Walking/Balance Problems - Need to hear from you

My brother (age 55) had successful surgery from Cavernous Malformation at brain stem 3 months ago. He had lost many functions before surgery including vision, drooping eyelids and balance. Although some of these functions have improved, his balance is still not happening. He spent 6 weeks at rehab and continues to go twice a week as outpatient.
Has anyone had severe balance/walking issues and how was your progress? We are in the dark about what to expect and what might improve chances of getting somewhat better. We realize all cases are unique but would like to hear from others that have experienced some of these symptoms.

As you already said every case is unique. But I can tell how it was with me. My avm was in the cerebellum. After my surgery I wasn’t able to stand for 10 sec without holding myself. My surgery was last December and now I can ride my bike again. The big difference is that I am 28 years old and I am a sport student in university. So I had the best conditions to get better. But it was a lot of work with daily training and also 5 weeks rehab and after that twice weekly as outpatient. I still go once a week to my physio therapist. I know I was very, very lucky but don’t give up. 3 months is not a long time for the recovery. I wish you all the best and hang on! your support is really important for your brother!

The good news is he’s still improving, and three months is still very early in recovery. At three months I was just leaving the hospital in a wheelchair. I’m now at two+ years, and although I still don’t have use of my left arm, I’m walking with a quad foot cane. When I look back, it’s amazing how far I’ve come, and I’m still making progress.
Never give up, and have great patience with your brother. Press his therapists for more information. If you don’t like what you hear, there’s always other therapists. Hang in there!

I woke up from my craniotomy completely unable to move my left arm or leg (the AVM ruptured during an emoblization and they had to rush me into emergency surgery). I regained all movement and coordination within 4 months, although there was a difference that I could feel in how my body responded. I could still do all the dance movements I needed to do, but I had to -push- a little harder with my left side than my right. Because I was a dancer, I was able to enhance my PT and work very specific muscle groups to strengthen them as much as possible as quickly as possible.

Years later, I started to have trouble with my left foot and ankle and it turned out the AVM had grown back (like one of those villains in the cheesy horror flicks who never dies no matter how many times you shoot him). I had gamma knife 6 months ago to try to remove the thing this time and am in the waiting process to see if it worked or not.

The good news is that the brain can rewire itself to move functions to another place if one place is damaged. The bad news is that it takes a very long time. Years, in some cases. And it takes consistent work. Balance can be a core issue, so the stronger the core muscles are, the better your balance will be. Things like yoga, pilates, and specific exercises like planks will help with core strength.

Everyone's rehab happens at a different rate - the older you are the longer it will take the brain to rewire itself. I highly recommend Doidge's two books - "The Brain That Changes Itself" and "The Brain's Way of Healing". Doctors used to tell stroke patients (which is very close to what AVM survivors with cognitive or movement deficits are) after a year has gone by, they won't make any more recovery. Now they know that's wrong. Recovery can continue for years as the brain attempts to make new neural connections.

Encourage him to talk to either a certified personal trainer or a yoga or pilates teacher - both of those exercise classes are often used by people for rehab purposes and a certified teacher will be able to help him pinpoint the best possible exercises to improve his health and mobility.

And tell him to try his best to be patient. His brain is doing amazing things, but it takes time. This isn't like healing from a broken arm, this is rewiring and growing new connections.

Best of luck to you both!

Thanks a lot for the info and support. We will keep moving forward and try to have patience. Your progress in inspiring.

We are listening to your suggestions and realizing what a long road this will be. Thanks for your support

Yes. Patience seems to be the hard part. All the info and suggestions are greatly appreciated. I will suggest yoga and other exercises outside of PT as a supplement. Again, thanks so much for your concern and support. Wish you the best as well

I could have swore I answered this but maybe not. Our cases are very similar, as I also had a brainstem CM removed. My balance was also affected as I lost #6 nerve on left side. The three suggestions I can offer are unweighted therapy like in a swimming pool. Once you are walking balance was increased by walking backwards. And I have recently started wearing heeled shoes like cowboy boots which keeps me on the balls of my feet more.

I found stairs/stair master one of the best exercises. And early on used a litegate? Harness for safer movement before my therapies ran out.

Started in a wheel chair. Then a walker then a rolling walker then a cane. We are closing in on one year mark and I can kind of walk on my own like a toddler. I pushed and when I got comfortable with each device I switched to less support.