Tripping

Hi all,

After chugging along in traffic for the better part of an hour we arrived at Unitas this morning, in time for my appointment. I had a good ole moan most of the way as I was really hungry and thirsty, but I wasn’t permitted to take anything orally. I understand this perfectly well, but it doesn’t take away the hungry pangs.

Dad got down to the business of the forms while Mom administered the sedative cocktail that the radiologists had prepared for me. Our main reason for going to Unitas to have the MRI done there as opposed to Morningside Medi-Clinic is that at Morningside I get put under full general anaesthetic, which is not great. It also means being admitted and a whole additional schlep. So Unitas was chosen for the convenience of sedation.

I downed my cocktail and after a brisk walk up to the Wiesenhof Café for some water and sandwiches for Mom and Dad I started to feel drowsy. Back at radiology reception I fell asleep in Dad’s arms. The rest I’m oblivious to, as I was in such a deep sleep, but apparently Mom took me into the MRI unit and there Carolina strapped me onto the sliding top that would post me into the massive machine. My head was strapped into a cage and sound cancelling headphones were popped over my ears (anyone who’s been for an MRI will know that the knocking noise is intense). A vital statistics monitor was set-up nearby to monitor my breathing, pulse and heart. Mom then took up her post nearby on a chair with a book, and the two of us were sealed into the MRI unit, the massive vault like magnetic door hissing shut. Typically people aren’t allowed to stay in the MRI unit with the patient, however because I’m a littley, Mom could stay. She too was offered sound cancelling headphones.

Apparently an hour went by during which just over 450 images were taken of my head and brain. As the MRI concluded I started walking up. I felt drunk and I giggled at everything. I couldn’t sit upright unassisted and I missed my mouth a few times trying to feed myself a few crisps. Mom and Dad’s laughing just caused me to laugh more, so it was actually quite a hilarious time – definitely better than anaesthetic. This is apparently what it feels like to be drunk or to go tripping on E!

It would take a further 40 minutes to develop the slides and cut the CD of images, during which time we settled in at the main reception of the hospital. I opted for a snooze, and woke up just in time for my appointment with Dr Lippert, my neurologist. He studied the slides of my brain and asked Mom and Dad heaps of questions about my skills and talents. As a final test he asked me to post some coins into a letter box shaped piggybank; I passed with flying colours. He chatted some more with Mom and Dad during which time I opted to show-off my stair climbing skills. Dr Lippert then did some more tests with me (felt more like playtime) and I again passed with flying colours.

The outcome of the meeting is that there is no evidence of neurological damage, which is believed to be quite miraculous, given the enormity of my AVM nineteen months ago. Furthermore, there is a decent amount of ‘brain volume’ which apparently is very important. He further confirmed the ventricles are looking good. A ‘cake of veins and arteries’ are still visible, which are causing a shunt, but not much else. Mom did discuss my headaches with him, and it was confirmed that if they weren’t debilitating, which they’re not, they can be treated with OTC medication. They are unfortunately a real and possibly lasting outcome of my prognosis and procedures.

The fact that there is still a degree of ‘stealing’ of oxygen from parts of my brain by the AVM remains a concern, as the optimum would be for my entire brain to obtain equal and similar amounts of blood, and subsequently the necessary amounts of oxygen. It is this stealing effect which is one of three drivers for my undergoing further embolisation. The two other drivers are the current plasticity of my brain, owing to my youthful age – any procedures on the brain are best done before 2 years of age as the brain is still plastic up to that age and is malleable enough to deal with the onslaught of surgery and intrusions. The third factor that makes further embolisation feasible is the hypertrophy of the veins on the other side of my brain, i.e. where there is no AVM present. This effectively means that those veins would be disadvantaged and cause good cells to suffer.

Based on these three factors it was suggested we pursue further embolisation of the large supplier vein that was evidenced from the MRI scan.

From Dr Lippert’s offices we headed to Prof Fourie’s offices. He had a jolly old play with me, in awe of my remarkable recovery. He too, based on a discussion he’d already had with Dr Lippert, felt a further embolisation was the appropriate course of action. We chatted for a while longer and Prof Fourie confirmed that the publication that he was doing on the treatment of my AVM was reaching finality. Apparently the only outstanding information was that from the University’s Department of Engineering, specifically the faculty specialising in fluid dynamics, to confirm the formulas associated with the flows in my veins. These formulas will decipher the successes of the occlusions. The sad news was shared with us that Dr Scheepers, Prof Fourie’s protégé and participant in my procedures, had moved to Nelspruit to ‘get out of the city’.

After chatting to Prof Fourie we visited the nurses at PICU who looked after me while I recovered from prior procedures conducted at Unitas. There I chatted to Kate and Marinda, who both ooo’ed and aaa’ed over my excellent progress. Marinda was especially pleased, as she was on duty the night I almost ‘checked out’ all those months ago (see my blog titled ‘Back from the Edge‘ dated 20.09.2008).

It was finally time to head back home after a really hectic day spent at Unitas. As we were walking out the building Dad’s mobile rang – it was Charlotte from Prof Fourie’s offices to confirm that my next embolisation was scheduled for next Thursday (28.01.2010). Wow, that was quick!

I slept on the drive home, and once home, Mom skilfully transferred me to my cot where I stayed snoozing for much of the rest of the day. When I woke up it was raining and the house felt really peaceful and quiet.

Late in the afternoon Mom had a long chat to Dr Nicoletta to apprise her of the day’s proceedings and the outcomes. She was very supportive and in agreement of the approach and next steps. Mom established that she was in the car on the way to the Classic FM studios where she will be appearing on Classic Health as Karen Appelbaum’s guest, talking about childhood medical matters. We all felt super proud of her. Tonight will be the second time she’s appearing on the show.

Well, that’s it for tonight. Another success and a set of positive news. Thanks to all my fans for your wonderful posts on my blog, SMS’s and emails to us throughout the day and your supportive phone calls. A special thanks also to Cornel from Dad’s office who sent dinner home to us via Robin (aka Mr Delivery); a stunning dish of bobotie.

Love to all.

Hugs,

Jarrod

PS – Click here to view a YouTube video clip of me ‘tripping’ after my sedation.

Figure 10 Herewith one of the 453 images from my MRI today – you can clearly see the large feeder which is still a concern to my medical team