Short term memory loss after AVM rupture in 16 yo

Support Parents and Care Givers of AVM Patients
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Hi! I just recently found this group, and there is so much helpful information. My 16-year-son Experienced a ruptured AVM in June. We have been fortunate after a long summer in the hospital and acute rehabilitation that his physical recovery has been remarkable. He had a craniotomy in September and had his AVM removed. Again very fortunate. He now suffers from short term memory loss, executive functioning, and slow processing skills. This part of the recovery is moving incredibly slow. There are some days where I think his memory is getting better and there are other days when I’m not sure. He is in both occupational therapy and speech therapy for cognitive deficiencies. He was an incredible student before his bleed, which is helping him develop his strategies during recovery. All he would like is for his short term memory to return. He said he can handle the executive functioning, and, slow processing as it comes.

My question to this group does anyone out there have a teenager that had a similar experience? Did you see their short-term memory improve? I realize every injury, brain and recovery is different but I’m looking for some positive stories. I hear how a young brain is still plastic and that new pathways can be created. But in some of the literature that I’ve researched, I’m not sure if this truly recovers a short term memory loss.

I appreciate any input! Thank you!
Beth

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Hi Beth,

After reading your post, I can relate to your son’s situation with my daughter’s story. I’d like to share my experience to give you hope and encouragement. Just hang in there, support your son, and stay positive.

My daughter, who is 15, had a reptured/stroke on Oct 2022. She spent a month in the ICU and another in rehabilitation. She faced some memory loss, but we kept reminding her of the events before the stroke, and we saw improvement. On Jan 2023, she had a craniotomy to remove an AVM, and her recovery took a long time, similar to your son. Like him, she had memory loss, slow processing, and some issues with executive function. But after six months, we noticed significant improvement.

I want to emphasize that the six-month recovery period is challenging for both the child and the parents. Patience and support are crucial. I understand the difficulty for parents, so connect with friends or family members who can offer support and instill confidence in your son’s gradual improvement. Things will improve with each passing day.

A year after the surgery, my daughter has made progress. Though one side of her body is still weak, she can walk, exercise, and even join archery competitions. Her speech has improved, though not fully recovered, and she sometimes talks slowly with pronunciation challenges. It takes time, but we keep encouraging her, focusing on her progress.

I understand what you’re going through as a parent. Stay mentally strong, be positive, and assure your son that he’ll get better. It’s only been four months since the surgery, and there’s a lot of room for improvement. Hang in there, and feel free to reach out if you have questions. We share similar experiences, and I’m here to support you.

Sending you lots of luck and a speedy recovery.

Linda

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Thank you, Linda for your personal story and input. I appreciate it. It’s a lonely process… for our kids and us. My son is improving very slowly. I just hope and pray his short term memory improves enough that he can be successful in school, go to college and achieve the goals and dreams he has…the things that are important to him.

I wish the best for you and your daughter. Your timeline sounds similar to ours. I think my son will have a multi year recovery. I pray for your daughters continued healing. Thanks again for sharing your personal story.

Beth

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@BethD
I was 19 when i bled and I think you can read my history.
It’ll be similar in some ways to your son but i think the most important thing is patience.
I wasn’t patient!
Looking back, yes I had memory problems. I ended up with a visitor’s book because I couldn’t who had been to see me and when. Within 6 months i didn’t need the book.
Playing cards can help retrain the brain to develop memory.
I had to find new ways of remembering and i still do ok but i don’t have the same intellect that i had before the bleed.
His brain has had a major trauma and will hopefully recover but unfortunately it can take time.

Good luck
Tim

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Thank you, Tim. My son does keep a journal and we play lots of games at home with the family. I think he has more patience than I do. But I can see frustration coming through when it comes to his schoolwork, which used to come easy for him.

What do you think helped you the most with your memory? Was it your journal? Did you read and annotate a lot? What is your best exercise other than patience! Do you feel that recovery is life long? It’s a true test… the patience part.

Thank you for your reply! I wish you the best.

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Hi Beth -

I had an AVM rupture when I was 21 years old. I am now 46. In the beginning, I felt like I couldn’t remember a thing. I almost feel that although time helped, I learned how to compensate for not remembering things. To this day, I sometimes have this overwhelming feeling of how things happened and people will look at me and tell me differently. It feels like the ultimate form of gaslighting. As a patient, I still struggle and it has been over 20 years! However, I am remembering this aren’t I? I fine that I love to read, but I can never really remember things for very long, I love to travel, but am often told by my husband where we ate, what the weather was like, even what we were wearing. I enjoy every and all things when it comes to my son, but am often corrected for misremembering things. Our brains are just rewired, I guess. But know this…I am happy because I have learned to live in each and every moment and be truly present, mostly because I know I might not remember it fully. Life for me is at 100% - all the time. Please let your son know that he will learn to live a healthy beautiful life…and so what if we don’t remember the finer details…or what happened two days ago…we are too busy living in the moment anyway. - Molly

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Beth. I was 65 when I had a AVM removed from my left cerebellum in 2016.i also lost short term nemory and I did 2 years of Physical Therapy, Occupational Therapy, Cognitive Therapy and also therapy for eyes, ( I have double vision from the surgery)
What worked for me to help regain my short term memory was constant book reading. It took roughly 1 year before I started to remember what I was reading and also remembering tv shows that I watched.
I fully recovered except for the double vision in 2019.

Your son is still young his recovery might be quicker. I suggest reading, talking to him and asking him to repeat back what he heard. It is a long recovery but hang in there, it does improve.
Michael Barber

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Hi Beth
Out of curiosity , where was the AVM located?
My daughter. (15) has a right frontal/parietal lobe AVM.
She struggles with executive functioning, as well as mood regulation.
Recently she’s had some difficulty with word retrieval.
This is a journey, but it sounds like you guys are making good progress.

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I think after going through such brain trauma it is inevitable that we experience some form of memory loss one way or another.

The big picture is that time does heal but we must remember that we are alive & well as survivors… so minor set back in my eyes personally.

Prior to my bleed & craniotomy I was considered well above average when it came to general comprehension etc… however noticed that had changed dramatically post surgery & still til this very day near 14 years later.

It does worry me & does get me down at times, however being here alive is much more important to me… we can exercise our minds to improve over time & work on strategies to assist our memory but we can’t change the outcome of this path that chose us as survivors & I wouldn’t change a thing as it’s made me the person I am today… God bless!

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Hi! Sorry for the late response!! My sons was in his occipital lobe. It hasn’t yet been 9months since the rupture and he really is improving. But it’s slow! He is on aricept to see if this helps with memory and organization. He keeps a journal and is now writing several pages a day. He journals his school days and each subject. He is reading more now too and annotating along the way. It’s all helping.

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That’s great to hear… I think adjusting is a key thing in this life of ours & as humans we are quite resilient & capable of adjusting our lifestyles to help us physically & mentally… God bless!

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Hi Beth welcome to the group. What you describe about your son is exactly what I am going through from time to time. my rupture was about 7 years ago and yet despite having left the hospital and made huge progress with my recovery I am still impaired with my memory at times. Sometimes the brain’s way of recovery may take a very long time and it may even take a lifetime depending on how your brain reacts to the initial injury. All I can say is that you shouldn’t be too scared as the brain cells can reorganize themselves to heal and make new neural pathways. There are plenty of cases where someone has had way more serious injury like having an entire hemisphere removed and yet they function normally as if they never had a head injury. just give your son some time his brain will eventually organize itself. If i were you i would encourage your son to eat food that is rich in omega-3 fatty acids as it is the brain’s building blocks. Foods like Salmon and wallnut are rich in fatty acids and have improved people’s cognition after a head injury. I hope this helps

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Hey Sam,

I completely agree Sam. Many years ago the theory was that certain regions of the brain controlled certain functions, this has now been proven to be quite wrong and it is now better understood that the brain can be retrained to take over certain functions. This process is known as neuroplasticity.

There are some sites that have games to exercise the mind and encourage neuroplasticity. Here’s a couple of links I have found, with Luminosity being one I have used myself.
Neuroplasticity Games,Brain Training-Teasers-Riddles-Exercises-free online | Brainturk
Lumosity Brain Training: Challenge & Improve Your Mind
Elevate - Your Personal Brain Trainer (elevateapp.com)

By no means am I suggesting that these sites are ‘the answer’, but as a tool to assist in recovery, personally, I have found them to be beneficial. These are but 3 of the many resources available to aid in recovery and it may well be worth investigating which specific sites may be of specific benefit to you and your circumstance.

Hope it helps
Merl from the Modsupport Team

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