415. Some Direction!

Hi everyone!

So early this morning Granny arrived to look after me as Mom and Dad were heading off to Unitas to meet Dr Winter, the radio-intervention surgeon that took over from Prof Fourie.

I was thrilled to spend time with Granny, but at the same time I would’ve liked to have been with Mom and Dad to hear the info first hand, even if Mom and Dad don’t think that wise! (Truth is I understand why I don’t go on these appointments anymore – it’s because I’m so charming, so busy, and wreaking so much havoc that Mom and Dad don’t get anything constructive out of the meetings!)

Granny did her best to keep me busy for the morning to ensure my mind isn’t on the meeting Mom and Dad were at, and it felt like forever when they finally returned at midday.

Mom and Dad report it was a good meeting, and judging by the looks on their faces they felt relief. I must be honest – it was the first time in a very long time that their worry lines weren’t as deep as usual, and their tired shoulders had perked up a bit.

This is what was told me:

• My AVM is still present, and two fistulas are clearly visible
• Having said that, there is no immediate need or urgency for them to be closed
• The flow through the carotid arteries is good which was always a concern
• Whilst the venous drainage is definitely compromised, it doesn’t pose too much of a risk, as blood finds a way to leave the brain. If it was the arterial system that was compromised it would be very problematic
• Although I’ve lost white brain matter, it’s not significant enough to be of concern
• There is evidence of many sulci and gyri (the sulcus are the crevices in the brain, and the gyrus are the ridges). The reason this is positive it that it means I am clever (these folds do indicate brain capability) but more importantly there isn’t pressure inside the brain, forcing the cerebral cortex flat against the skull, causing the sulci and gyri from disappearing. Imagine a balloon being inflated inside a ball – it will try and fill all the space as it expands outwards. Because my brain isn’t being pushed outwards from pressure, there are many folds
• There is no immediate need for me to have a (dangerous) angiogram to see more evidence of the AVM – the MRI is sufficiently detailed to see enough of the anatomy of the brain for there not to be too much concern
• Because of my age (i.e. young) any damage in the brain could be compensated for elsewhere; an advantage adults don’t have – consider older stroke victims who actually lose capabilities. In my case there is no clear sign of deficits – in all likelihood my regression may be behavioural given the trauma I have been through.

Dr Winter has said that the next step is to take my case for peer review, which will be in August. There are a few more specialists in South Africa now, and there is a possibility that Dr George Rodesch from Paris will be here in August for the peer review.

Essentially the peer review revolves around all the doctors reviewing my case, and based on their collective knowledge and experience, the next steps will be decided. Since I’ll be over seven in August, any surgery becomes a little easier, in that the risks are reduced, albeit slightly (recall the issues I suffered with the contrast that was pumped into my body – given my increased weight I can handle more contrast) and the obvious one is that the stuff the doctors will be working with is bigger, because I’ve grown! For example, my veins are larger so it’s easier to navigate through them.

That is if the peer review reveals I need surgery. There are known cases of people living their entire lives with fistulas.

So after many months of turmoil and unknowns, we all feel we actually have more to go on now, even if it means to wait, but it’s waiting with a purpose, and given that my brain is basically ok. There needs to be some psychometric testing and IQ testing done and a lot more therapy, for me to go from strength to strength.

Thank you to everyone that has kept us in their thoughts and prayers, and have kept sending messages of encouragement – you know who you are!!!

Love

Jarrod

Photo 1 Feeling good….