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Obstructive Hydrocephalus

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Narvia
Narvia Scope Member Posts: 7 Connected
in Physical and neurological impairments
My neurosurgeon has diagnosed me with 'pre hydrocephalus'. It's on its way. Saw the annual MRI scan and the 1.9 cm pineal cyst from 2018 has grown beginning to block and ventricles have begun to swell bigger. 
Emotionally, it's a lot. Is it better to know this ahead of time? Knowing this is most likely my future, I feel like racing against time which is upsetting. 
I already suffer chronic and hemiplegic migraines and the symptoms from those mix with the symptoms of hydrocephalus so can't be sure when I will no longer be 'pre'.
Anyone going through something similar?
Thanks for reading.

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Comments

  • Alex_Alumni
    Alex_Alumni Scope alumni Posts: 7,562 Disability Gamechanger
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    Thanks for reaching out about your diagnosis @Narvia I can imagine it is a lot to go through emotionally, and I hope the community here can help you feel supported and listened to. 

    Do you feel like you're getting enough support from any specialists or GPs involved in your care?

    It can be helpful to seek out reassurance from someone going through a similar experience, so taking steps to do this is a positive thing. To help our members share their thoughts, I've marked this post as unanswered for now. 

    It can also be helpful to focus on looking after your mental health, do you have anything you like to do to destress, or that helps to take your mind off things for a bit?

    If you feel we can help support you further with anything, even if it's just a chat, let us know :)

    Alex
    Online Community Coordinator
    Scope

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  • Narvia
    Narvia Scope Member Posts: 7 Connected
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    @Alex_Scope Thanks for the support. I'll be okay. Plenty of people supporting me, just need info as I find it quite comforting doing research etc.
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  • Alex_Alumni
    Alex_Alumni Scope alumni Posts: 7,562 Disability Gamechanger
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    That's completely understandable :) I'm glad you've got good support around you as well. 

    What sorts of things would you like to know more about, in terms of doing your research?
    Online Community Coordinator
    Scope

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  • Narvia
    Narvia Scope Member Posts: 7 Connected
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    @Alex_Scope Just research on my diagnosis. 
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  • L_Volunteer
    L_Volunteer Community Volunteer Adviser, Scope Member Posts: 7,983 Disability Gamechanger
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    Thanks for sharing this with us @Narvia. I can hear how you would like research on your diagnosis.

    Is there a particular part of your diagnosis you would like research on? I am just trying to make sure we provide you with the support you are looking for and deserve  :)
    Community Volunteer Adviser with professional knowledge of education, special educational needs and disabilities and EHCP's. Pronouns: She/her. 

    Please note: if I use the online community outside of its hours of administration, I am doing so in a personal capacity only.
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