When Brain Surgery Suddenly Seems Like a Good Idea… Part 2

So the knucklehead has had the Chiari Decompression surgery.

He went into theatre at 11h30 on Friday morning, and they wheeled him out of recovery at about 16h30.

The procedure took about 4 hours, and my mommy darling and I spent the day at the hospital to wait.

He was asking for me as soon as he started coming around – very disoriented and scared and in a lot of pain.
It broke my heart to see my baby so afraid and so sore.
He grabbed my hand and refused to let go until we got to ICU, and then I had to wait outside while they hooked him up to everything. We were allowed to spend about 30 minutes with him after that, and then we had to leave and wait for the next visiting “hour” (its only 45 minutes long at night).

I saw the Neurosurgeon after he had checked on him in ICU, and he said he was happy with everything, and that he had been able to remove a smaller piece of the skull than he thought he would have to. This is great.

He is still in ICU, probably moving to a normal ward tomorrow. He’s in a lot of pain, but the BP cuff on his one arm has been removed, the oxygen tubes in his nose are out, one drip has been taken out, and the electronic pressure sock-things have been taken off his legs, so he’s a little more comfortable. When they move him tomorrow the catheter will come out and the arterial line will come out. The central line in his neck will stay in, just in case they need a drip.
Incredibly, he has already regained the feeling in his right arm and chest, in fact his skin is so sensitive he twitches at the slightest touch. Hopefully this will ease in time, and the crazy itch he used to get around his right eye has stopped.

He’ll be in hospital till about Friday, and he has several weeks of recovery ahead of him, but he’s better and stronger every time we see him. He’s arguing with me now, and wishing the ICU staff would just let him sleep! He has been able to sit up straight, and he’s gradually moving his head and neck a little more. 😀

We are exhausted from driving up and down to the hospital several times a day, thankfully I don’t have a lot of orders pending and I am going to keep it that way for a few weeks until he is properly okay on his own.

Thank you all for your love and prayers!

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.