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AVM Survivors Network

14 year old niece. Proton? Gamma?


#1

Hi I have a 14 year old niece who has just been to see a consultant in Sheffield, UK. She has been advised to start Gamma knife surgery in January. The avm is 6.5cm, from what I understand, purely from the internet, this is quite a large one. She has been told that the treatment poses a risk to her optical nerve and memory. I have also read that the success rate of gamma knife with large avms isn’t too good.

I have been reading through this forum and have seen proton therapy pop up. As far as I am aware this treatment isn’t yet available in the UK. Can anyone explain whether they believe this whether this may be a viable option? Would she be able to get an appointment in a European clinic?

Thank you for any help, Lisa :slight_smile:


#2

Welcome to the site Lisa, its great you’re here. Breaks my heart in hearing of young people with these things, I have a daughter who will be 14 December 30th, so strikes a nerve for sure! I can’t help with the proton therapy, don’t know anything about it. I have a small AVM in my left temporal and had gamma knife just over a year ago. The 6.5 cm does seem fairly large for gamma. I’d certainly be getting the long term plan and prognosis nailed down. Take Care, John.


#3

Lisa,

I did a bit of googling yesterday and found places that treat cancer using proton therapy in Europe – France and Germany specifically – but no mention of use for other things like an AVM. What I did find re AVMs was saying it is applicable in paediatric treatment and less damaging when treating larger AVMs.

I’ll have a further look.

Richard


#4

Dear Lisa,
Our son have had Proton radiation for his AVM, 2,5cm left temporal lobe. Our Doctor in Sweden consulted with a lot of other Doctors in Europe and USA and they finally agreed that Proton radiation would be the best option. As far as I have understood, the Proton radiation is less damaging to the area surrounding the AVM, more exact. We have a very fine clinic built and ready 2016 in Sweden, city of Uppsala. This clinic is handelling people from all of Europe. This year in May we had a 1 year follow up with MRI and the AVM was smaller by 50% and now we hope it continues to shrink. Our son was tired like a month efter the treatment but after that fine. Warm regards from Cecilia


#5

Hi Lisa. I’m not familiar with proton. But my avm was right around 6cm. I had to have embolizations, which basically shrinks the AVM. Then they did gammaknife. 3 years after gammaknife my avm was gone. I do have some peripheral vision loss and some minor memory loss but all in all I am still productive and can work and run and play sports and what not. Maybe embolizations is something they can look into ?


#6

Lisa,

I’ve found a few articles…

but everything is cancer-centric (much more prevalent than AVMs) and not in the UK, so far as I can find, before mid next year. Though, actually, mid 2018 isn’t that far away by the time you’ve waited in an NHS queue…

Did the guys in Sheffield suggest that proton beam therapy would definitely be more appropriate, or were they comfortable that gamma knife is suitable? I guess that 14 is a lot more mature than some very young cancer patients whose bodies are still very much forming and it may be that the indication for proton v photon is that much younger age.

We do have an article on “proton v photon” somewhere… I’ll look…

Richard


#7

Press v down-arrow or follow the link…


#8

Thanks John. Thats my birthday too :slight_smile:


#9

Thank you richard. I have emailed a few in europe the last couple of days and passed the info onto my sister. Need to get hold of her mri scans etc. Not sure how easy that is in the UK.