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Diagnosis concerns

gwen4dive
gwen4dive Member Posts: 1 Listener
Follow the diagnosis in mid September 2011, I had decompression surgery in Jan 2012. At my 6 week check up I asked the surgeon if I had to declare that I had the diagnosis and the surgery? I was told that I had no reason to declare the Arnold Chiari  as  had been sorted with the decompression surgery. 
I left the out patients dept more confused than ever.
Can anyone enlighten me to the right thing to do??

Thank you in advance


Comments

  • JennysDad
    JennysDad Member Posts: 2,299 Disability Gamechanger
    Hello @gwen4dive and a warm welcome to the community. I'm afraid a proper answer for you requires somebody with more knowledge than I have, but others will be in touch with you as soon as possible.
    It might help if we could clarify things a little - and I must ask you to forgive me if I seem a bit dim about this - but can I ask to whom you would be thinking of 'declaring' your Chiari? Is this benefits related? From the little I've had time to read so far it appears that decompression surgery may or may not succeed in alleviating the problem, so is your condition still a problem for you (I'm assuming it is) and could you perhaps tell us a little more about how it affects you?
    Here, listening and hoping we can be of help to you,
    Richard

  • steve51
    steve51 Member Posts: 7,154 Disability Gamechanger
    Hi @gwen4dive

    Good Day my Friend.

    It’s Great to meet you today.

    I have myself got a “brain malformation”

    The only people that I have had to tell is:

    1.Work if you are employed??

    2. DWP for “Benefits” if you are “claiming” any ???

    3.“DVLA” if you are driving still ?????

    Those are the first things that come to mind.

    You may find that the other members might add to these.

    Many thanks


  • Pippa_Alumni
    Pippa_Alumni Scope alumni Posts: 5,798 Disability Gamechanger
    Hi @gwen4dive, welcome to the community! Great to have you here.

    This sounds like a complicated issue, and it certainly does make sense to have evidence that you have had the surgery. I wonder if it might be worth seeing a different medical professional involved in your care to see if they can clarify why this has happened?
  • atlas46
    atlas46 Member Posts: 826 Pioneering
    Hi Gwen

    I am sorry to learn your concerns about the registration.

    If I may, could I give my understanding of being on the registry.

    As you have Arnold Chaiari, the medical team treating you have to put your details on "rare diseases register".

    This is for use in medical research into rare medical conditions.

    I believe this is for entirely good reasons and would not mind for my details to be held.
  • atlas46
    atlas46 Member Posts: 826 Pioneering
    Hi again

    I should add if you do not want to be on the register, you can be taken off. Please contact The Rare Diseases Regitration Service.

    Hope this helps.

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