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My son due to have decompression surgery in August and I'm wondering if anyone can tell me what to expect when he comes back from theater? What will he be able to do and not able to do?

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  • Posted

    Hi Angela,

    i had decompression surgery in January 2014. I was astounded at how much better I felt immediately after I woke up and I went home 2 days after surgery! I'm not saying that it is easy, it's extremely painful around the wound and the neck and shoulders, but the horrendous headaches I'd suffered from had completely gone, it was such a relief. 

    How old is your son? I found the practical things difficult, cooking, making coffee or tea and housework, this is impossible for at least 6 weeks. But if your son is young & he has you to take care of him, it won't be so bad. I was told that I wasn't allowed to lift anything or carry anything or drive. I was encouraged to walk as much as I could each day.

    i hope this helps, and I wish you and your son all the best for his surgery.

    kind regards,

    Kimberlee x

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  • Posted

    It depends on the severity of the malformation. Kimberlee was lucky. In my case it was servere malformation. I was vertually unconscious for a week then came home but cannot really remember anything for three months. As you can see every case is different. If you ask you consultant he should be able to tell you
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  • Posted

    Hello Angela,

    My 9 yo son had decompression surgery for a Chiari malformation two months ago. He started back at school today and has no complications or weaknesses from his surgery.

    The actual surgery took nearly 4 hours and he spent the first night in ICU with his head bandaged and tubes everywhere. In the first couple of days he suffered from severe pain and vomiting but was given medication to help. Within two days he was up and about and attending the school on his ward. It's amazing how quickly children bounce back!

    On day 5 when he was due to be discharged he had a recurrence of severe pain and vomiting but it settled within a day. He stayed in hospital for one week post-op. 

    Since he's been home he's come along really well. No more headaches, no more vomiting or double vision. He was a little wobbly on his feet for a couple of weeks but that's all. He can't play contact sport for a while but is otherwise able to do everything.

    It's pretty tough as a parent to watch your child go through major surgery and the resultant pain. I wish you and your son all the best ,


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  • Posted

    Hi Angela, my daughter had decomoression surgery at the start of July, she has Chiari with Syringoymelia (CSF) she didnt need to go to ICU & has made an amazing recovery. she was in pain after & the sickness lasted for about 4 weeks, but she was up & about by the 5th week. Hope youre son's surgery went well. 
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  • Posted

    hi, i first spoke to you a few months ago when you joined and told me about your son. my son who is 9 is doing ok just now which is a relief. i remember you saying your son was going in for his op in aug, he has been in my thoughts. has he had his op? if yes i hope it went well and cameron and i wish him a speedy recovery. love suzanne. x
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