First Neuro Consult

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I have my first Neuro Consult next week since diagnosis. Is there any recommended questions you would ask? As yet I have no ideamof a treatment plan although ENT initially said an op or radiotherapy. 

  • HI ThermanMerman

    There are no hard and fast rules about what to ask as everyone is unique here. The key is to ask about all the things you are perhaps anxious about, anything that's important to you.

    At my husband's first appointment with the neurosurgeon, he went over everything step by step. These guys are the experts so they pre-empt the most obvious questions.  Write all your questions, fears, concerns down and take those notes and a pen with you. The notes will keep you on track in case you forget to ask something and they spare paper will let you jot down notes about what you are being told. These early appointments can be a little overwhelming so don't assume you'll remember to ask everything.

    As best you can, make sure you understand everything you're told before you leave. Remember there is no such thing as a silly question here.

    I'm sure others around here will add to these suggestions.

    Stay calm. Stay strong and stay positive.

    love n hugs

    Wee Me xx

    Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm

  • Thank you lovely. You are right. I am sure they will let me know. Im hoping to take a friend with me to write stuff down and ask questions as well. There’s been such a lack of information so far I have no idea and I am not going to google! X

  • Hi ThermanMerman,

    Welcome to a group that nobody really what's to join :)

    Some thoughts for your first appointment:

    • Ideally have somebody with you. Spouse, friend, etc It's reassuring and they may be able to remember bits you forget.
    • Write down a list of what you want to say then you can tick things off as you go and don't miss things out.
    • You may well have a Macmillan nurse sitting in on the meeting to help out.
    • If the doctor mentions something that you do not understand - e.g. the name of a drug you may need to take - ask them to write it down for you so you can find out about it later - don't google it right now!
    • I got a pen that records the conversation as you go on and what you write down as well, The doctor shouldn't mind. One of the problems I have now is that my short time memory is rubbish - and dyslexic doesn't help - so If I can listen to the conversation afterwards as well things are easier.

    Having read things through I see that there is some repetition in what I and Wee Me have said - I was writing at the same time but I'm a tad slower.

    The last thing - relax! You should find that the doctor is really nice. They have an idea of what you are going through.

    ... and another "last thing" - let us know how things go.


  • As Wee Me said there are no rules

    my neuro oncologist is great and preempted a lot 

    Have you had a scan yet? That should direct a treatment plan 

    my MRI showed my tumour was inoperable as it’s on the brain stem so I had radiotherapy and chemotherapy 

    It was suggested to me to ask whether treatment was palliative or curative - then ask prognosis from there

    personally as soon as I knew mine isn’t curable I didn’t want a time prognosis but some people do