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Terrified of the risks - brain surgery

Jamie10Jamie10 Member Posts: 4 Listener
edited June 2020 in Disabled people
My partner has a syrinx and is due to have brain surgery and is petrified of the risks. We have a young family and she is worried about side affects etc. Any help with this to ease her mind? 


  • steve51steve51 Member Posts: 7,175 Disability Gamechanger
    Hi @Jamie10

    Good Morning & Welcome.

    I am one of the Community Champion’s here at Scope.

    Yes I have had a number of “Brain Operations” since 1998 at the age of 32.

    Please please let me know if there’s anything that I can help you with?????


  • Jamie10Jamie10 Member Posts: 4 Listener
    Hi Steve,

    michelle is anxious and is worried that anything could happen, with this Syrinx removal? Have you had similar?
  • steve51steve51 Member Posts: 7,175 Disability Gamechanger
    Hi @Jamie10

    I have had 1 brain operation in Spain.

    There has been another 4 operations in this country.

    2 with “Glue”
    1 with “Radiation”
    1 with “Hyperbaric Oxygen” 

    Please let me know if you need any further help/ support????

  • emmarenshawemmarenshaw Member Posts: 712 Pioneering
    Hello @Jamie10 welcome to the community. So sorry to hear your partner is feeling anxious. I know it’s scary but know that we’re all here if you need our support. I’m also going to tag @Chloe_Scope to see if she can assist you with anything.
  • Jamie10Jamie10 Member Posts: 4 Listener
    The side affects like strokes, paralysis and memory loss are making her anxious and that it still may not help. Any support greatfully received 
  • Chloe_ScopeChloe_Scope Scope Posts: 10,653 Disability Gamechanger
    Welcome to the community @Jamie10! Great to have you here. 

    I'm sorry it's an anxious time for you and your family. Have you discussed these concerns with the surgeon? 

    I hope other members are able to offer their support.

  • Jamie10Jamie10 Member Posts: 4 Listener
    No we have only just found out and we are waiting for the date of surgery, I think we are going to arrange another consultant appointment 
  • steve51steve51 Member Posts: 7,175 Disability Gamechanger
    Hi @jamie1965

    Yes I had a Stroke initially.

    My Memory has also been effected.

    There is a long list of others.

    Yes if you want to see the consultant that would assist a good idea.

    Please let me know if there’s anymore help/support that would be helpful to you.


  • emmarenshawemmarenshaw Member Posts: 712 Pioneering
    @Jamie10 I hope the appointment is able to help ease some of your partner’s worries, but know that you can always come here for a chat if you need to. We have a Coffee Lounge where members talk about all sorts of different things.
  • Chloe_ScopeChloe_Scope Scope Posts: 10,653 Disability Gamechanger
    Hi @Jamie10, I really hope you are able to get an appointment so things will be clearer.


  • christian96christian96 Posts: 101 Member
    Hello @jamie10. Brain surgery can be scary. I recommend bringing a list of questions to ask her neurosurgeon at your next appointment. This is a non exhaustive list of questions and tips for you based on my experience: 

    How long is the recovery time? Does she need to stay overnight or not? Can you tell me a bit more about the operation? Who will be responsible for her pain medication afterwards? You may wish to bring a small notepad for note taking on the day of her procedure as well. Jot down all the important information in it. This includes brief notes on the actual procedure as well on any prescribed medication she needs to take. Sort out the childcare well in advance as a precaution. 

    How long will she be in the operating room for? Are there any known side effects? How can I find out more details about the procedure? Ask as many questions as possible so that you can be prepared fully too. Accept all post procedure kind offers of assistance. Discuss everything with the specialist beforehand during the next appointment. Have a backup plan in place just in case. This is important. 

    Pack accordingly. Take one or two books for her to read as well as food to eat afterwards. When will she wake up? Also be aware of the usual food and drink limitations. I hope this is useful. Refer to this article for more questions although not all of them will be appropriate to ask. https://www.brainandlife.org/articles/before-scheduling-an-operation-consider-these-important-questions/ 
    You are in my prayers! 
  • woodbinewoodbine Community Co-Production Group Posts: 4,118 Disability Gamechanger
    Hi I had a cyst removed from my brain in 1998 it was hoped it would stop my seizures, although the OP took almost 5 hours I was ok afterwards problem being it didn't stop the seizures, I would have no worries if I ever needed further brain ops.
    "Putting a child into care, isn't caring for a child" (T.Rhattigan)
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