When Brain Surgery Suddenly Seems Like a Good Idea… Part 1

Never one to do things in small measures, is my knucklehead.

For a few weeks he had complained that his fingers were numb, and it quickly spread up his arm all the way to his neck and the side of his face.
We went to our usual doc, and she quickly referred us to a Neurologist. Thursday we saw the Neurologist, and she examined him and found he had lost feeling in his arm and chest, as low as T4. She was concerned so she sent us to book an MRI.

Friday morning he spent a couple of hours in the MRI, and the Neurologist phoned us a few hours later and said it was what she had suspected and she was going to try and get hold of a Neurolosurgeon. We went back on Monday morning for a quick chat with her so she could explain what the MRI showed.

The knucklehead has Chiari 1 Malformation and Syringomyelia.

In the simplest terms, it means that the base of his brain protrudes from his skull, putting pressure on the brain and spine.
He was born this way.
Some people can live with Chiari 1 and never need treatment – the complication for the knucklehead was the formation of a Syrinx inside his spinal column, which extends from the base of his brain to T8. This is a fluid filled cyst caused by the Chiari, and it has been growing in his spinal column for years. It is this cyst that is causing the loss of feeling.

We saw a Neurosurgeon on Tuesday, and he has booked the knucklehead for surgery on Friday afternoon. Its called a Decompression, and this will relieve the pressure on his brain and spine, and the Syrinx should then be reabsorbed over time. This takes months, and its different for everyone.
The important thing is stopping the progression of the nerve damage, and hoping for no further complications.

Its fucking scary. I am battling to keep my brain from spinning out of control because I have been reading up on it. My darling Glugster is my rock, and keeps me sane.

My precious knucklehead is like me. We tend to clam up and want to hide away when we’re dealing with something big and scary.

I am terrified. We are terrified.

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About Angel

Wife, mom, cake artist, Guide Dog puppy raiser, ADHD champion, wedding planner, and tattooed cat slave.

6 Responses to When Brain Surgery Suddenly Seems Like a Good Idea… Part 1

  1. Gill says:

    Oh Angel, my thoughts and prayers are with all of you! Sending you the biggest hugs. Please keep us posted xx

  2. Chris Cariou says:

    Angel: Yes, Holy Shit. You have proudly written about The Knucklehead for years about his ADHD. Then, The Glugster came into your life. All 3 of you are super-strong. Use that. I wish you all well. Love you guys.

  3. Adele says:

    Oh dearie me!!! This situation freaks me out as well. But please stay calm for the knucklehead’s sake. All the best and I’ll be thinking of you guys.

  4. Louisa says:

    Shit Angel, sounds terrifying! Keeping you guys in our prayers.

  5. Gina says:

    Holy crap Angel! That is freaking scary!!

    Sending you guys all the good vibes I can. I will include him in my prayers when bake my challah on Friday and light my Shabbat candles on Friday night.
    Gina recently posted…3 YearsMy Profile

  6. Bobbi says:

    Holy shit Angel. I will be holding space for you and D. Lots of love this week.

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