I’m three years on from my AVM bleed within my cerebellum. I’ve had a very positive enthusiastic outlook with the situation. Up to now I’m starting to feel more low mood as it’s just ongoing. Due to not having my independence due to my poor mobility, I think it all starting to wear me down. I had a bad right leg which I have put down to it compensating for my left leg as this is my effected leg. I’m not sure when it occurred though they say I had a stroke. I can only assume this occurred when I was in an induced coma as I have no recollection of this event. It’s not left me with full post symptoms, I just have a weaker left side. My walking is improving, though after three years of trying every day it just really wears you down. After all my researching I have not found anyone with similar to myself. I work everyday on my balance too as this has been taken back to scratch. Does anyone have any tips or stories which maybe of benefit to myself? This is the part I usually got no response as no one seems to have contended this to this extreme level. The one acknowledgement I make to myself daily is that this episode in my life is not permanent. I can and I will make it through it’s hardship. Thank you for reading. Jo
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Cornishwaves247
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Hi Jo, I have not experienced quite the same journey, and I don't think that you will necessarily find someone with the same experience.
I think you need to talk to your Dr about your mood, if you are struggling with this it will magnify any other problems you are having.
There is always hope for a good recovery, but when it comes to the brain it is unlike any other damage you might experience.
Something I struggled with, and still do, is the new me. I'm nine years on, and I suppose the first five I was in total deniel, even knowing from my professional knowledge, nurses are the hardest patients.
Sometimes it isn't about surrender, but accepting that a different angle of attack is required.
Get your mood stabilised, and then think about the next move.
Anniversaries seem to invite an appraisal of progress but often the improvements are so subtle that the lack of something more significant can be disappointing and even depressing. It concerns me that these 'milestones' can create resistance to accepting the longer term issues, especially the more incapacitating ones.
Like 'Pairofboots' I wonder whether counselling and/or medication might help lift your depression and allow you to tackle your challenges with a lighter heart rather than metaphorically wading through treacle.
See your GP or neuro team. You've worked so hard to achieve your improvements, but you're tired and dispirited and need help in getting your motivation back on track. Please ask for help m'love.
Thank you both for your replies.. I’m not entirely sure it’s a case of depression with myself. I feel it more of a worn out emotion of practicing everyday for three years. I guess after a length of time it’s going to take toll. For me there is no route for adapting. I seem to be one of those lucky ones who has to wait it out. The injured section of the brain is so immensely powerful it controls my actions. If it wishes for me to venture left while attempting a straight line I go left. I can’t override it’s thought process. This is the reason behind me not being able to use a form of walking aid. It’s simply no support, only another being is able to assist me. I really just wish the brain sensations would stop or at least calm to a minimal. I don’t feel depressed with my situation I’m more worn out by it... I’m usually very good at turning the frown upside down as they say. Though this time it’s slowly getting the better of me. I feel that I require a physical improvement more than a mental improvement, if that makes sense.. I’m not in anyway ungrateful for your suggestions, I very much appreciate the time you taken to read and respond to my post. Thank you
Hiya! I’ll reply to you fully later, should I forget however, please chase me by direct message if you like.
I had a midline cerebellar haemorrhage 7.5 years ago together with hydrocephalus & ventriculitis (similar to meningitis) plus kidney failure & adrenal failure. I’m now adrenal insufficient too & know how you feel about what you said. As my bleed was midline I couldn’t even sit up initially without falling, I had to have a seatbelt in a chair!! Hated it. I was very active prior into all sorts of sports..I literallystarted again. My left side is affected in terms of coordination & my balance is shocking. I exercise everyday however & am where I never imagined I could be... keep on keeping on! You owe it to yourself.
Me again! For me the hardest part was overcoming my newly acquired automatic fear of falling over. This made me so tense...I fell over a lot at first. I was in a rush to get back to where I was & believed I could do it. I even thought I’d be back doing judo in no time. I couldn’t stand up properly let alone compete!! Seems ridiculous now. I’m a stubborn sort so I plodded in doing everything suggested & extra to get my fitness back. A huge step forward came when I started to learn/practice tai chi...I still do it daily 7 years on. It changed my life...despite feeling insulted at first!! I could write all day tbh but I think the key thing is to find your own constant...an interest you love & will do often. Once you find it you’ll know. An OT constantly reminded me to ‘use it or lose it’... even when things feel awkward/hard keep on doing them... I love my life more now than I ever did if I’m honest. I take nothing for granted & I’m far more grateful for everyday things.
I have an AVM too - bled 8 years ago (still resides in my brain - which sucks). My bleed didn't affect the cerebellum, mine way in the parietal and occipital lobe, so all I can say is that my symptoms have fastly improved - although my vision hasn't returned on my right peripheral and I have epilepsy along with just other symptoms that I can't really explain.
Only drawing from the principal that time = improvement in my experience, I think it can improve. Keep at it, and exercise that bit of your brain!
Thank you for sharing. I’m hoping for more improvements 😊 You right in stating exercise that section of brain, something I have tried to keep stimulated from the beginning
I “HAD” an AVM in the brainstem which burst causing a brain haemorrhage.. 1 year and 22 days in hospital.. I was “locked in” after the initial bleed but slowly awoke, slowly gained movement (still not 100%) slowly recovered speech (still not 100%) but from being locked in to being able to walk (with walking stick)and talk and actually to be alive I’m very thankful to all involved in my recovery.
I had a time where I had plateau in my recovery I learnt to take notice and to accept that I was living with disabilities and reached out to PARS who got me into a balance and exercise class which eventually got me into the gym and helped me with my self esteem/confidence.. I found it really helped me in many ways.
My advice would be to try reach out to groups/classes.. but I’m only speaking from my side and my experiences which helped me out it could be different for yourself..
Thank you. I’m hoping my cerebellum settles down enough to enable me to adapt around my new limitations. Not sure if you had similar as in the brain continually feels as though it’s bouncing around in an unsettled manner (only in the injured section.) I was similar to yourself as in sitting was extremely hard. The seat belt sounded like a good option. Thankfully I’m passed that minor hiccup. I have plenty more to get passed yet mind... My AVM is pretty much on the brain stem though in my cerebellum. I can imagine we may have contended similar. Thank you for sharing. I really appreciate it. Jo
Hi. This is just a message to say thank you for sharing your story. I can’t offer any words of wisdom, but I want you to know you have brought me a lot of comfort. My parter suffered a very similar situation his AVM ruptured and resulted in a massive bleed a few weeks ago. This then clogged and they had to remove the AVM and the clot but this was in the area that operates motor function. There has been a lot of swelling and he’s currently in a coma where he opens his eyes but not much more. You have given me hope that we are not alone in what my partner is going through. I hope you continue to find the strength that you need.
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3 years
3 years since our world turned upside down
First post in around two years
A year of post concussion syndrome 
Head Injury 3 years ago
