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AVM Survivors Network

Update on my Cerebellum bleed

#1

Hi all, it’s been a while since I have wrote about myself.
I am still struggling with my vision, walking and balance. I do feel that this year improvements are happening. My rebleed was in June 2017. Five months on from my radio static treatment.
The entire 2018 I had no independence and this year is looking very much the same so far.
2018 was super hard and I really really struggled. I think the brain must have still been quite swollen.
2019 the head feels slightly calmer and the sensations which it generates are becoming less. I have never experienced anything like what the brain generates sensation wise. I would continually feel the brain moving, it was beyond bizarre and quite depressing at the same time. You just want it to stop.
My message to all is that in my experience, time frames are only suggestions. June will mark two years and I’m only now feeling like improvements are happening. I’m hoping that by the end of the year my head will be still, my vision corrected and my walking that bit more stronger. Next year I will continue to build on what I have already achieved. I will not be at my final goal but will not be far off I hope. If anyone feels improvement is beyond slow you just have to keep going no matter how hard it gets. I have such strong enthusiasm for getting my independent walking back, that I just never give up. I just keep going no matter how tired I am from it all. I believe that it will improve, it’s beyond hard in contending with it but I just keep chipping away at it. I don’t know if I’m in denial of the situation but because I want it so badly I just keep going. So my message is improvements may not happen directly but they do definitely happen. My AVM bleed was deep within my cerebellum near the brain stem. No one has any advice on the condition. I have proven to be a real grey area. But I have never given up on my recovery. I would really dislike being told you have to be patient, as I just want to fix.
I wish you all the best in your recovery, x

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How is everyone doing so far?
#2

Amen! I entirely believe what you say and you are proof! The stories of slow improvements happening for a long time are abundant and while we always want faster, forward is forward! Its great to see this update and wishing you the best! Take Care, John.

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#3

Wow I can so relate to this! I had my bleed 3 years ago and just in August last year I started to feel better and that my brain was “calming down” its so difficult to explain this on someone on the outside…

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#4

Jo,

It’s great to hear you fighting so well! I’m properly in awe! I absolutely believe you will make it, just because of the conviction in your message to the world here.

Keep it up!

I’d like to move this to the cerebellum category so others in the same position might find your story and you can cheer them on.

You’re doing b r i l l i a n t l y.

Richard

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#5

Amazing! Keep up the fight and hope!! I’ve recently read “My Stroke of Insight” from Jill Bolte Taylor where she says she has seen improvements up to 8 years after her AVM rupture and bleeding. She mentioned tons of times how the 6-months “theory” of doctors for recovery is total bullocks. She did also mention the importance of always keep on trying and believing one can recover, whatever time it takes. You are one of such proofs! : )

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#6

I personally feel the loss of independence is far greater than the struggle to try and regain everything back. Having to learn patience has been my greatest struggle because I want recovery to happen now and faster. Like you, I felt no real improvements but then out of a sudden everything bunched up and I started doing things like before, like cooking. Even achieved the goal of going to a normal bathroom without the use of disability bars or my assistive devices!! I only need my afo and that’s it :slight_smile:
Progress is progress no matter how slow or small. It just takes a while to realize you’re far closer to the finish line than from when you started. I’m getting close to my 2 year anniversary over here and I still get my days when I feel like I have alot of recovery left.
My balance and walking isn’t the best but at least I’m walking!! Vision wise I had to go to my ophthalmologist to get my vision checked and rechecked. I wear glasses now and have been recommended lasik but after so many surgeries, I’d rather wait a bit lol!

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