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AVM Survivors Network

Avm and memory


#1

Does anyone feel like they began to have memory issues after having their avm removed, whether it was long term or short term memory issues. Also, did if so, did you have memory problems prior to getting surgery? Or if you felt like surgery benefited your memory by having it taken out please let me me know that as well. Thank you!


#2

This is confusing to me because my short term hasn’t been the greatest but since I’m on Keppra I feel it’s a little worse but I have co-workers that can’t remember what they were doing five minutes prior to what they are doing now. And they don’t have an AVM.


#3

Hi Corrina, I did have to laugh out loud at Kell’s reply about co-workers as I know how this feels, My wife tells me that my memory is worse now than it was before bleed and treatment, I was always a laid back guy and relaxed care free really, Now if I have to do something important I write it down or add it to my phone calendar with a reminder set to chime, This just helps, I don’t think its too bad, But is a little worse off, Its short term memory as I can still remember loads of things from my childhood etc … I too take Keppra but I don’t hold any value in that my memory troubles are anything to do with medication. Might have more to do with being a brain haemorrhage and double craniotomy survivor :slight_smile: , Do simple things that most others do to remember write notes have a wall planner in the house and add entries into it for appointments etc , this will help you and make you feel better also :slight_smile: , Take care

Martin


#4

What is keppra used for?:slight_smile:


#5

Anti seizure medication.


#6

@Corrina I have not had memory issues due to the avm, when it was active I was not sleeping - maybe 1 to 2 hrs a night and that impacted my memory. When I had my stroke prior to the avm forming I did have serious short term memory issues-

When I was in recovery at Stanford the speech therapist recommended doing puzzles, and those search for a word puzzles and there is a great online tool she suggested too and its free called brain for the games. Even my husband liked it.

I find that even though all my scans show my brain is 100% back and no perm damage even my thalamus came back I call it baby Jesus since the doctors said mine thalamus died during the stroke but some how its recovered I still have to double check some things with my husband esp spelling for some reason but maybe that is spell checks fault.

Sometimes trying to learn something like playing an instrument and using different parts of our brain can help. Since my stroke I have started to learn how to sew and increased my crocheting and knitting.

Angela


#7

What is your thalamus? Sorry, I am still so new to this and don’t know a lot of terms involving an avm


#8

@Corrina
Here is the definition

Thalamus
The thalamus is divided into two walnut-sized parts. Both are found deep in the center of the brain, between the midbrain and the cerebral cortex.

The thalamus is a vital structure that has several important functions. There are extensive nerve networks that send signals all around the structures of the brain including the cerebral cortex. The thalamus is involved in sensory and motor signal relay and the regulation of consciousness and sleep.

The thalamus may also be involved in the regulation of some types of memory. The thalamus and the cerebral cortex operate in a feedback loop, especially when it comes to the sleep/wake cycle. The thalamus not only sends signals to the cortex, but the cortex in turn sends signals back to the thalamus.

Damage to the thalamus can cause coma. The most common forms of injury to the thalamus cause central pain syndrome. This may be caused by bleeding (hemorrhage) when an artery to the brain is blocked.

Voluntary Functions
Motor Control
Consciousness
Sleep/Wake Cycle

It also regulates the senses of sight, sound, taste, touch and the sense of where the person’s body is in space. The thalamus decides which signals from the ears, eyes, mouth and skin to relay to its area in the cerebral cortex.

Angela


#9

Short-term memory loss has been my major side effect since my AVM bleed, ten and a half years ago. I have almost no memory of my recovery in hospital, although I completely remember the day of the bleed, the headache, passing out, and being wheeled into the ambulance. Then I have scattered memories of certain days in the hospital after my eleven day coma–some of my visitors, a tiny portion of the day I spoke French all day, and some other worries and thoughts that were in my head at the time. But that’s about it. I also only remember maybe a third of the memories from the year that followed, but just because it never made it to my short-term memory. My long-term is still great–I remember tons of things pre-bleed, and once a memory is poignant enough or I work hard enough for a short-term memory to make it to long-term, then it is there for good. I had a speech-language pathologist who helped me with my memory in the first few months after the bleed, but I would say all of my memory problems occurred from the bleed, and not actually just from having an AVM. My surgery was six months post bleed, and I have had additional surgeries since (all Gamma Knife surgeries or angiogram imaging), but I noticed no change as a direct result of the surgeries.


#10

Prior to my stroke, I had some very good types of memory and the remainder was acceptable. Since my stroke? Fah-getta-boud-it!


#11

Do you believe it was from the stroke that caused memory issues, or the surgery to get your avm out


#12

I think it was the stroke. It was pretty bad from what I’ve been told. My wife still won’t talk about or let me know what happened. My memories of what happened are inaccurate.


#13

I too had hemorratic stroke due to my avm. My long term memory is fine however my short term is horrible. My wife often says I don’t listen. I put appointments and my other important responsibilities in my calander so I don’t loose track. This has put stress on my marriage due to the financial responsibilities my wife has taken on. (i.e. payin household bills). I suffer from aphasic seizures and if I become overwhelmed I seize and I lose time with my family. I work through these same fears by talking to my wife, and my friends I tell myself that I can’t take care of my family unless I take care of myself. You are not alone and remember that unless you have experience with this condition it is hard for the outside to understand. We are here to listen and to support each other.


#14

Yes I had AVM surgery mid May 2017, and feel I have short memory problems , I’ve always had it abit before surgery for a long time , so don’t know if surgery has worsened it or not. If I’m given a lot of info at one time I can only remember bits of it and rely on my partner if he was with me to remind me of everything that was said. I’m with you on this one. Can’t seem to remember things sometimes.


#15

Hi all My AVM was discovered in 2011 after a car crash… likely I crash against a tree and a lamp post and did not hit anybody. I never have surgery for the AVM. It happened in Asia where I was living with the family… The neurologist said that as my case is unusual he won’t touch it. I am left handed and the AVM is on the left part of the brain… I am a teacher, an early years teacher as well as an English as a second language ESL teacher. At the moment I am in South America visiting my family, Had no problem with flying at all.
I never realised about the memory issue until read about it here. I can’t remember many things from years previous to the accident when people remind me about it is like I lived them before but not to clear…
quite embarrassing if you ask me… My short time memory is okay, i continue working with no problem at all.
Any way my case is asymptomatic so I had never had a headache or anything as such. only a very small fit as my family described it to me, I do not notice anything. looks like I close my eyes and lower the head a bit…only last for less than a minute and when I recovered from it I have not a memory of it and life continue…
If anyone needs a Spanish speaker to talk about the AVM I speak Spanish and English.


#16

Hi Corrine!
I didn’t have memory issues until the bleed. And since the bleed: first 2 years spent with therapists gaining back as much as possible. Next 5 years back to gainful employment, increasing income with each of 3 jobs. And during the those 5 years, no memory issues. About 6 months before the 5 year mark, I started having memory recall issues, which I was able to hide from all. Then in the month of May 2001 everyone began noticing I was having difficulty in the memory department. By May 15th I was disabled from my position at work. Currently I’m on 2 disabilities due to an cavernous AVM with recurrence. I have found that I DO NOT have memory loss, per say, I would call it misplaced memory. I may not remember right now, but some time during the next month I will remember “it”. Not always remembering why I was remembering that memory. But I also have noticed that if I’m not trying to remember something, it comes like a flow. Let me say this, there’s quite a bit of my memory that I would have to question, but my day to day memory is still good.
I hope this helps in some way, not trying to hurt.
Skippy


#17

@Corrina sorry for being the late one to the party! I got confused at first when searching for memory related threads and saw one by “corrina” thought it was me at first but that i had misspelt my name at first until fully reading your post! I have always had a very bad memory, before diagnosis and still. I have big gaps in memory. From childhood right up to a year ago or so, many thing i struggle to remember or recall. Sometimes with a lot of recalling from someone else I can vaguely recall what happend. I am better with short term memory, but even then I have noticed I have had to revise things more intensely than classmates. I always thought I was just a scatter brain, but I do wonder if the large AVM in my left occipital lobe is the cause -it has stolen a quater of my visual field without a bleed after all. Is this a possibility? Also welcome to PM me if youd like someone to talk to :slight_smile:

Corrine


#18

Like corrine, “I have always had a very bad memory, before diagnosis and still.” I have had memory problems my entire life. The doctors explained how the AVM deprives the area of blood inhibiting the functions of that area. My AVM hit the memory writer portion of the brain (I don’t remember the name of that part.). My wife has helped me survive the working world and finding a job where lack of memory is actually an advantage.

Still depression and anxiety are more problems to deal with on a daily basis. I’ve found I need to take the weekend to just sit down and do nothing. It’s hard to explain and some think this means I’m lazy. They don’t understand how I need this time to rebuild inside and balance things. Hard to explain and justify, but it works.


#20

Yes, I have memory loss both long and short term it is very frustrating when someone asks do you remember the time we did this…I don’t remember anything. I have some memories and they can be remembered wrong …I feel devastated .


#21

Hey thank you so much for responding to me! That’s really good that you haven’t had a bleed. I am sure you’re beyond grateful for that! Feel free to reach out to me about any questions you may have!