Moving forward to Radiotherapy next month

I have this week been to see two neuros at the main hospital, both of whom suggested that the series of seizures following my glue embolization were “probably” due to some inflammation of the area. Which makes sense, I suppose.

I have now been seizure-free for six weeks and if I continue I will be eligible for stereotactic radiotherapy in Dunedin on December 16 - 18th.

I don’t like to read all the complications that survivors have experienced since radiation therapy, I loathe my seizures and become very frightened when I think I feel one coming on. If the radiotherapy results in more as a the embolization did I will be very disappointed, but at least I will have some expectation of the AVM being obliterated, and the seizures disappearing with it!

fingers crossed. Thanks to everyone for your welcome and support.


good luck!

Hello Philip, good news about being seizure free for six weeks…yeah! All the very best for December and my thoughts and prayers are with you. Luv, Lesley.

Oh Damn and Blast!! Dunedin called today and they have used “my” December 16 booking to treat someone else, as confirmation of my being seizure free arrived a day or so too late. Of course they were most apologetic and the guy - Chris - who called was just doing as he had been instructed by the surgeons, so I could not be mean and criticise him about it, even if I had had a mind to.

It’s a bit of a blow but I will now be going down on January 20 -23rd, so not too long to wait I suppose…

My support person can’t make it then so I have asked my 18 year-old son to come down instead. He has agreed and I’m quite looking forward to spending that time with him, possibly with a chance to explore the city while we are there, although Chris did mention that I’d have some holes in my head !?

Anyway, that’s the update for now, and I’m so pleased that I smelt a rat with “Cynthia”, who didn’t really have much to say about her AVM, just wanted an email address.

Hope no-one else got taken in.

Thanks for all the kind words and encouragement - Bye for now, Phil

Right now Ive read this I can comment more, chris shilling is wonderful he is worth his wait, you will meet him and Lyndel Kelly whom will do your head, now just a word of the wise dont let them keep on putting your appt off as I ended up getting angry with them and I then got somewhere, and the holes are nothing, I got my head done and the plasters came off the next day and we went out for lunch etc the next day just you are so drained at the end of the day, chat soon

Janine thanks for that I’ve been talking to Chris a lot and though I’ve not met him in person he is a really good guy. Unfortunately he won’t be there for my treatment, so I don’t know who I’ll get, which is disappointing as I’d been looking forward to meeting him. Glad to hear the holes are nothing and you had plenty of energy the next day, my son is coming down with me and we are gong to do a bit of exploring…

Dunedin was so beautiful I was up and out the next day sitting in the pub having a cold juice and playing the pokies! I know but heh I was a little traumatized! LOL whomever you get they are all so wonderful there I cannot speak highly enough of them, you just go and have a good look around and Ill be thinking of you, I found biting on a flannel when they put the screws in really helped with the pain relief, chat soon take care