Hi, I had my AVM rupture back in 2012, which was located on my front right temporal lobe, I am now more recently having short term memory problems, for example today I went to an ATM, withdrew some money and stood there thinking my card had been swallowed, when in actual fact I had already put my card back into my wallet! This example could be down to auto pilot, but I’m wondering if anyone is in the same boat, or has been?
I do also now have a suspected cranial CSF leak, which has been ongoing for around 2 years, could it be this?
A quick Google tells me that yes, memory trouble can arise from CSF leaks.
Having said that, I’ve been able to forget what I went upstairs to fetch since I was about seven and I used to walk to school without being conscious afterwards of crossing roads! I know I did it safely at the time but to try to recall crossing the various roads on the way to the school bus, aged 13-18 was a no no for me quite often.
Age plays its part, as well. I am now really quite useless at knowing if I’ve locked the car or locked the front door etc. but then I’m now retired and into my sixties.
My current approach is to try to be mindful when I do these automatic things: I’ve not tried saying out loud to myself, “car locked” etc but I’m at the point where I should try something.
What is being done about your CSF leak? 2 years seems like a long time. Do you need to check whether some other treatment to try to resolve it is appropriate?
Best wishes,
Richard
Oh. p.s. I’ve removed your personal details from the MRI image. Much better to remain somewhat anonymous on the internet when we are busy talking about our health.
maybe it was a moment of autopilot amongst some others
I now, need an up to date blood test and an MRI “with a different flavour” but the neurosurgeon has already said he wouldn’t want to open me up in case of complications, as he’s my original surgeon.
I do have a peritoneal shunt which is clipped, so I guess that could be an option…
I should also mention, I don’t have fluid coming out of my nose or ears, it’s possibly a very slow and small leak from a bone flap defect.
It is actually nice to meet a fellow temporal lobe AVMer. Mine is on the left side but exactly in the same spot mirrored. Had a bleed last year from … “life-ing too hard” and was told to chill the hell down. I had the same feedback from about 3 doctors, that the AVM is too small (mine is 1 cm) and too risky to do anything about it as the risks with any intervention are way higher than not doing anything at this point.
I’ve also struggled with a bunch of stuff, asking myself “is this the AVM or is this just normal”, and still do I guess to a certain extent. The 2 months after my bleed are a complete blur and I always wonder if it’s just the anxiety and stress and confusion which my mind is just blocking because I just want to get over it, or is it an actual neurological by-product of the bleed.
What I usually do (and this is all thanks to my therapist) is just take a deep breath, close my eyes to silence all the stimuli, and play back the last few seconds in my mind and I always remember, which proves to me over and over again that it is definitely not the AMV but just the auto-pilot and the rush. As Richard says, age is messing with us all and in some “funny” ways.
I do wish you best of health and luck with fixing everything you need to fix to be able to enjoy your life with less anxiety and stress.
I had my brain hemorrhage due to an AVM in 1998. Especially shortly after that, I had major problems with my short-term memory. On one occasion, I bought a can of Coke from a vendor with a cart, took the can and put it in my pocket while paying, and after I had paid I had completely forgotten that I’d put the can in my pocket and instead asked the vendor where my can was! It ended with me getting another can, and only later did I discover the one I had put in my pocket.
Even now, almost 30 years later, I still suffer from my poor short-term memory. I also have a very poor sense of direction because of this, but I’ve found different strategies to help me remember things, navigate, and so on. I take a lot of notes on my phone; today we have smartphones that work very well, where I can, for example, mark on a map where I parked the car or enter notes about things I need to remember.
Hi! My experience is a bit different, but wanted to let you know I relate on the memory stuff. I was diagnosed with a cavernoma (CCM) in my left Hippocampus. Since surgery my long term memory is a bit fuzzy. It can be very frustrating. I’ve started to journal and take a lot of pictures to keep it all fresh.
