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AVM Survivors Network

Cerebellum bleed advice please


#1

Hi,
I have posted a few times so I’m sorry if you have read and replied before.
1st September places me 15 months on from the rebleed in my cerebellum. The brain is still not content as it’s still juddering about, mainly at the back where the damage is. My physio feels its due to sensory information being blocked from its destination and lets off this sensation… It’s trying to reboot around the damage. I’m still waiting on the left eye and balance to correct. When I say waiting on, don’t interpret it in a way that I’m sitting around with my watch… I can walk but not independently, I always require someone’s arm to link… Advice please needed. I like to think a domino effect will happen. Eyes correct, then balance, then walking… it does really feel like a waiting game. I also know that each individual is unique to the healing process.
Please help :blush:


#2

So sorry to hear about your issues. I had a craniotomy and resection of an avm on my cerebellum six months ago. When I move my head around it feels like my brain is spinning inside my head. It’s getting better but slowly. Then I feel all fuzzy and my balance is even worse.
I’m also hoping it gets better just by my going about my life and doing what I can.
Have you tried a vestibular specialist? That’s my plan if this isn’t gone by 12-18 months


#3

Thank you for replying. I had strange brain sensations too. It was like it was in water at times and I would feel it rocking back and forth. All these feelings have calmed right down now I’m pleased to say. I think I would be concerned if they hadn’t. I wish you all the best in your recovery :blush: oh I have asked about the vestibular system when seeing a neurologist and they seem to think it’s all brain related, my symptoms that is. I am having neuro physio at the moment who is touching on the vestibular system as they have an interest in that field. Thanks


#4

This reply is for both of you, Cornish and Canrd. I had an AVM on my cerebellum that started bleeding 6 years ago. I had a craniotomy and the nidus was removed surgically.
It was an emergency surgery and I would have died without it. I was very sick and nauseated for a good six months afterwards, and periodically for another year. I had no appetite and had a hard time keeping food down. Everyone’s experience will be different, but I’ve compared the experience to having a bad flu or being constantly sea sick. My balance was very bad and needed a walker. Even standing on a sloping driveway would give me trouble.
That seems like such a long time ago now, but 6 years is not that long.
Vestibular balance issues are completely different from what we have, since that involves the inner ear and ancillary components. The same sorts of physical therapy will be helpful, though. If it challenges your balance, it is a good thing in my view. I expect the people involved in vestibular balance therapies would discourage you from making use of their skills. Even though balance issues are from a different source, the physical therapies will be good for you–tell them that. I got physical therapy aimed at my cerebellar issues, but from what I know, there are a lot of similarities. A vestibular specialist can still be very helpful.
I’ve come a long way, and most would regard me as almost fully recovered. Here is what is still with me:
Balance is still slightly compromised, and I should never ride a bicycle or motorcycle, or climb a tall ladder. Sometimes I make a misstep and have to regain footing, but it is minor. I have to be careful when I run. But, I have never fallen since the immediate 6 months or so after the event. These are trivial problems, though.
My speech is sometimes affected, especially when I am tired. In such moments, it sounds to me like I am a little drunk. Alcohol affects the cerebellum, so it is natural that speech would be affected in this way.
My short-term memory is a bit worse, not by much, but I do notice it.
Sometimes, I don’t feel like I am as smart as I was before, but I might be wrong there. This is not as clear-cut as the previous issues.

My neurologist once said that any deficits I still have after a year will probably stay with me forever, but I feel like I improved quite a bit for the year or so after that milestone, so the improvement will continue.
My brief advice:
Pay attention to nutrition and sleep. Make sure you are taking care of yourself in these regards.
Challenge your balance deficits, since that is how these will improve. If an activity makes you sick and dizzy, try it again. Perhaps at a lower level, but try it again.
Do exercise and especially walking. My recovery really took off when I started going to the gym and doing what I could. I went everyday, starting about 7-8 months after the event.
Now, my friends, there are very few people that understand what you are going through better than I do. No one has more compassion for your troubles than I do. This is rare, but others have been there. Depression is also common in the aftermath of this–I know this very well. Please contact me whenever you wish.


#5

Thank you for your reply. It’s funny that you mention the drive concern as I have this to. I also have a slurry speech when tired. I can address this later on. At the moment I’m just concentrating on my independent walking and balance :blush: I found it very informative your reply so thank you for taking the time.
Jo


#6

Thanks so much for your thorough reply.
It’s especially nice to hear that you have continued to improve. It will be six months for me tomorrow. It feels like forever and I must admit it’s been crazy hard.
I’ve felt all of the things you’ve described, including the depression. At least I’m getting better week by week.
Thanks also for the advice to keep trying things that make me dizzy. I’ve had that thought and it’s good to know it helped you. Plus I can try some things I enjoy and call it therapy.
Carol


#7

Best Wishes to you, Jo! There is one other thing that is still with me and I should have added to the list. I wrote about it elsewhere on this site, but I cry easily now. Who knows why the bleed affected me in this way? My doctors were often puzzled at details of my problems in the aftermath, and I don’t think they would have an answer here either. I have not seen them in a long time now, otherwise I would definitely ask them. Anyway, you may have idiosyncratic issues afterwards that doctors may have a hard time explaining. It’s the brain, if the blood goes a millimeter one direction or another, there will be different effects. But, you are not alone in this. I’ve been there. We both made it and are still here!
Tom


#8

Hello, Carol! I know, what you wrote brings back so many memories of that time. I was so miserable. No matter how bad things may seem, I’ve probably been there. Activity and action help. Laying on the couch being sick was all I could do at some points, thinking my life was over. I had to lay on my right side always. Somehow that was more comforting and soothing than laying in any other position. I felt less sick, and could keep food down more easily. My neurologist had no explanation for it, but it was true. I lay on my right side so much that my ear would bleed and get sore from being on the pillow so much. Anyway, I needed to get up, grab the walker, and move. So, don’t make the same mistake I made in those days. Others, like me, have been through this, and you are not alone.
Tom