A quick update on my son who has a temporal lobe AVM which is 4.5 x 3.5cm in size. Having been diagnosed 2 years ago, we had to wait nearly 10 months for his first embolization surgery. A follow up angiogram in May this year, confirmed that 85% of the AVM had been obliterated, but a small portion was still there and could pose a danger.
Last week - 5th November - he underwent a further op to try and finish this off. Unfortunately they had only just started when he suffered a seizure while under anaesthetic and the catheter pierced the artery and he suffered a bleed. The embolization was aborted while they dealt with the bleed, which unfortunately meant cauterizing and gluing up the artery which was their route to the AVM. The surgeon has now said that further surgery is too risky and he is going to refer my son to Sheffield for Gamma Knife treatment.
My son is extremely worried about this.. and frightened of brain damage to currently healthy tissue. Has anyone on here already undergone Gamma Knife treatment in the UK who could perhaps share their story?
Hi WorriedMum I’m really sorry to hear about your sons procedure not go to plan but sure there are many AVMers from the UK that can assist with your matter…God bless!
Dear WorriedMum, I don't live in the UK I'm from the US and I did't experience quite the same as your son, however I did suffer an AVM in my frontal left lobe that burst and bleed. I just had a seizure then a stroke then was in a coma for a week. My family was told it was an AVM. There's a lot to be told in my story, but 3 months after my initial attack, I underwent the Gamma Knife treatment. All I can say is I thank God to this day for it! Before the treatment and after my first attack I had memory loss (among other things) but the memory loss was such I didn't know my own family, friends, I didn't know anyone at all, not even myself. After the surgery is when I started regaining myself. I know who people are now! I'm permanently disabled but its not due to the gamma knife its due to the damage from the AVM! I now have memory loss, problems with emotions, focus, concentration, etc. But sometimes things come back to me. That's better than not remembering at all. It may sound strange but I know what I was like before the surgery and knowing that god put me in the hands of a capable dr. who knew what to do and how to do it makes me eternally grateful! I will say a prayer for your son and your family. And tell him don't worry, I know for a fact that stress only makes him worse health wise! He'll be alright! God Bless! :)
I had Gamma Knife at Sheffield a year ago and couldn’t recommend the team there highly enough. You’re in at 7.am and out by 9 the next morning. The fitting of the frame is uncomfortable but nothing to be remotely worried about. The procedure itself is a case of lying in a tube for (in my case) 45 minutes whilst you listen to your favourite music. It’s then a case of having the frame removed and going to sleep. The next morning after a quick check you’re free to go. Again, I can’t speak highly enough of the team there.
My AVM is a biggy and initially wasn’t considered a prime candidate for GK by one consultant - my other thought it was worth a go - within 1 year it’s shrunk “significantly” and barring some 2-3 second ice-pick headaches about once a month in the first 6 months I’ve so-far had no ill effects.
Get your son to send me a private message on here if you need any more info or there’s anything he’s particularly worried about.
Fully agree with Joe, the team in Sheffield is brilliant, I had GK 4 years ago there…please feel free to send me a msg if you have anything in particular to ask and I’ll be delighted to share my experience. Good luck!!
Not in the UK, but I've had 4 Gamma Knife treatments for an unruptured AVM. Due to the size, shape and location, mine wasn't a good candidate for surgery or embolization. I've also had a craniotomy to clip two unruptured aneurysms related to the AVM.
I have no permanent side effects from the GK. I've had hair loss twice. I usually end of up having migraines for several days afterwards, but overall, my migraines have actually lessened in frequency and severity.
I had gamma knife in Houston 2009 and have had great results with it. I've been checked 2 or 3 times since then to see how everything is coming along and I am doing fine. grace
Hi Worriedmum. I live in the UK like you and have a Cerebellar brain AVM. Due to location I have always been told that surgery is far too risky for me. One neurosurgeon did suggest I might be able to have GK at Sheffield. But when he consulted them they said I would need at least 3 embolisations first to reduce the size of the AVM.
So far my AVM is unruptured and doesn't give me many deficits. Because of this I have chosen not to proceed with treatment. Having read other posts on this site though it seems that the symptoms people have as a result are really variable. Unfortunately there are no 'typical' experiences.