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AVM Survivors Network

3 months post gamma knife


#1

Hi everyone, it has been exactly 3 months since I had my GK treatment at Sheffield, UK. I haven’t heard from my consultant or had any follow up at all? My scars have healed but still have overall hair loss. Anyone tell me their experience post GK?


#2

So good to hear from you! Yup- I had the hair loss also… The docs said I would have a bald spot however I pretty much was losing it all over. You should be nearing the tail end of it though. I didn’t have any follow up after the GK either which is weird, you’d think they’d wanna see you! But nope. I did have an MRI follow up with my neurosurgeon though 6 months post GK. were you informed when you would be seen next by anyone? Glad you made it through though!! My scars healed pretty well also and with a little powder, even I can’t find them!


#3

Hi there,
I was really looking for some advice and help. I’ve been advised to have gamma knife surgery at Sheffield for my AVM but it comes with a 5-10% risk of causing severe damage to my vision. Plus the fact I’m TERRIFIED!! Can you help? Give me any advice? Did you experience anxiety when making the decisions?
I’d really love to hear from someone who has gone through it (and based in uk). I feel it’s ruining my life :frowning:
Alex.


#4

I had gamma knife three days ago, they said they’ll give me a call in 6-8 weeks, and I would be back in one year for an MRI. Based on that the Dr. felt probably another 6 to 8 months and then an angio. Of course no “for sures” until each test but they are great about giving likely scenarios.

The decision for me was fairly easy, my original surgeon wanted another MRI and angio prior to making a recommendation to me. I told him when we were done all these follow up tests that I would ask him, if he was me what would he do. Move ahead a couple months during decision appointment he looked at me and said “If it was me I would go with gamma knife” decision made and he referred me to his colleague, who did the gamma. Of course there is the fear and risk of another bleed, but given my specific set of facts, he gave his recommendation and I took it. I had 100% confidence in my folks, they were great.