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Gamma knife Surhery Radiation - Help with side effects

2 replies

VeryWorriedDaughter · 02/06/2022 00:02

Not me but my mum has a benign meningioma. She completed her 3 consectutive sessions of gamma knife surgery treatment last week, and now the side effects are really ramping up (her skin is sore, she's getting headaches + waves of strong nausea) and I'm getting quite worried.

Mainly, a patch on her scalp is very sore and she's terrified she'll lose her hair (for context, she has autoimmune alopecia at the front and manages to stop it progressing, but is so sad she has to cover it up). I'm on my own looking after her and getting extremely concerned this patch of scalp pain means she is going to have hair loss there - although the Marsden assured her it wouldn't happen... She's describing the feeling of when you've had your hair up in a tight ponytail all day and let it down at the end of the night, that temporary sore follicle feeling but x1000. My younger sister had cancer (5 years remission now thankfully) and I can remember her saying her hair felt heavy in the follicles right before it started coming out during chemo.

I really hope this doesn't happen to my mum as she's very depressed at the moment with it all, losing her hair will make things even worse. The Googling I've done suggests people who've had hair loss after gamma knife surgery said it was temporary, but I just don't know if mum's autoimmune alopecia will make it permanent :(

I guess I'm asking if anyone has had hair loss from GKSR or ideas on what else I can do to ease her pain and make her more comfortable at the moment? Can't even hug her as her skin is painful when touched.

I'm a bit all over the place emotionally as am trying to be practical and strong for her, but it's hard as it's hitting home our roles are slowly reversing as the years go on 😢

OP posts:
VeryWorriedDaughter · 02/06/2022 00:03

Oh ffs, *Surgery in the title. Am a mess

OP posts:
WorriedMillie · 02/06/2022 07:16

Hello, no experience myself (sorry) but has your mum got a specialist nurse she could call or email? To advise on pain relief, etc at the minimum.

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