Recovering from cranioctomy

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Hello everyone I’m new here! Sorry if I ramble on! 

My mum was diagnosed with 5 small tumours on her right frontal lobe in April. They initially thought she had a mild stroke but she deteriorated and was admitted to hospital  and they confirmed she had a Brain tumour.  At the time they thought the tumours were low grade but the consultant confirmed the tumours were high grade, aggressive and treatable but not curable. 

My mum had a craniotomy last Tuesday  to remove the tumours it went well and we are now waiting for the biopsy results to confirm the treatment plan going forward. She is a little swelled in the face and is complaining of hearing a tapping noise every now and again in her head. 

She seems to be doing really well physically and is walking, talking however her personality has changed a lot. She repeats herself a lot of the time and struggles with her concentration. I was wandering if anyone had experienced this before after having a craniotomy? 

thanks Pray xx 

  • Hi

    a warm welcome to the online community. So sorry to hear about all that is going on with your mum. Life's cruel.

    Something to remember about the recovery for someone who has had a craniotomy is that it takes time. Although she seems physically well, her brain is still healing from major surgery. There will be swelling to consider too so the symptoms you noted are all normal and part of the healing process. it'll take time as everyone heals at a different rate but things will settle down over the next couple of weeks. That said, if there are any symptoms concerning you, call her medical team or your GP.  My husband was really muddled up for about a month after his surgery but things did improve.

    This is a safe and supportive space. Please reach out here anytime and no need to worry about rambling - we all do it from time to time. Everyone in the group gets it. There's always someone here to listen, someone to hold your hand and to offer that virtual hug when its needed. You're not alone. We've got you.

    It’s always good to talk so please remember that you can also call the Macmillan Support Services on 0808 808 00 00 - most services are open 8am to 8pm, 7 days a week Clicking here to see what is available. This service provides lots of cancer information, emotional support, benefit and financial guidance or just a listening ear.

    I've also taken the liberty of looking up some info on the main website that might help you here. Here's the links

    Brain tumours | Macmillan Cancer Support

    Supporting someone | Macmillan Cancer Support

    plus some from another site

    Recovering from brain surgery - Brainstrust, brain tumour charity

    Recovering from brain tumour surgery | Cancer Research UK

    I hope this has helped to put your mind at rest a bit. 

    For now though I'm sending you a huge virtual hug and lots of positive energy. Stay strong. Please remember to take care of yourself here too. This is an emotional rollercoaster ride and taking time to recharge your own wee batteries is essential to put you in the best position to support your mum.

    love n hugs

    Wee Me xx

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

  • Thanks so much for your reply. That is reassuring it has all happened so quickly - she had her surgery a week after being diagnosed so it has been quite difficult to get our heads around everything.

    it’s just a scary time at the moment but I’m hoping like you say it will settle down once the swelling goes down. 

    thanks for the links I will check those out xxx

  • Hi there and welcome to the forum. My wife was diagnosed GBM in November and had a craniotomy. She heard the same tapping noise as your mum I think - for a few days and then it stopped. Her surgeon said it was the brain starting to regrow. Don't know if that was true but it was very reassuring to hear! She was also quite confused for a bit and even had some anxiety / hypomania brought on but the steroids, but with the right medication that calmed down.

    Good luck with the diagnosis and ongoing treatment. This is a very supportive community so ask away - I have done so myself and it's been very helpful and calming.