I think half the problem I have is that the docs thing because its been a long time since my surgery I should be back to being ok, and they don't listen. I'm not I feel as if I'm getting worse
Nobody will listen: I think half the problem I have... - Headway
Nobody will listen
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Chelle, I wonder whether, because your injury was 20 years ago when brain injury after-effects weren't understood or explained too well, you weren't given the true facts.
We have a common expression...……..'The New Me', which applies to most if not all brain injury survivors after any type of brain injury. Those expecting a full recovery are seriously misguided and the best route to peace of mind is acceptance of our new status, warts & all.
Most doctors (other than neurologists) haven't learned the basics of brain injury after-effects and how life changing AND life-long they usually are. Have you read the Headway literature explaining different conditions and treatments/procedures and associated symptoms ? You could also phone the helpline for extra advice & support ; the no is 0808 800 2244 (office hours / free calls).
I'm seven years on from a bleed on the brain and, though I still allow myself to lament the 'old days' now & again, I've learned to adapt to a new life and to accommodate (mostly) the fatigue/dizziness/mood swings etc....
I was fortunate enough to be made aware of the possible lasting effects before leaving hospital and, though I was determined to prove them wrong, I had to concede after a year or two that life was, and would continue to be, very different.
If you haven't already had neuro-psychotherapy, I suggest you ask your GP for a referral, with help from Headway if necessary.
Wishing you better days ahead Chelle. Cat x
i was told nothing cat. like you i my bi was nearly 7yrs ( feb 12 ) ago, i was told nothing, when i asked about the numbness on my leftside the reply was .......how long is a piece of string.
Oh yes, that was basically what I was told Steve. But by being told that 'No one can predict the long term effects' and to 'Prepare for disappointment', at least I was forewarned so haven't spent the last 7 years feeling let down or bitter...….just frustrated and saddened at times with my diminished abilities.
It seems the surgeons are highly skilled at addressing immediate problems, but I'm not sure they'll ever have the means to foresee eventual outcomes in such complex organs as our brains. x