My brother had a ruptured AVM the end of February. He was in neuro ICU for 2 weeks, then the floor for 2 weeks, then to rehab for 2 weeks. He is home now. Physically he is great. He was a runner prior to the rupture, but his memory is horrible. Every 5-10 minutes is like a new day. As part of his therapy he has to keep an hourly log and every hour he swears he has never seen the book before, but then gets upset because it is his own handwriting. Has anyone had this and then gotten better?
He is aware that he is impaired which just makes it worse. He gets angry and upset often.
Your brother’s situation sounds very similar to mine. I too had a bleed and have a short-term memory problem as a result. I too went to therapy, about 40 sessions over a year. When I started going to therapy I tested in the 8th percentile and finished testing in the 41st percentile. I don’t know what I tested before the bleed but it was more than the 41th percentile. So, to answer your question.. yes, my memory improved but it was a long slow road and times I got very frustrated but you have to try and stay positive and take one day at a time. Plus try not to judge his memory improvement day by day but judge it month by month. Some days will be better than others. As far as “tips and tricks”, here are a few of mine in no particular order
1)I move an object in the house out of place to trigger my memory. For example, I’ll leave the dirty clothes basket in the living room to remind me to transfer clothes from washer to dryer plus get clothes out of the dryer. 2)I hang things on the front door knob so I won’t forget them when I leave the house
3)I always park in line with the first letter of the store no matter how far away from the store so I don’t forget where I parked. For example, when I go to Target I park in line with the “T”.
4)I try not to use post-it notes so I don’t repeat a task. If I do use a post-it note, I date it and make sure to throw away when task is complete.
5)If I think of something I need to remember when I can’t write it down, I will call myself at home or work and leave myself a message.
That’s all I can remember now..lol
I would love to hear other peoples memory “tricks”
Hi , Its still very early days for your brother. My son had his AVM 2.5 yrs ago, he spent 4 weeks in ICU, 4 weeks on floor and 5 weeks in rehab. Since then he has had gamma knife surgery but no real help with re-training the brain, his memory is a real issue still. We give him notes but he forgets he has a note. It is hard i know, and i think he has had some improvement over time. e.g. if we remind him of something he is likely to recall it now. and he can walk to the local shop and find his way back, neither of these were possible for a good while after AVM. We have not been offered any resolutions to this matter and now we just muddle along and accept it, though my son finds it very frustrating. Its a long road, and it may be your brothers case is less severe who knows, i dont think theres a given time scale only that it rarely goes back to the way it was before AVM.Matbe the consultant can offer some therapies in your area? Kind regards Juliet
Short term memory loss is very common amongst those of us that have had a bleed. Like the others have said it's really bad in the beginning but it does improve. I'm nearly 4 years post bleed and it is still an issue for me, but greatly improved. It's very random though. I never know what it is I'm going to forget. Just when I think I'm getting better someone will say something to me about something we talked about and I have no recollection of it. The tips that Greg gave you are good. I've used some of them myself. It is very frustrating for him but I'm sure for you as well. I know I must have asked my husband as million times what happened to me. Try to be patient even when he asks you the same question repeatedly. Best of luck to your brother!
Brother, I went through the exact same situation, almost exactly alide. He will get better ..it just will take some time...Any in there..he will get better!
My daughter had a right temporal rupture and was hospitalized for 50 days. She also had no short term memory at first. One day she must have brushed her teeth about 18 times before mid afternoon. It did get better slowly and there were periods of excerbated emotion, for her tears and anxiety which she rarely had prior to the rupture. I attribute her recovery to excellent physical and speech therapy. The speech therapy especially worked on the memory and slow processing issues. The PT helped her tap into her muscle memory and work to regain balance. Her memory recovered very slowly and I never said "you already asked that" or "remember you said you would do this" etc. It only made her more frustrated when someone did that. She learned some excellent compensatory skills through speech therapy and from her neuropsychologist such as keep a little notebook where she writes everything down (where she parks, what to ask when she talks to a doctor, what their answer is, etc.), uses GPS, organized her belongings and texts more than she calls people. She still has somewhat of a significant short term memory loss but because she uses her compensatory skills so well many people do not know unless they are around her more.One other important point was she did some counseling for a year to help her deal with the frustration and anger at the reduction in her athleticism, memory struggles, loss of friends and way of life. Also, her neuropsychologist followed her quarterly for a year and he was excellent with her, telling her she still had all the intelligence she had before- her brain just had to work harder to make the connection to find it. Last of all, our hospital speech therapist called about interactive metronome therapy and said it is being used with some adults for memory and coordination things. This was 5 years after her bleed, but she did the therapy and we felt like it helped slightly too. What did we have to lose? Most of her improvement occurred in the first 2 years, but there has been slight improvement since. Best wishes to your brother.
My AVM bled in December 2002 and I had my embolization in late January 2003 and my craniotomy in early February 2003. Prior to all of that happening, I had excellent executive skills, especially my cognitive functions, short term memory, etc... Afterward, they were all essentially gone. I was told by my neurosurgeons that I would either be "back to normal" after 2 years - or not. If "not", then I would probably improve very little after that... However, my further aftercare specialists: (Speech Therapists, NeuroPsychologist) all had a different take on it. They all told me that I WOULD continue to improve AFTER the 2 year time period - and I have :)
As of today, I STILL see improvement in myself. I DO have bad days - sometimes - when I'm really tired or emotionally overloaded - however, I personally believe/ think that it would have been the same even if I hadn't had brain surgery. I think part of it is age (I'm 53) and part of it is just "life".
My tips and tricks: I use technology A LOT!!! I have an iPhone and a laptop that are always synced. I keep my calendar and my "to do" lists up to date on them...
I've also learned NOT to depend on my memory when I'm in an unfamiliar situation or I'm in a place with a lot of activity or stimulation around me like shopping malls and shopping mall parking lots, or an airport. When I'm in those types of situations, I make sure I write details down, so that I won't end up confused or lost.
Memory will certainly improve over time. You should not delay in getting him help - COGNITIVE THERAPY
If his speech is affected then he will require Speech Therapy also
Hello, I also had a ruptured AVM, ICU, Surgery, etc. When I came home after intial rehab I did not know who those nice people were...it was my mother, father, newly adopted daughter and my dog. It took about 6 months for me to remember them with clarity. I went through rehab for a year before I was dropped due to lack of Insurance. I had been the Assistant Director of Nurses for the Hospital I went down in with an Intense background in Critical Care. I did my own rehab after that point. I taught myself to read, write, mathmatic. Short term memory was very difficult but I learned with the help of computer games, soduku and an love of geneology. I have residual right side weakness and parathesia, right peripheral vision loss and a small amount of short term memory issues but I can tell you most people are amazed that anything happened at all. Time and work is what it takes and someone to believe in you....
"I never said "you already asked that" or "remember you said you would do this" etc."
I agree, my wife did the same thing. It's frustrating enough without hearing that all time.
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“One other important point was she did some counseling for a year to help her deal with the frustration and anger at the reduction in her athleticism, memory struggles, loss of friends and way of life”.
We went to see a neuropsychologist, this was a great help. We went together, by myself and my wife by herself. I think it's important that the caregiver talks to a professional.
to your point 'I DO have bad days - sometimes - when I'm really tired or emotionally overloaded'.
BINGO! me too! If I’m really tired I tend to have a rough day the next day. To help with this I sleep with ear plugs. This cuts down on getting knocked out of “REM” sleep. I saw something on 20/20 or somewhere showing the effects of not getting enough REM sleep. They would let the study subjects get 8 hours of sleep but would sound a low sounding buzzer right when they went into REM sleep. The test subject would get up the next day after getting 8 hours of sleep but the next day and days after they tested them on various skills and they would do terrible on the test. If sleeping with ear plugs be sure that someone is around to wake you up if there is any emergency or you need to hear alarm clock, etc.
one thing that i suppose sort of had a silver lining for me....altho i dont have serious memory loss, i do forget more than i used too - say ie, i will watch a movie, and pretty much forget most of it after 3 months or so. But thats not too bad - i get to watch it again after that peiod! Makes it worth while buyer a few DVDs...
I had a crainotomy and 4 embolisms in 2005 to treat a cranal avm after a "micro-bleed." I never had a good short term memory, and I certainly do not now. I become frustrated because I often forget where I put something that was JUST in my hand. If I put down my phone, I often do not know where it is minutes later. I try to put my phone/keys/wallet together (just have to find 1) and in familiar places.
I also have trouble remembering where I parked. If I think to think about it, I'll remember. It is not without some irony, however, that I often do not remember to remember where I parked.
One more example. I need to take pills twice a day to treat seizures. I rarely forget to take a pill - hundreds of things flash the quick question in my mind, Did I take a pill? But sometimes I'll walk into the bathroom to take a pill while thinking about my upcoming day. I'll stroll into the bathroom thinking about something work-related, take a pee, and leave. When I walk out, I can't remember if I took a pill or not.
In any case, I'm making it all seem worse than it is. Just some very short term memory loss. Sometimes I think it's just about paying attention. I'm opposed to taking any more pills, so I've never been tested for ADD, but I wouldn't be surprised. Remembering names can also be difficult.
But you just deal. This isn't meant to be discouraging. Some people can't swim. Others are ugly. I forget where I put my keys. No big deal. -Chad
I too believe anyone who tells you after 2 years you probably will not be much better should clam up. I had a massive bleed in 2000, had to learn how to walk, talk, read, write and memory short term and long term were initially non exitant. I rehabed myself after the 1st year due to loss of insurance. Every day I fight memory, parathesia and loss of self, family who think memory loss is a convenience, seizures and loss of my medical career that I loved. I run circles around my family in long term memory today and my short term memory has hiccups but is still better all the time. I definitely continue to improve all the time.....so do not let anyone tell you there is a time limit to recovery. Take each day as you feel and work on one thing you feel you need to and build on that. Write a journal to keep track of your feelings, your progress and reward yourself for every upward step you take. You are a living miracle I commend you and will always be here to accolade your every step.
So true (about the 2 year time period being the end recovery).... In January 2013, it will be 10 years for me since my bleed, embo's and craniotomy. I can't believe how much better I have become in the past 5 years! I really push myself and I think it's important to do so. The brain is an amazing organ that the medical field is continually learning more about. As a side note, I remember asking my NeuroPsychologist "why" my prognosis for continued recovery (after 2 years) was so different from what my brain surgeons said to what my after-care Doctors told me. My NeuroPsychologist told me that it's pretty typical for doctors to be "focused" on their area of specialty only... Personally, I found it very depressing to be told that I had probably "peaked" in my recovery (after 2 years) because I was NOT anywhere NEAR where I was BEFORE I had my surgery! I was devastated to think that the rest of my life was going to be spent in my (then) current state.... Again, 10 years later, I STILL continue to improve, and I get better all the time! The brain is an amazing organ :)
LOL! I read this and can sooo relate. I'll see the beginning of a show - I know that I've seen it before but have no clue how it progresses, so it's kind of new all over again.