A success story and some hope for those thinking of getting treatment

Hello everyone!

It has been a while since I have logged onto this forum, and I have been planning on updating you all of my progress. I haven't used a computer since the operation (until tonight) and I wasn't sure how my eyes would cope!

Before I go on about the surgery, I must thank all of you for your tremendous support. You were all so encouraging and supportive. This forum was/is my first port of call for anything AVM related - whether I had a question, an apprehension or just wanted to "be around" people who just "got it".

The removal of my Grade 3 (3.5cm) right occipital lobe AVM was in 2 parts. The first part was an embolisation which took about 3hours, and I felt very much normal after that.

The big operation was 2 days later and went very well. It took the doctors over 10 hours to do the operation. The concern was about my vision. My neurosurgeon said that there was a 50/50 chance that my left visual field would be affected completely (complete left hemianopia), which was very scary. That was the biggest fear for me.
After seeking support here, I realised that I would be able to live with some lost vision... but would not cope with a bleed if that was to happen!

The doctors visited me everyday in hospital and my neurosurgeon was so skeptical that my vision was intact. Apart from some blurriness, I could, most importantly, see to the left! Every time I told the doctor that I could see the left side of things, he did not trust me and he said "oh, we need to test that". I got a formal test and it showed that the vision was there, all within normal limits :)

After the operation, I was extremely drowsy and for a couple of days, I was not able to really interact properly. After 2-3 days, I was a little less drowsy and started walking around.

I got discharged after a week in hospital and I got a little stronger each day and a little more alert each day, and then it was all uphill from there.

Today is exactly 4 weeks since the big operation. Although I still need to nap during the day (I feel like a little baby), I am feeling much more alert now.

My vision is still not 100%, but it is so minor, that I can certainly live with that. It is the finer detail to the left, especially when reading, that it gets a bit blurry. I was reading the label on a tray of sausages at the supermarket, and I had to stare at it for so long before I realised that the price was $8.38. I thought the tag said $38.38. I was outraged at how expensive these sausages were!!

The back of my head is still swollen. I am hoping that once the swelling subsides, the vision will be better. Other than that, I am completely back to normal. I am fully mobile, independent and feel great.

I feel so lucky and blessed that everything turned out so well. If you are reading this and are thinking of treatment options, I just hope and pray that you have the best outcome possible.

I am attaching a picture of my 32 stitches :)

Kate :)

Katie, I’m so happy it went well! I hope your recovery continues successfully, and your vision continues to improve. You already recovered from the shock of high sausage prices, so that bodes well for the rest…
Thanks for sharing, as your message gives hope to those who are facing or considering surgery. All the best!

Congratulations Kate! So pleased for you. Don't feel like a baby, nap whenever you need to. You need rest now and for some time to come. Thank you for sharing your success story with us!

I really wish I had my staples counted :( lol !, But its great to hear how well your doing Kate and I was exactly the same situation as you 1 week in hospital and the major thing after surgery was being tired :) , I had a little speech problems but that was down to tiredness, I found that when I was well rested and sitting and resting I was fine , just after a short walk or getting up I had some issues getting the right words out, But that went away after a few days. Well done on such great results and hope all continues to improve as the days go on.


Hi Kate. I meet the surgeon next Tuesday. Glad you’re feeling better! I’d be outraged at $30+ dollar sausage too. Lol