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AVM Survivors Network

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#1

Hi I’m new to the site just wondering if anyone has heard of the trigone region of the brain that’s where my avm is the consultant says

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#2

Amanda,

Welcome! It is great to see someone else from Leicestershire!

I don’t know where the trigone is but by Googling, it looks like it is the joining point between various of the ventricles in the brain. Pretty mid-brain as far as I can see.

Do you know anything else?

Very best wishes

Richard

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#3

Hi Richard thanks for that I will have a look on google I’m waiting for gamma knife at Sheffield as they can’t operate as it’s too deep in the brain

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#4

Gamma knife is typically used when it is otherwise impossible to get at, so makes sense that that is the option you’ve been offered.

I had embolisation at Nottingham myself and my AVM is much more on the outside of my brain, so I don’t have any experience of gamma to share with you but have a read round here and ask anything you like. We should have people who’ve been there & done it.

Very best wishes

Richard

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#5

Ok thank you

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#6

HI Amanda and also a warm welcome. I love to see Leicestershire as my wife and I met a couple from there in Jamaica in 1999. Fond memories and a ton of fun they were for sure! I had an AVM in my left temporal which ruptured, fast forward 6 months and all the scans and angio I had Gamma Knife. Rupture was May 16, Gamma Knife November 2016, and the all clear in February 2019. Mine was quite small and on the inside of my temporal, thus the gamma option vs the risk of surgery.

Any questions about gamma feel free to ask! Take Care, John.

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#7

Hi JD12 I had a bleed dec18 was all ready for gamma knife then my blood pressure has gone up so I’ve got to keep a daily record as they won’t do the angiogram till it goes back down I just wanted to get it done but now I’ve started worrying about it.did you have any side effects from the radiation?

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#8

I don’t believe I had any side effects that I attribute to the radiation, I have some residual due to the bleed but I think less all the time. That is dealing with short term memory but like I said I think that s improving. The day of gamma was fine, the “halo” was a little uncomfortable installing but really not bad. The rest of my day went smooth. I was headed hone by lunch time. I did have some weird head feelings a few months in, I chalked it up to some swelling that is not uncommon. I did not need any medication and basically monitored. The staff, Dr., nurses and physicist were great. Mind you the scientist wasn’t quite as interactive but was clearly darn smart which I was fine with! The wait is difficult but I found it got easier as time went on, further away from the bleed. Time and distance from that event was a good thing! Take Care, John.

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#9

Hi Amanda,
I’m awaiting gamma knife at Sheffield also, was the bleed in Dec the first you knew of your AVM…? And welcome to the site, which has been a great help to me.
Mick

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#10

I only found out in December about the avm was having really bad migraine and memory problems prior then suffered with neck and back problems which then went into my legs I went to the doctors but they said I was run down. Two weeks later I was in hospital stayed in for nearly three weeks still having problems with memory and cannot walk very well have to go in a wheelchair.has your avm affected you in anyway?

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