Arterio Venous Malformation and deafness

Melbury25
Melbury25 Online Community Member Posts: 4 Listener
edited October 2021 in Rare, invisible, and undiagnosed conditions
Hello

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?









Comments

  • Sandy_123
    Sandy_123 Scope Member Posts: 60,781 Championing
    Hi @Melbury25 welcome to the forum sorry I can't give you the answers you want, @woodbine might be able to give you some advice.
  • angel123x
    angel123x Online Community Member Posts: 5 Listener
    edited April 2021

    Hi there! I’d really appreciate it if you would share or donate to this GoFundMe, Brain Avm rupture - Stroke at 21 - He deserves your love and support (Removed, crowdfunding is not allowed on the community)

  • Melbury25
    Melbury25 Online Community Member Posts: 4 Listener
    Hi

    I will share this of course.  I'm so sorry to read this, it can be so devastating even to find out about an AVM let alone to have this happen.  How is he now?  Please give him love and every hope for him.
  • angel123x
    angel123x Online Community Member Posts: 5 Listener
    Thank you so much! It would mean a lot if the link could be shared with others to help. 

    He’s stable but no movement or speech at the moment. 

    Please keep him in your thoughts and prayers xx

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