I had and brain AVM in 2003 having fits all over the place terrible days then I had Gamma knife treatment waited a while then they said it had been obliterated down to a size of a pea everything has been ok since apart from headaches here and there but my memory is terrible every since that treatment or seems to be forgetfulness as anyone else had problems like this thanks for reading this
Hi Rob. I had Gamma knife in 2016, I wonder sometimes if my memory was a sharp as it once was, however I am also getting a little older so wonder if it is consistent with the process. I think it is an individual thing for sure, but find I always remember the bigger things, it is those small items, or less important ones, that seem to evade me from time to time. So that is a positive for me, but the more inconsequential things seem to be very fleeting for me. I also sometimes have a bit of aphasia, trouble recalling words, which is consistent with the location of my AVM, most people don’t notice as I can usually adjust quickly and word things a different way. Take Care, John.
Hi. I didn’t have a bleed or seizures but I did have an embolisation. What I’ve noticed is that my ability to remember who said what when has taken a big dive post op. I used to be able to recall relevant items from work meetings without notes. That no longer happens at all! And my memory for people’s names can be shocking. Similar to John, I’m now in my late 50s and it’s difficult to know what is induced by age and what may have been induced by the rummaging around that has gone on in my brain with contrast material or embolisation solvent etc.
There are definitely people here who have short term memory troubles since a bleed or an op, so your symptoms are shared by others. Is this something that has changed recently or is it something you’ve been conscious of since about 2003? I’d suggest that if it is longer, it’s more likely to emanate from the operation. If it is relatively new, it would seem less likely to emanate from the op.
Thanks for your reply yes this memory/forgetfulness has definitely only happened since my gammer knife surgery I know it’s only radiotherapy treatment but something had deteriorated because of that treatment but it’s trying to get the right information from people I know it can happen with age but this started happening straight away
Well, if it’s any consolation, I feel my ability to recall meetings went in line with my surgery. I’m not sure there’s anything to do about it other than develop some ways to manage. For me, it was to have to keep notes but it was very frustrating to be about to say to someone “I’ve had a meeting about this… when was that meeting? where was it?..” when anecdotes would previously have fired off the memory.
I think I’m a bit better post retirement – less stress perhaps – but I often recall who has said what in this forum recently. Though I may still not remember their name.
Find a method of dealing with it is probably best.
Hello rob. I had a avm in my brain too. It was medium size. Since my surgery, my brain memory sucks too. My wife will come home for lunch. Leave around 1 and buy 2-3 I call her and wonder why she dint come home. I feel for you. I think I’m getting better but I do have good and bad days. It’s very fusterating .
Thanks for your reply yes it is very frustrating and worrying not sure where to go from here I’ve spoke to GP but no response from them they don’t get it not sure where to go from here really it’s getting depressing now
I think the way we have to approach these things is not to worry that we have lost memory / function but that we have gained life. It may be a more difficult life but the alternative is even less good.
For me, I know how I felt my DAVF was developing in the period up to having an embolisation – I had a noise in my ear like the washing machine pumping out water every second, 24h a day and I was getting progressively more dizzy, to the extent that when I laid in bed at night, I would go extra dizzy due to my head being more on a level with my heart. It was very disconcerting and the way I was effectively sleeping was to lie more on an angle than flat – pumped up with as many pillows as it was possible to have. However, I don’t know about you but I can’t sleep like that!
So, the clarity with which I was convinced I needed the intervention was easy for me. Obviously, depending on what your symptoms were, you may be able to relate just as easily or you may have had very little in the way of disturbing symptoms (I also consider myself lucky to have had such obvious “something” going on because it provoked me to go and find out what was amiss. If I’d not been concerned by the bruit and the dizziness hadn’t appeared, I might have had a bleed as my first sign). So, think positively about what you have got rather than negatively about what you don’t.
It is definitely important to find ways to cope with limitations. If there’s nothing obvious that you can do to help yourself, a conversation with a neurologist about coping mechanisms could be helpful. I assume this is part of what a neurologist does, even today. I do know that in the many decades prior to surgery being a possibility, the job of a neurologist was very much around the study of the brain and how a person might cope with the challenges that something out of the ordinary presents.
Hope these thoughts help. Best wishes,