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Arterio Venous Malformation and deafness
I'm a very new member hoping this is where I should be.
In the 1990s i was diagnosed with a congenital brain AVM, found when having a hearing test in the mid 1990s.. In 2013 I suffered the first of seizures which were diagnosed as secondary to the AVM. Any alteration in my meds changes my moods, causes panic attacks and I'm now recorded as having anxiety disorder I can't say that anything other than 'I hope' , there is no certainty to anything. None of these are apparent but I feel obligated to warn people about the epilepsy. Most have preconceived ideas or are alarmed and sometimes distance themselves.
If this seems one long moan and a lot of self pity,of course it is. But It does seem that because epilepsy is so well known now it becomes just a note on records and a repeat prescription where the GP practice is concerned and in my situation requests for advice can't be met. There is no help to be found online and too many neurologists are so overwhelmed.
There have to be others who can't find the information they need. Indignantly, I'd like to take some action to bring together others in a similar case find and make the answers to such questions clear and available.
And just being selfish, does anyone know if there is any risk attached to hearing tests?
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