Congratulations on being more than 10 years past your rupture. My daughter had a cerebellar AVM rupture 2.5 years ago at age 10. We had no idea that she had this condition until the rupture. It was very bad. She’s had 2 craniotomies and the AVM is considered gone. Do you still get follow up? How long did it take you to regain most of your functions? What are your biggest struggles at this point. I worry about her future a lot.
AVM update, I’m 58 now, I was a Delta Captain, cleared for takeoff when I had a bleeding Cerebellum AVM Dec,7th, 2017. They got me off the aircraft, a Doc opened up my brain and fixed it, I woke up in the hospital, got off the feeding tube, and started rehab a few weeks later. I stopped rehab a year later. My right side from my shoulder to my foot feel tight and have a pins and needles feeling, especially in my joints. I got rid of my vertigo after doing a 5 minute procedure on you tube, but immediately got my tinnitus back? I still have double vision which I wear prism glasses for. You wouldn’t think I had an AVM to look at me but my balance is not good, I haven’t gone to the gym since the operation and my golf game needs work. I can’t get my FAA license with my problems so I am considered disabled.
Dday, I remember reading your posts before. I had my cerebellum bleed December 22 of 2017. Mine was not as dramatic though, just the massive headache first thing in the morning. The surgeon tried to embolise it, but I started hemorrhaging so he did a craniotomy to surgically remove the avm. Then I developed hydrocephalus and they put in a shunt. It’s been a long a difficult road. I tried the YouTube video for my vertigo but it didn’t help at all. I still have the dizziness now, and although it’s much better I am sick and tired of it. Not to mention the accompanying motion sickness.
Most people who see me walking around have no idea that anything happened to me, but my balance sucks and my left hand is pretty useless.
I’m doing my best to adjust to this new life. Grateful for my independence and doing all that I am able to do. Just trying to hang in there I guess
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I just went through a bout of acute vertigo too. My cerebellum bleed was in 2015, four and a half years now. Incredibly lucky to be in the right place at the right time and with the right people - my teenager insisted I go to the ER, even though I thought I was having a bad migraine and thought an urgent care place could help me.
Anyway, the embolization knocked out a lot of my balance and coordination and sense of position, but I got back 98% of it with good therapy. Then a couple of weeks ago, I woke up and the room spun in a way I hadn’t dealt with for a few years. I was fine once my head “settled”, as long as I kept it vertical and didn’t move it too fast or into certain positions. That night, I tried to get up and completely lost my balance and fell, luckily against the bed frame so I only bruised my back. My husband freaked out and thought I was having another bleed.
But it didn’t feel the same, and a friend had gone through this too, so I went to the primary office and the doctor did indeed diagnose me with Benign Paroxysmal Positional Vertigo (BPPV). There’s a simple test, the Dix-Hallpike test, involving head movements and someone watching your eye movements, that can pinpoint where the misplaced canaliths are and which maneuver will move them out of the way until they reabsorb (which takes a few weeks).
I realized that they had done those diagnostic tests on me in the hospital during my rehab, just in case that was contributing to the vertigo.
So, the doctor told me to google Eply maneuver instead of doing it himself (insert eye-roll here!). I did, and it did help immediately, but not completely. One part of it is to keep your head vertical for the rest of the day, sleep in a recliner if you can, etc. I did my best but I still had residual vertigo with some movements - especially lying down - and an overall “floaty” feeling that was sadly familiar.
Much of my physical therapy was exercises to strengthen my eye muscles and to train my eyes and brain to work together. I have a whole notebook of those exercises. I’m wondering if I’ve just let some of that slack off since I do still have issue with certain head movements - yoga is out, fishing the cat from under the bed likewise!. Gardening has been very difficult since I had the stroke but I’m a lot more able than I was say a couple of years ago. So anyway, I avoid those head movements that throw me off, and I suspect my eye muscles in particular have gotten weaker again.
Basically, that’s two non-brain systems that have contributed to balance issues.
Something that helped me immensely with balance was water therapy, first in rehab and then later at the local Y, which has what I call “old lady” classes designed for people suffering from arthritis, recovering from hip surgery, etc. Water slows down the reaction time needed, and you keep your head out of the water, so it stays vertical and you can keep your glasses on, perfect for what I needed. I’m planning to return to those classes, and maybe the chair exercise class, starting this week.
Dday103, I’ve had tinnitus (constant, not pulsing) since my stroke at least. It’s not terrible and sometimes it’s worse and sometimes I don’t really notice it. It has seemed worse since my BPPV episode, but I’m not sure if it really is worse or it’s just that I’m paying more attention. It bothered me a LOT for a few days.
Yes, the eye exercises are what I’m doing now. It’s helping a lot.
They tested me for bppv and I was negative. I went to specialist ear nose throat doctor and he said my vertigo was from the craniotomy that removed my avm.
I also love the pool. It’s great therapy for anyone with neurological issues.
Just hoping the eye stability exercises continue to help me improve.
How long did it take after you had the stroke for you to get to 98%?
They told me that recovery would be a curve - steep at first and then slower and slower. That certainly matched my experience. What surprised me is how I did continue to get better, even when it was too slow to notice. I’d realize that I could do something that I couldn’t the month before, or six months before, or even a year before.
Driving, brushing my teeth, attempting to do yoga, vacuuming under the bed - these are all activities where I could see improvements well after a year, but which I still have issues with. I finally got a car with a backup camera and that really helped.
Three and a half years out I’m still seeing improvements. A few weeks ago when leaving a chamber concert, my husband remarked that unlike the last time we were in that hall, exactly a year ago, I was just touching his arm to get my bearings, instead of hanging on for dear life. Going up stairs in a crowd, where you can’t see any fixed objects, just swaying backs of other people, is really hard if you rely more on your visual system for balance.
Reading is one area where I’d say I’m not up to 98%. Part of that is that I’ve had to learn to read again - not that I had to learn letters or words or anything like that. It’s that I’ve always read by “seeing” several lines of text at once and processing them sort of two-dimensionally, if that makes any sense. More like looking at a painting than hearing someone recite a poem. Having to process things more sequentially has been really difficult for me. So, it’s hard for me to compare how well I’m really doing in that department. I can read, and I can read books. But I can’t read nearly as fast as I used to and that makes me frustrated. I listen to podcasts now instead of reading before bed.
Bottom line: I’d say generally it was more in the years than the months range to get back to 98% on most things, but believe it or not I’m still seeing improvement here and there.
I think I’m motivating myself to get back to doing more eye exercises.
Thanks, that’s encouraging. I started the vestibular rehab about two months ago, but all along I’ve been just going about doing whatever I can. I’d get dizzy and then rest until it went away. Slowly increasing what I’m doing. It’s all definitely working,but it’s slow and that part is frustrating. I just keep telling myself, this whole recovery thing is a marathon, not a sprint. Some days it gets old
Hang in there! It is amazing that we are still around. We would probably be pushing up daises 30 years ago! The good part is I can blame everything from missing anniversaries or birthdays on my brain operation! I still have double vision without my prism glasses on, and it blows wearing glasses, I never have before, my eyes are 20x20 still but I see two of everything, objects are getting closer and a few times in the morning I swear my vision is back to normal, that only has lasted a few seconds though. I have to wear prism glasses so my brain makes the view normal and I get sick to my stomach if I don’t wear my glasses. It is no fun switching from outside sunglasses to inside glasses all day. I can drive, and do most stuff but I get winded more easily, I still don’t have my full balance back, I still get spins when I look up or lay down. As others have said, just fill your time with what you can do well!
It has been QUITE A BIT of time since I made entries here! I forgot about the special section for those of us with cerebellar AVMs. I can relate to much of what everyone has said. All I have to say is that with the passing of time, and some effort, many symptoms will ease. The vertigo/dizziness I once experienced is managed best by knowing which positions my brain does not tolerate well. No extension of my neck in bed… No looking under my bed or into cupboards low to the ground… No stretching up to look into high places… My reading is slower than it once was, too, as someone has mentioned. But, luckily, I am not in school any longer. (It was an issue in grad school!) Water exercise is helpful in so many ways. For me, simply taking a walk (post-op, many years ago, I had a very wide gait!), and HULA classes benefitted me so much that I am now performing with the others in my class! I joined the class initially because I thought it might aid in repairing my balance and coordination. It has, and I just ‘opt out’ of any dances that overtax me.
I’d love to hear from any of you who have contributed to this page. I hope all of you have come far in your journeys!
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This is fantastic!
It’s great to hear from you and great that you sound on top of things. I’m sorry I missed this for most of April!
I think I set up the cerebellum & brainstem category a few years ago but it might not have existed when you first started this conversation! It’s really good to know that for those people with AVMs in some rather different parts of the brain and body that gathering together the stories is useful. The worries that people in this group/category have are of a kind and the treatment options often reduced, so I thought it helpful to bring them together. I’m glad it helps.
Oh, and do join the BrainCerebellum group because doing so means you get notifications of new topics in this category.
Very best wishes to you!
Richard
Hello. I havent text anything here for a bit. Ive been recovering from my craineotomy. It was december 9th. So almost 5 mths. Im doing really well i feel. Im doing some cooking, vaccuming, dishes, but not everyday. Some days are lazy days but i feel just fine about that. The most exciting thing is when i drove about 3 weeks ago. I felt like i always did before my stroke. It made me want to drive all day. My sister went with me so i had proof i did well!! It was so freeing and so awesome. I dont seem to have the nerve to get in my car and just drive off tho. Im wondering if its because i have a commercial drivers license and 30 years of training and im questioning myself about driving after head surgery. Lol. Im not really sure. I felt better driving than i do anything else. It will come with time i know. Im still a bit slow about walking, i just dont want to fall. I realize im so afraid of all this happening again. I dont want to live in fear of it. I am going to start some counseling for the trauma soon. Ive been trying to find a good counselor. PTSD has always been a part of me from childhood so this stuff brought some fear. Its all pretty traumatic. Im about done with vestibular therapy. She feels im well enough to be done. Which means im getting well! Thats a great thing. Just wanted to touch you all and let u know how my vermis cellerbelum is going. Its nice to lay on my back again. Feels so much better. Healing slowly but surely. I can relate to how u may not see a change and then a week or a month later u realize u couldnt do this last mth. I can bend over to pull weeds again! But im going to try to sit to do it more for now. Happy days eveyone.
Debbie
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Thank you so much, Dick D. This area of the brain (cerebellum) is often overlooked, thus much of what is offered for rehab is, too, like you mentioned. Being an R.N., I initiated some research on cerebellar function. I even went to the medical library at Stanford University to locate and read a specialized journal. Then, I later tailored my own ‘plan of care’. That’s where hula comes in. Other physical activities were out of the question, given my limitations in balance and all. Hula (not to be confused with other Polynesian dancing), affords me the opportunity to enjoy the fluidity and joy of dance, while improving my balance, co-ordination, and memory.
I hope others find the key to their improvement as I have.
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That sounds fun lifisgood! I could think about doing that. Enjoy!
Check it out. Some hula classes are more traditional, but there are some that exist to develop a greater appreciation for the hula and are more forgiving. I began classes at a less formal, recreation center. Now, I hula with a “halau” (school). 
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