Recovery - what to expect

Hello Everyone,

My mom is 62 and had her AVM removed on May 10th and had her bleed on May 4th. I'm wondering what to expect during her recovery? At the moment she is unable to remember in sequence, has little ability to concentrate or focus and has a very childlike personality. The Doctors keep on saying how great she's doing. But, I'm worried that the chidlike personality will never go away and that she will be unable to have a conversation, or go back to work, or ever even be alone again. Physically I have hope that she will regain her strength, I'm more worried about her mentally. Does recovery start like this for all AVM survivors?

Unfortunately, because every AVM is different…every recovery is different. I am certain that the last 2 weeks have seemed like an eternity to you. But in terms of recovery…it is a nothing. The brain heals very slowly but it can heal! At 2 weeks post bleed I was still paralyzed. My suggestion would be to try and pace yourself. I know how hard life can be for a caregiver.

I will echo what Barbara said in that 2 weeks is nothing in terms of brain recovery. I can only share my own experience. Short term memory is very often affected with brain injury and it will most likely improve greatly. I will say though that after 4 years there are still times that I forget entire conversations from the previous day. It isn't every day, more like maybe once a month. That's a big improvement from the time I was coherent enough to remember after my bleed. Try to be patient. The brain has an amazing capactiy to heal but it takes time. I wish your mother the very best as she continues her recovery.

I agree with the others, 2 weeks is no time at all for a brain injury. Two weeks from my bleed, I was facing physical therapy, occupational therapy, and speech therapy. My brain bleed also caused me to have a stroke. My speech therapist used to make me recite simple stories and I could not do it. Eventually I got better at it. The brain is an amazing organ. You will be surprised at how fast your mother progresses. When I came out of hospital (spent 1 wk in hospital and 1 wk in rehab hospital), my parents came and stayed with me while my husband was at work. After 4 weeks, When they felt comfortable that I could drive myself to therapy as well as stay at home by myself, they left. I found that the best thing for my brain was sleep and quiet. You could have described me as having a childlike personality, too. It’s more like you can only deal with so much and the rest doesn’t matter. You may find the book, My Stroke of Insight by Jill Bolte Taylor, helpful to read. She was a lot worse off than your mother (and me), so I figured if she could do it, I could do it, too. I wish you the best and I will pray for a speedy recovery for your mother. Please let us know how she is doing.

Hi Michelle,
I echo everyone else since everyone's bleeds, treatments & recoveries vary.
Generally, your mom will experience fatigue and will require A LOT of rest.
Have you expressed your concerns w/her docs & asked their opinions for recovery?
From personal experience of having 4 surgeries for multiple CM's (in same vascular malformation 'family' as AVM), my recoveries were all different. Three of my surgeries that were in 'less' eloquent locations had smoother recoveries when compared to my 4th surgery which was deep in my brain & #4 surgery required neuro rehab.
Louisa previously posted these articles & I feel it speaks for the majority of 'us' @ &
Best wishes to you, your mom & family & pls keep us posted on her surgery.

Hi Michelle so sorry to hear about your mum but she is over the worst bit now so that is some reassurance,
No one will ever be able to tell you for sure what stages she will go through or how long it will last which is frustrating I know but each person is different. I have been through most of the age stages you mentioned even went back to being baby like and right now im stuck in a teenager state, which means I can have a 'normal' conversation but i can be mischievous at times. my family say i got more of the old me back after about 8 weeks of coming out of hospital. i would expect her to get tired easily and have the occasional off day where she is dizzy and have headaches but im sure everyone on here will agree that you learn to deal / live with any long term implications of the surgery and bleed.
stay strong for your mum it will be a very confusing time for her right now but our thoughts are with you and wishing you the very best of luck xxxxxxx

Hello Michele,

Comments you were receiving were right. Recovery takes time. Three years after avm removal, I am still recovering. In disability now due to not being able to do my previous job--Engineer. Calculation problems, lost of conciousness, easily disoriented and depression. Brain is a very complex organ. We only use a fraction of our brain but they do function as a whole for the body. Damage to those is very critical. I know what you mother is getting to. Childish behaviour could also be attributed to a mild seizure. Best to consult your Doc. My Doctor diagnosed certain behaviour I expressed as that. As a caregiver, more power to you. My wife was very patient and still is. I was very aggressive/childish. Looking back and remembering, I was out of line. AVM related? Not sure. Good Luck to you ang hoping that everything to be all right.

Hi Michelle my son had his surgery last september he still gets very tired especially towards the end of the week and it can effect his memory,he also has headaches and personality changes but that could be down to his anti seizure meds like the others have said the brain can take awhile to heal, hope your mum makes a speedy recovery sending best wishes to you all x

Its perfectly normal that after having such a serious operation that the drugs and brain swelling may cause these issues. It does take time but she is alive & well by the sounds of things so be grateful that she has this second chance and she will need family more now than ever. God bless everything will be just fine.

Hi Michelle,

Thank you for posting this! I can relate, somewhat, as my younger brother (age 24) had surgery on May 14th to remove two AVMs, and we are dealing with similar issues. Like your mother, the doctors and physiotherapists say he is coming along well, but we are finding it so painful to see the changes in him - he's lost some mobility, has speech issues and can't seem to recall his own name sometimes. He also has erratic mood changes. However, today he smiled for the first time since surgery and stood up, with assistance, so bit by bit he's coming along - I hope the same for your mother. I think it's going to be a long journey and I have no idea where this is all headed, but a nurse in the neuro ICU told us today that with neuro injuries/post-op, personality fluctuations are perfectly normal, and usually settle down. I will be thinking of your mother's recovery, and your family, and wish you the best!