen & Zachary

    Counting the days until you all come home. Hang in there…you’re almost done. Loads and loads of love

  7. Fairy Princess

    My dear Collin what a Brave Young Man you are! I especially enjoy seeing the smile on your face. I will be eager to see your smile without your bandages! You take care, and I will be flying over head thinking of you!
    The Fairy Princess.

  8. Leone Siciliani

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