Gamma knife surgery for av malformation

[Wahid1971]

Hi everyone

This is the fist time I'm writing. I was diagnosed with an avm of the brain in may 2016 after a facial droop and a seizure. Since then I had gamma knife stereotactical radio surgery at Sheffield in Nov 2016. I take levitericitam and nortryptaline. Thankfully my seizures are under control. Since the gamma knife I have had more headaches, feeling very tired, wanting to vomit and started getting numbness in my left arm and leg. My consultant has booked me in for another MRI in sept of this year.

I had gamma knife 10 months ago and things seem to be getting worse. If someone has had a similar experience could you please share it with me to enlighten me as my consultant doesn't seem interested🤕

Many thanks in advance.

[lcd8]

Hi Wahid1971. I have an AV Malformation of the brain too but it hasn't been treated. I don't suffer many deficits and am worried that treatment would make things worse for me. I belong to another forum specifically for this problem (avmsurvivors.org). There are loads of people on there who had had Gamma Knife and are experiencing symptoms similar to yours. You may want to join and get reassurance that way. All the best.

[Wahid1971 in reply to lcd8]

Thank you so much for your reply, I will definitely join the group you stated.

[Trish5]

Hello Wahid,

I have a very small cavernoma ( 1cm ) in the cervelet which is hard to get to. I have no symptoms and the doctor has said we shouldn't touch it but because I might need to take an anticoagualt later in life, my surgeon wants me to have the Gamma Knife. Anticoagulant when you have a cavernoma can be dangerous and make them bleed.

My neurosurgeon said the risks are very low of anything going wrong. He said it would take two years for the GK to actually work and reduce and dry out the cavernoma, it doesn't make it disappear, you can still see it on an MRI.

I read it depends where in the brain the problem is as to what the side affects are. For example where mine is, it would affect balance if anything went wrong.

I know someone who had GK for another problem, not avm or cavernoma and 10 months on she is fine. It's annoying and uncaring that your consultant doesn't take more interest than he does.

I hope it's only temporary and all side effects go away eventually.

Trish

[Wahid1971]

Thanks for you comment trish.

My avm is 3.2 cm by 2.4cm on my right posterior frontal motor cortex.

And affects my left side.

Just hope my MRI comes out clear.