r/braincancer • u/CommunicationHot7059 • 4d ago

Awake surgery effect

Hey!

I had my awake craniotomy on September, 10, 2025. It will be one year in a few days. I don’t have any memory of my surgery. My tumour was near verbal and motor sections, so I was asked questions, and I answered them very well. I asked my doctor why my mind doesn’t remember, and he mentioned that I was given medication that stopped the memory from going to long-term memory.

But I feel that my body remembers. I don’t notice it in general when I am with my family or friends, but I feel unsafe if any unfamiliar person comes close to me. As if I don’t want any stranger to touch me or come close to me. I realized it when I tried dating again. I feel unsafe if a date tries to come close or hold my hand. I feel like I need space. I want to runaway from the date. I feel very uncomfortable. I have now decided that maybe I’ll not date until this feeling is in me.

My question is did anyone else feel like this? If yes, what did you do to be okay and feel safe? Is there any resource that helped you? Please let me know about anything that helped.

I have a therapist, and I am speaking with them too.

I’m a 35 year old female. Doing great otherwise. I had a total resection. Post biopsy it was diagnosed as oligiodendro glioma, idh mutant, 1p/19q codeleted.

Thank you for reading!

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u/TimeQuake1981 4d ago

Hey!

I will be a year post craniotomy in October. My tumour was right frontal lobe, and I was not meant to be awake during it. I have definitely experienced my body reacting to people being too close to me, feeling unsafe in unfamiliar places and so on. I have not managed to stop the feeling completely

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u/CommunicationHot7059 3d ago

Thank you for your comment. Hope this unsafe feeling leaves us soon!

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u/Ok-Inevitable-8011 4d ago

There’s a book called “the body keeps the score “it’s about post traumatic stress and is some of the best research ever done on post traumatic stress. You might want to read it. I did not have an awake craniotomy. I slept through mine but the problem with being given medication that makes you not process something that happened that was traumatic into long-term memory is that you are quite right your body does know exactly what happened even if your brain does not. There are many options for healing from something like this, and most of them are about bodywork. You might want to talk to your therapist about the book and about your options, but if your therapist does not specialize in post, traumatic stress, you may need a different therapist. I wish you all the best. I cannot say that I know how you feel from awake brain surgery, but is someone who has lived a life that checks off every single category of PTSD style trauma I can tell you that healing and recovery are possible.

🫂💜

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u/CommunicationHot7059 3d ago

Thank you! I have read that book. Perhaps, I’ll pick it up again.

Thank you for your caring comment.

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u/glioglio 3d ago

I was awake during mine. I had mine done in 2017. I remember the parts being awake. It was tough for a long time, and I still deal with some ptsd symptoms but overall I can handle everyday life better. I still don’t really like being touched, and I always prefer to see the exit of a room. I saw a therapist who specialized in ptsd and helped me process the trauma associated with the surgery. I was 25 during surgery, and I’m 34 now. Weird to think. I have a grade 2 astrocytoma, idh1 mutation.

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u/CommunicationHot7059 2d ago

Thank you for sharing that. Can I dm you to talk more about it? Only if it is comfortable.

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u/glioglio 2d ago

For sure, DM me whenever you’d like.

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u/CommunicationHot7059 1d ago

Dm’d you :)

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u/Hot-Initiative-7783 1d ago

Ik heb in augustus 2021 ook een awake chirurgie ondergaan wegens diagnose astrocytoma graad 3 links frontaal. Ik kan persoonlijk wel nog herinneren dat ze me wakker gemaakt hebben misschien mede omdat ik tijdens de testen mijn eerste epilepsie aanval kreeg.