Living with large craniectomy and exercise

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hi,

im new to this.  I’ve had secondary metastasis from thyroid cancer removed from skull and brain.  Is anyone here living with large craniectomy?  I am living with a hole the size of my hand in my skull and what they call a “parenchyma hernia”.


 I was very active before this all kicked off and wonder what exercise people with similar condition as me are finding suitable?

any advice much appreciated.  Thanks.

  • Not a problem for me. I just get tired quicker.As for hernia - sounds like somthing they would fix in surgery. Probably when swelling reduces. Ask them

  • Hi Slugsie

    a warm welcome to the group. So sorry to hear about all you are going through.

    As Mat has already said it is worth checking with your medical team about the longer term plan for the hernia. If your surgery has been recent then it will take time for any swelling to subside but your own medical team are best placed to answer that for you.

    With regards to exercise, my husband's medical team were all in favour of him returning to his fitness routine once he had recovered from his craniotomy. He was diagnosed with a stage 4 brain tumour in Sept 2020. He's also a marathon runner. Initially he couldn't run but as he recovered he would go for long walks (up to 20 miles) then gradually he was able to resume running. Last year he ran both the Manchester and London marathons. He also cycled regularly and went to the gym for a few months although he didn't do any weight/resistance training as such.

    We are now in the palliative care phase of the journey but he's still running. He ran 10 km today. It's his focus and the hospice doctor was wholly in favour of staying active for as long as he's able to. She caveated that with the suggestion that he be sensible about when he runs as his eyesight is now very poor eg suggested he run earlier in the day when its quieter out and about. 

    I guess what I'm trying to say is don't lose hope. You'll get back into your fitness regime when your body is ready but until then ask your medical team, listen to your body and do what you can under their guidance.

    love n hugs

    Wee Me xx

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

  • Thank you so much for your very kind message. Unfortunately, I initially had a craniotomy but they had to take the plate out due to complications so I am living with a hole the size of my hand in my skull and the membranes and CSF are “herniating”.  I’d have more confidence if I had the plate in.  I tried a bit of tennis and it really upset everything so had to stop.  I guess I’ll see in time what I’ll get back to.  But thanks for trying to help. I’m sorry to read your husbands story but you’d for him carrying on as best he can.  That’s all any of us can do!  I have, since posting this, been offered a face-to-face follow up as my vision started to go again - had a telephone follow up in December but this will be the first time since October that I’ll have seen my surgeon so he should be able to clarify things for me.