My story is long and complicated (aren’t all of ours? ), so I’ll keep it short.
My AVM was discovered in September 2024 and I had three embolizations and one craniotomy in August 2025. I’m from Romania, but I stayed still in Germany, three and a half months, in a rehabilitation center. I am home since mid November. Recovery is going well, but I’m left with aphasia (manageable, but there’s still work to do), a limping right leg and a semi-functional right arm.
In two months, I will have a cranioplasty. Everyone tells me that incredible improvements can be seen after it.
My question is: is that true? I’m looking for information or personal experiences regarding the evolution of hemiparesis after a craniectomy. Can I hope for a normal life after cranioplasty?
Welcome! It sounds like you have had quite the challenges in the past 14 months. I’m quite different than you in treatment, mine was gamma knife. I did experience aphasia post bleed, and it still shows up a little when I’m really tired. I have adjusted and can usually compensate by using different words. Those close to be know it happens when something I say seems like an odd way to say it. I just travelled for 14 hours to spend the holidays with family, and it might show up a little this evening!
Recovery is a continuous process and not a straight line by any stretch of the imagination, forward is forward! Patience is key in recovery, and something most of us have room for improvement. You have been through a lot, and 4 months out from a craniotomy is not long. Are you working with a physiotherapist to help with the hemiparesis? Take Care, John.
Yes, I work with several therapists in a clinic and I do all sorts of exercises - assisted walking, mirror therapy, massage, kinetotherapy and so on. I feel alright, but the progress is so slow, it gets frustrating.
I’m assuming by cranioplasty that you’re talking about having a plate fitted to reduce atmospheric compression on your brain. There is an extreme example of this in the following video. I think it’s a fascinating documentary and key to Richard’s recovery is his cranioplasty. He doesn’t really start recovery until that is done:
I can’t speak for the cranioplasty, and I know that was your main focus here. However, I can address the other things. YES, a normal life is absolutely possible. I had a bleed in 2022, gamma knife radiation (so different treatment path), brain edema, all that stuff. I have my aphasia and I do stumble over my words still. Despite this, I hold my position as a professor in a college! I am known for my strong lectures, and I am known for going 3 hours for a lecture without a break. Outside of that, I am known for my metal working; welding, running machinery like lathes, mills, saws, small cranes, and so on.
Anyways, I’ll conclude all that. I’m just saying all of this to simply hopefully give you some spark to keep going and not worry about what the future might be. I still have some lasting problems from it all, but I see no reason for me to quit yet. Keep fighting, and keep up the good work you are doing so far! I wish you the best!!
), so I’ll keep it short.