Awake Craniotomy

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So I’ve recently been diagnosed with a grade 2 glioma. Neurosurgeon is talking about doing an awake craniotomy. I understand the procedure, but I’m curious if anyone else has gone through it and what it actually felt like. Only thing I can guess it’s like would be getting a tooth pulled?

never had surgery before for anything, so it’s all a bit new to me! Grimacing

  • Hi  Highlad

    welcome to the online community.  Sorry to hear about your diagnosis.

    My husband had an awake craniotomy in Sept 2020 to debulk a grade 4 tumour. He remembers talking to the speech and language lady during the surgery. He said he was aware of some discomfort but nothing worse than being at the dentist.  The team who operated on him seemed to vary the levels of sedation so he was "asleep" for parts, awake for the important bit then allowed to sleep while they finished up. His wound was stitched with dissolving stitches so he never even had to have those removed. He was also discharged from hospital within a couple of days.

    As he would describe himself "he's a big girl's blouse" and he's also terrified of needles so if he can cope with it I'm fairly confident you'll be fine.

    Hopefully someone else in this group will be able to share a first hand account  and give you some more reassurances. There's always someone around who "get it" . 

    It’s always good to talk so do call the Macmillan Support Services on 0808 808 00 00 - most services are open 8am to 8pm, 7 days a week if you have any concerns. 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.

    Stay positive. I wish you all the best for your surgery (sorry- you didn't mention when its scheduled for) Also sending you a huge virtual hug. You've got this.

    love n hugs

    Wee Me xx

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

  • That’s quite interesting! It’s comforting to know that it’s not all that terrible. I’m also pretty freaked out by needles, so I get where he’s coming from!

    my surgery hasn’t been scheduled just yet. I’ve had a consult with a neurosurgeon and have some kind of specialised MRI where I have to move my arm about in a few weeks to get a better look at the tumour. Neurosurgeon was saying the craniotomy would be an option (probably preferred due to my young age and life circumstances) after the MRI.

    I hope your husband is keeping well enough, and yourself as well. I know my own wife is overloaded with stress at the moment, so I can only imagine what you’re going through with a grade 4.

  • thanks Highlad.  He's actually doing ok. Physically he's still really fit. He is a marathon runner and so far is still able to run- thank God! His tumour affected him more mentally and has caused some communication issues. Ask him to run a half marathon- no problem. Ask  him to read a sentence  - not happening. Its been a tough journey - I'll not lie- but we're hanging in there and taking each step as it comes.  A dark sense of humour and a positive attitude helps!

    Love n hugs

    Wee Me x

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

  • Hi there,

    New to this community, but this post caught my eye since I've been through this kind of surgery and can relate.

    It does sound daunting, but in my experience it's been surprisingly straightforward.

    I had a very similar experience of the surgery to Wee Me's husband - they sedated me to get access to the tumour, and then brought my around for a short while for the actual cutting of the tumour to check if it was having any impact on speech or movement.

    I suspect the drugs they use help, but although I was awake and could talk, I felt surprisingly calm

    Once they'd done the cutting of the tumour, they sedated me again while they sealed everything up, and next thing I woke up with a big bandage on my head.

    Hope this helps, please let me know if I can provide any other info. 

    Very best wishes with everything!

  • Glad to hear the whole thing is fairly straight forward! It relaxes me a bit to know that it’s not really all that bad.

    out of curiosity, did they shave your whole head for the operation, or just a section of it?

  • Hi Highlad,

    Just a section  - a strip about 2-3cm wide from my ear to the top of my head and then from there along the middle down to my forehead. They used metal staples to hold the skin together while it healed (surprisingly quickly), which the GP removed about 10 days after the op.

  • with my husband, he more or less shaves his head anyway due to lack of hair on top. His incision was above his ear in an S shape but they used dissolving stitches so he didn't need to get them removed. I guess it depends on the surgeon's preference. 

    love n hugs

    Wee Me x

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

  • Yes I’ve had one it was all fine apart from cutting through the blood brain barrier bit painful the rest went ok apart from right at the end I couldn’t talk or move my left side . And had to learn how to walk and talk again but got there took a while. One think I didn’t know was if you stop your body moving after 48 hours your muscles start to waste away . If only they had stopped 5 minutes earlier I would’ve come out with less problems. I wouldn’t put any body off it took me like 2 or 3 years to get back to almost my old self. But I’ve only had like the tiniest bit of the tumour returning. Not much help I’m sure it’s the luck of the draw

  • I had awake craniotomy last July 2021-  which lasted for 4 hours.  I felt nothing.  I chatted to a speech therapist throughout checking my speech.  They shaved my head off in that area.  I couldn't talk afterwards very well.  I couldnt the locate the words in my brain to find them to speak them.  They said that was due to the swelling as my brain had gone through a traumatic experience.   That was scary. And find it hard to get my words out quickly now.  My brain moves quicker than the words can come out.  So sometimes I sound slurry.  My speech I can find hard.  But if you only just met me for the first time, one thinks I am being careful about what I say!  I had a speech therapist come to me for 6 months which was so so helpful.

    I wonder how your husband is now and his communication?  I found reading the paper allowed helped me ( or did it! I hope it did!)

    My speech therapist got me a download an app which I found so helpful.  I had to decrible things without saying what is was.. and my family had to guess.

    My speech therapist was so amazing.  She would go out and about with me helping me in shops and she ask me how I felt it went. I was so tired - unimaginable tiredness - so they sent me on a tiredness management course which was so helpful!

    Hope thats helpful.

  • Hmm, that’s a joy I may have to face a bit further down the line 

    Will take some thinking about though - age 63 no children, no dependants…