I am currently 3 years post rupture, craniotomy, and all that stuff, but I can’t help but feel like I am still not the same person I was before. I used to be really smart and now I feel like I struggle to get good grades, then quickly forget all the information I’ve learned. All my friends get annoyed because I don’t really listen to them, and if I do I just forget it the next day and they have to tell me again. I feel as though I can’t have a normal relationship because of it. I also feel as if I can’t talk to anyone because none of them know what I’m talking about, so I’m very grateful for this sight! By the way I’m 17, rupture was when I was 14! I don’t really know how to go and edit my page so that I can put my whole story on there! Anyways does anyone else have memory problems, how do you deal with them? I feel as if I should be 100% recovered by now but am not, so if you have any comments on that too, that would be very beneficial! Thanks
Have you had a neuropsych assessment? If not it could be extremely helpful to find out your new strengths and weaknesses and teach you ways how to cope. My surgery as well happened at 14 in the left occipital pariatal lobe and although my vision loss seems most relevant I struggle with processing information issues the hardest to cope…it sounds like that may be what you are struggling with
Hi Bearcat, Yes, this website is great. Makes you realize you are not alone. I, too, had a rupture from my surgery. My avm was located left frontal..I am ten years post surgery and still have problems with focusing, memory, stamina, and I have a strange migraine syndrome that includes headaches, sometimes just the auras, sensitivity to light and ringing in my ears. All of these issues are magnified when I am fatigued. I try to be careful and not get overtired. I avoid crowded noisy places. My friends understand my memory problems and are very forgiving. And thank God I have my speech back. It also is affected when I am tired. It is a life changing experience. I have a new normal to live with. Like Shelby, I think a neuropsych exam would give you some answers. Thankfully, I am in Chicago and have an abundance of good health care providers. My neurologist is the best. I wish you good luck and patience. Do not get discouraged. Come to this site to talk...Darla
I am nearly 4 years past brainstem (pons) stroke, resection via crainectomy and shunt. I am of average intelligence and since surgery I process and absorb information at a slower rate but full of gratitude it has vastly improved. I read lots even aloud which has improved my retention. I also meditate twice daily to keep my mind free of unnecessary clutter. I won't be the same and that is fine because I wake up every morning with a huge smile. Please keep using your brain as much as possible to your best ability. I've had to relearn quite a bit and it gets easier. Always try to be kind and patient with yourself.
Hey hunni, please don’t worry, it takes time and the more you dwell on it the worse you THINK it is. Please don’t best yourself up, you have been through so much, I hear and understand your frustration, like the majority of people on here. It will get better and I’m sure it’s not as bad as you think, it may appear so, but remain positive… ALWAYS THINK POSITIVE. XX
wow bearcat you're so young and have already been through so much which definitely means that you are awesome and stronger than you think. and so is your mind. none of us really knows whats really going on in our brains and we're all adapting to our situations. don't give up, live your life to the fullest even if it means you'll live some things twice. i have memory problems too, some due to my avm, some just due to hard living. sometimes i forget if i've brushed my teeth or not (while i'm still standing in front of the mirror!!) and sometimes i still remember exactly how my friend felt in my arms that one time. what i remember and what i don't surprises me but things i do tend to remember are usually those that have emotional attachments or importance to me. other things like at work i just have to do over and over. memory is a complex thing just like our minds. just keep trying your best and remember this: YOU ARE NOT ALONE. WE ARE HERE FOR YOU. AND YOU ROCK. :)
Hi Bearcat! I didn't have a rupture; I underwent Gamma Knife Surgery (intense concentration of cobalt radiation aimed at the AVM)for a right parietal anterior AVM in June 2006. In 2011 an angiogram found no further evidence of the AVM. When it was diagnosed my symptoms were a loss of balance, I staggered like I'd been drinking, and would sometimes forget what I was trying to say. Since 2011 I still have problems with my balance and still struggle for words sometimes. I also have problems with short-term memory loss.
In speaking with my Neurologist after treatment I learned that problems I had struggled with all through school where most likely related to the AVM. The problems even continued into my adult life and any classes I took. I had no problem with true/false or multiple choice questions/tests, but really struggled with essay's or fill in the blank questions.
I've let people know that I struggle with short-term memory loss and ask them to give me a break if I forget about something they tell me. I let college professors know about it and let them know I have a problem with certain quiz/test questions.
I became a 9-1-1 Dispatcher and later fulfilled my goal of becoming an EMT-Enhanced. I struggled with the medical math and almost gave up, but I created a small notebook to carry with me with the medications and dosages broken down so all I had to do was look them up when I needed them so I wouldn't struggle to do the math while I was on a call. So you do anything you put your mind to...
I write down important things I need to remember, make a lot of lists and keep a journal daily at work so I know what I've done on certain days and can refer back to it.
I play a lot of computer and Nintendo DS games that help to train my brain and I have found it does help and my memory has improved somewhat.
Try talking to your Doctor's and ask them what would be the easiest way to explain your AVM to your friends so they understand what you've gone through and the effects it has had on your brain. Maybe you could use it as a school project and teach others about the struggles you and others face even though there isn't any outward appearance of a problem.
Adapt and overcome! Revisit and revise! and remember where there's a will, there's away...Good Luck Bearcat, you can win this battle.
Hi Bearcat, persistence persistence persistence… you have come through the hard stuff it’s now time to do the work. My AVM ruptured july 2013 in the cerebellum, just about everything was affected, speech, balance, eyesight, hearing, eating. 2 brain surgeries later 5 months apart, never ending daily rehab and only now I can say im 45% back. I dont think I will ever get to what I was before rupture as 52 years of age may not be on my side. But you have the time…So please keep at it… never give up…
I had a craniotomy at around 22, though my AVM didn’t rupture. I’m 31 now and admittedly I probably should have come to this site more often when I found it. I feel the same as you. I had to drop out of school back then to get the surgery and recover and going on nearly 10 years now I feel like i’m still not the same person and it’s extremely difficult to get other people to understand how that feels since the standard response is “just get over it, it was a long time ago.”
Like you, I previously did well in school, especially when it came to math (up until around 6th or 7th grade I was finished up Calc I). Since the surgery, I can hardly concentrate even on basic precalc/trig. Some days, when I leave the house, I end up walking back home within minutes because I get extremely anxious being completely unable to remember if I even locked the door.
A lot of the time, I avoid what friends I still have contact with because I don’t want to frustrate them being unable to recall things seemingly at random.
I don’t know how to tell you how I deal with it because it’s been a decade and I still haven’t figured it out and i’m struggling to finish even a 2 year degree hoping someone in response to your thread has a better answer.
I had my craniotomy three years ago and the memory tricks has been downright discouraging and depressing. Retaining info, short term memory loss etc. But I try to deal with it with humor. My friends joke and call me Dory from finding Nemo . I kindly ask people to repeat things often. And I Keep a daily calendar and use my phones notes. Whatever I can do to help myself. Hang in there, you just have to readjust to your new brain! But don’t be so hard on yourself, appreciate that you are a survivor! Take care!
So happy you found the site and people who can at least better understand what you're struggling with. People who have never dealt with an AVM don't know much about what it's like to live with some of the deficits treatment and ruptures can leave you with, and to be honest, it's so different from person to person that even people with an AVM that's ruptured, or with deficits from surgery or radiation go through a period where they have to learn about what effects their AVM has had on them.
Brains can recover and heal from trauma, but they generally take a lot longer than other parts of the body. It can take years before things start to reconnect and the brain can form new neural pathways or the old ones heal. Meanwhile, we have to do what we can to lead the kind of life we want to.
Not everyone will understand what you're struggling with. Hopefully you'll find a couple people who do understand and who can be supportive - and you can always count on this online community to offer support, help, and understanding. And on top of it you have the tasks that can be tough for perfectly healthy young adults to accomplish.
I had some very specific memory problems when I first got home and was done with rehab, so I tended to write things down. What worked for me was to jot down notes about important things that had gone on during the day and then review them the next morning. It was far from perfect, because in the course of the day things would happen that didn't strike me as important enough to write down (Holly found out the shoes she ordered were the wrong size when they came so we're going to go exchange them tomorrow afternoon) and I'd forget something that hadn't seemed important but would end up coming back the next day (I totally stood her up because I forgot I told her I would go with her back out there to exchange them and ended up going to the gym instead - OOPS!)
Best thing to do is to be up front with your friends and tell them that there will be things you won't remember, that you don't mean to insult them or be difficult, this is a result of your surgery and you'll need them to bear with you and be understanding when you forget stuff. You're still really smart, your brain is just looking for a way to reconnect the way it used to so that you have a better memory.
Keep us posted and let us know when you need support!
I know exactly how you feel! My rupture was about 3 years ago as well. Did you go through any occupational therapy? I had an OT who helped me with short term memory recovery specifically. I’m not sure if I would’ve recovered as well as I have without it. In any case, hang in there and keep at it! It sounds like you’re one of the lucky ones who’s come out of this with minimal deficits! Good luck!!!
No one on this site is the same as they were, and never will be. That person died when the rupture happened. I used to be an airline pilot. A dream that I pursued my entire adult life. Loosing that has been horrible. I am 180 degrees away from the man I was. It is a slow process to get used to who I am now, let alone like him. Take comfort in that you are young, and do not have so much of a life time to mourn. You have decades to become accustomed to who you are now.
As for memory, yes we all suffer from some loss of memory to some degree. Like you, sometimes I don't even know I have forgotten something until I have been reminded of that. I told a friend of mine the story of my rupture, and hospital stay. He told me that I had already told him that, but let me tell the story anyway. A friend of mine visited me in the hospital, but I don't have a stron memory of her being there. She says she did, so that is my memory.
How to improve? I use the brain games from Lumosity. It is pricey, but does well. The memory games are the hardest. I even have trouble with basic math problems. Also, look into truBrain supplements, or other nootropics. Some do not help, which is why I chose truBrain. It works.
Hello Bearcat... I am 4 year post craniotomy and have similar issues. I wake up every morning thanking the good Lord for my life. Attitude is everything! keep reading the different post that people struggle with and you will find that you are lucky. Make an appointment with a neuropsych and let them tell you what your limitation are and start dealing with them.
Every reply I have read thus far, should give you comfort knowing we are all be here for you. STAY POSITIVE and be STRONG.
God Bless you.
Mine ruptured 10 years ago and was told with radio stero tactic or something like that mine would shrink, die and disappear in a year. 10 years later, still the same and have memory problems. Can’t remember anything that happened the day of rupture, and if I don’t think about something at least every few days it will disappear in a few days. I only remember 2 Things since the rupture. My brother asking what’s next? Ad e said I don’t know we’ve never had anyone around here get thi far,he should be dead. And remember my son getting into an accident where he could have died or seriously hurt. Besides that I lie in bed at night trying to remember what I did that day, or what I might have done since then. I run into a lot of people that I have met since my incident and I just go along with their conversation like I have known them for years. I told my wife, that it was a good thing we got married before hand or I might forget her. That’s a lie, inwould and could never forget her.
Good luck with you troubles and if you feel like talking, hit me up on Face Book.
It’s been 25 years for me. In my case, I’ve recovered about 80% and that’s probably all I’m gonna get. I have problems with memory to this day and people at work don’t think I should blame it on an operation that happened a long time ago. However, for me it was just a little time ago. I can remember how smart I was before better than what I forget today. It can be frustrating, so I have to concentrate on little things like keeping notes on my cell phone and using the calendar as often as I can remember. I spent the whole day yesterday just organizing myself, but it made me happy to get there.
My goals have changed. I used to be superman and now I’m working more on getting by. I found a group that helps me, but I’ve lost track of them recently. I think it’s time to go back. It makes me real nervous because they could have changed, but sometimes, I just have to go and talk to them anyway. It’s a CHADD group for adults. It just gives us a chance to talk about the differenc e in life for each of us. Excuse me, I drifted a little there. What I meant to say is survival is success for some of us. Instead of saving the world, I’m finding it better just to make through each day. I’ll never be what I once was, so now I’ll just have to work with what I am.
So, take it easy to determine what I have and what I can do.
Would it help if you wrote down what they said to you & you'd have it the next day to remember or a tiny voice recorder to play it back--would that help??
Thank you everyone for the support! I will definitely come back to this site! Yall made me feel a lot better and yall gave me a bunch of ideas to try and help me! I did go to a neuropsych to get evaluated and all they said was I had some attention deficits, I know there is more though.
This is a wonderful site for you to get information. I am so proud of you for reaching out! I am 65 and had a spinal cord AVM bleed into my brain three years ago. I have a short term memory problem now, so I keep a detailed journal of everything I do I every day, or else I forget. This might help you.I make to do lists.I write down everything that I need to remember. I tell people something twice, I forget people's names, I forget stories I have heard, I say,"Who cares? I'm alive!!" When I meet someone new, or someone I already know, I tell them my name and they always tell me theirs and that helps in social situations.
Our little AVM problems are not widely known by the public.So trying to explain to your friends may be a waste of breath. Focus on yourself and Your are recovery which continues every day!! You are still as brilliant as you were before. You just need to learn some new ways of doing things.
As far as your friends thinking you do not listen,I have trouble with that, too. I only have so much bandwidth for chatter. Then I glaze over and cannot pay attention.My family is aware of this and will mention when zI am "glazed over." Then they know they have to repeat what they have said, or they have to tell me later.
Be kind to yourself. Forgive yourself for these changes. Eat good food. Drink plenty of water and get lots of sleep! Read as much as you can every day to get those neurons working.
You are alive and that is the most important thing!! Laugh at these silly inconveniences. Make yourself a happy life! All the best to you! Good luck!
I can tell you humour has gotten me through my AVM diagnosis 18 months ago & memory loss! I named mine TED who lives in my head! Lol. Sometimes Ted makes me stutter, sometimes Ted makes me forget things… sometimes Ted makes me repeat myself 3xs, sometimes he makes me angry or sad! My friends have really liked this & they talk to TED too!! Lol
I had GK surgery, so TED is shrinking & hopefully will be gone in the next 2 years. But man… TED has been a pain in my head & the reason for all my troubles for all these years. We all have memory problems to some degree… we had this tangle or cluster in our brain. Some removed/some not! It’s our brains that have been messed with, we have headaches, concentration problems… people just don’t understand! Not even our Dr’s!! I used to multitask @ work & have two jobs. Now I barely get out of bed some days.
Keep your head up bearcat, stay positive & know we all suffer! I keep notebook in my purse for all Dr. Apts, use my phone notebook app for everything & my friends just giggle when I repeat myself 3xs!! I know when I start stuttering it’s time for bed or I’m over tired. Sleep is key!