When Brain Surgery Suddenly Seems Like a Good Idea… Part 3

Our knucklehead he was a little more mobile every day, and walking into ICU and seeing him sitting up on his own almost had me crying with joy. His PT and doc encouraged him to start walking and go a little further and further each time. He lucked out when he got a private room after his ICU stay – he could sleep to his hearts’ content with no noisy roommates or machines!
By day four it didn’t hurt so much to chew anymore, so he could have something other than soup and he was thrilled! He also asked for his laptop once he moved out of ICU ‘coz he said the hospital TV was boring. 
Dry shampoo spray was awesome as he wasn’t allowed to wet his surgery cut! He felt better and stronger every day, but he couldn’t go without pain killers for more than a few hours.
After 7 days in hospital, including 2.5 days in ICU, he was really glad to be home. He could at least “shower” on his own after needing help in the hospital, and we gave him a haircut to match the shaved square around his cut.

He was sore! So very sore! I cried myself to sleep a few times in the weeks following his surgery ‘coz my baby boy was in so much pain, and waking up in agony in the wee hours of the morning. And he got VERY bored, and his back hurt from walking funny because he was trying not to move his neck, and all I wished was to make it all better.  He wasn’t allowed to bend over, or lift anything heavier than 3kg, and a car ride was absolute torture for a good day afterwards – the involuntary movement of his neck in the car made him so sore!

The cut on the back of his head was 10cm long, and he had 17 stitches – they came out ten days after his op. How incredible was his progress over two weeks!

For those who have asked – his diving career did not cause or aggravate the condition. He was born with Chiari Malformation (we didn’t know it), and the syrinx in his spine has been growing for the last 20 years or so. And even with the Decompression surgery, he is not cured – there is no cure for Chiari Malformation and Syringmyelia – and he has a looong six months to a year ahead of him of taking it easy and recovering. And waiting and watching to see if the Syrinx in his spine shrinks enough – its this that caused the loss of sensation and pain in his arm and head.

He is so much better now, 111 days since his surgery.
He is still battling with a little pain behind his eye from Occipital Neuralgia, but it is much better than when he started regaining the feeling in his face and the back of his head. And whilst he has regained most of the feeling in his arm, neck, and face, the tips of his fingers are still numb. He has another MRI scheduled for the end of June, five months after his operation, so we can see just how much the syrinx has shrunk.
I am praying for a miracle…

2 thoughts on “When Brain Surgery Suddenly Seems Like a Good Idea… Part 3

    • So glad to hear his recovery has progressed so well. Life sure throws some curve-balls when you least expect it doesn’t it?! Really hoping for the best possible outcome for your boy!

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