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.
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
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 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
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.
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 I found it very informative your reply so thank you for taking the time.
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.
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!
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.
@Cancrd @multistats Could you tell me the neurosurgeon that performed your resection? My 9 year old son had an AVM rupture in his cerebellum on December 3rd, 2019. It has been a long 3 months but he has made an astonishing recovery! He is fully walking, talking, and eating on his own. He does experience a lot random vomiting as well. Doctors at first told us that it was operable but they wanted to wait a few months for his brain to heal and settle down, so they had scheduled an angiogram/embolization and surgery for the beginning of February. So in February they did the angiogram and said that they were only able to embolize about 60-70% of it and needed to do another angio/embolization before the surgery, so they scheduled another angio and surgery for last week (beginning of March). He had the angio done on Wednesday of last week and everything went well and they said that they were able to get it about 95-99% embolized. While we were recovering, our neurosurgeon came in and said that he did some research and saw that the mortality/morbidity rate in an AVM resection in the posterior fossa and cerebellum was about 20% which was more than he originally thought, so he started to tell us that he thinks we should now search for a neurosurgeon that has more experience with removing posterior fossa/cerebellum AVM’S and cancelled our surgery that was scheduled for last Thursday… so now we are heartbroken as we thought that this nightmare was finally going to be over and we would be recovering and moving past all of this…
I’m so sorry to hear about your son and this surgery issue. My surgery was done by Jonathan Lena at the medical university of South Carolina in Charleston. I’ve been very happy with the care I received there.
Several people on this site have said it’s possible to get remote second opinions from the barrow institute. I think you have to send them the angiogram images? Worth a search on this site.
I remember how frightening this all was, I hope you can find a path forward that you feel comfortable with.
Hello, Cera! I am sorry to hear about the cancelled surgery and the ambiguity about what to do next. I am amazed that he does not have a line on experienced neurosurgeon–he basically said, “Sorry, can’t help you, goodbye”. I thought doctors will always referring patients to those who can help their patient. He’s leaving the search up to you–I don’t know what more to say about that. Is there anyone on the neurosurgery staff there that has a reference? I’m in Minnesota, so this doctor is far from you. He is Dr. Robert Roach, and I am forever grateful to him. Now, he did the surgery. The oversight of my situation was done by Dr. Ivan Brodsky who was not part of the surgery. I believe neurosurgeons have to be under a certain age, so he is over that limit. But he is very experienced and knowledgeable, and will always have a high regard for him. I’m sure he would have the names of surgeons who can help. Best wishes and let me know how it goes.
sorry to hear about your son but whatcha amazing recovery , Would you know if you had a bleed / stroke my surgeon said you may not even know if you’ve had a stroke as it could be mild , I have quite slurred speech sometimes almost like I’ve drank alcohol my mouth goes to the side a bit I had a lot of muscle weakness legs was the worst felt like I could hardly get them upstairs
I had to use a walker, then a cane for quite awhile.
They helped me feel more stable.
God bless you.