Treatment

January 11 2007

Angiogram of my AVM

The amazing neurologists and neurosurgeons at national taiwan university hospital had a big discussion about my case. The angiography told them that the AVM was about 3cm in diameter and roughly 3,5 ml of blood in volume. which is small, and if it were in any other part of the brain would not even be operated on. in fact, normally the AVM would have to be twice that size to even cause a problem. but because of its location something had to be done about the little bugger. The good news was that there had been no bleeding 'yet'.

So, there are three options when dealing with an AVM:

1) brain surgery- where they open up your skull and literally 'pull out' the offending veins.
2) embolization - where they would perform another angiography and then use the catheter to inject a glue-like substance to block the veins and arteries forming the AVM. the effects of this treatment are instantaneous - as soon as there is no blood flowing through the AVM, all symptoms disappear.
3) Gamma Knife Radio surgery - where tiny, accurate beams of radiation are directed through the brain at the AVM. the radiation slowly shrinks the nidus (main part of the AVM) and any other connecting veins. the recovery period for this treatment is one to two years.

i got door number 3, gamma knife radio surgery. national taiwan university hospital has excellent neurosurgeons, but no leksell gamma knife machine. there is only one hospital in taipei that has this machine, taipei veteran's general hospital. i left national taiwan university hospital after just under a week; on Thursday, January 11th; with bags of anti-convulsant and anti-seizure medication, muscle relaxants and something to help my brain metabolism. i had to make the trip alone because colin was working. leaving the hospital and arriving back at home was a strange experience. nothing seemed familiar to me anymore. 'home' was not comforting, it didn't even feel like 'home' anymore. this was the home of the girl who chain-smoked, drank red wine, dressed fantastically and could dance all night, not that of a stumbling spastic in pajamas, an invalid! everything in my life had changed, it wasn't even my life anymore. it was all about this 'little fucker' in my brain now. i mourned the loss of my 'real self'; who was i now? whoever it was i didn't want to be HER, i wanted to be ME!

but as angry as i was and as cheated as i felt i still had to deal with the reality of what was happening to me. this was 'my life' now; hospitals, doctors, medication, pain, terror, depression, but also hope. i was scheduled to meet with my neurologist, dr. tai the following tuesday and then meet my neurosurgeon, dr chung at the veteran's hospital on the thursday. but my brain had other plans. i started having terrible convulsions on Saturday night, January 13th. none of the medication was working even though i was knocking it back like crazy. colin and i were really scared. i was in tears and felt like my eyeballs were gonna roll out of my head and my body was gonna either tear itself apart or stiffen into a statue. i was having trouble talking and breathing and generally looked like the girl from 'the exorcist'. poor colin was in a state, he didn't know how to help me.

worried about hemorrhaging, we ended up in the emergency room of taiwan university hospital. this took a while as we didn't know the word for emergency in chinese, but i'm sure just one look at 'exorcist-girl' and her panic-stricken boyfriend was enough to get anyone to understand what we wanted. i was put into a room and given all the usual emergency care; glucose drip, oxygen, heart rate and blood pressure monitor. then the nurse had to find a doctor who could speak good enough english to understand what our problem was. once a neurologist had been called i had an emergency CT scan, where they injected the contrast medium through my entire blood stream, scorching my whole body this time. the CT scan itself was quick and easy, no claustrophobia-inducing tube this time. i was lucky, there was no sign of bleeding and i was sent home after my convulsions had stopped.

what my visit did precipitate though, was an earlier visit to the neurosurgeon. dr tai phoned me on the monday, January 15th and said he had set up an appointment with dr. chung for tuesday, January 16th. all i had to do was go to taiwan university hospital on tuesday morning to pick up copies of my diagnostic history and MRI and angiography images and then go straight to the veteran's hospital. i was very happy that dr tai had fast-tracked my meeting with dr. chung.