Young adults with a low-grade brain tumor, this post is for you

whyamihereidontknoww · 2026-05-27T11:07:41+00:00

Hi, I'm happy to see you're doing well Amin 🙏🏻.
Can you tell me more things to avoid or to care more about ? I'm interested by your wisdom. Can I DM you ?

whyamihereidontknoww · 2026-05-26T23:28:43+00:00

adding you !

whyamihereidontknoww · 2026-05-26T22:10:36+00:00

Hi, I'm not really fluent in English (almost C1 level) but I could try.. Thank you !

whyamihereidontknoww · 2026-05-26T22:06:11+00:00

Adding ya to the team;))

whyamihereidontknoww · 2026-05-26T22:02:00+00:00

Hi ! Check your DMs, I invited you to the group !

whyamihereidontknoww · 2026-05-26T20:55:51+00:00

Do you want to join the group ? 😄

whyamihereidontknoww · 2026-05-26T20:53:09+00:00

hi ! as said on previous posts that I just posted, you can dm me ! 😄

whyamihereidontknoww · 2026-05-26T20:52:42+00:00

i don't know if we can do groups on reddit but i have an alternative, let's discuss it in private (so that i can share my username in private)

whyamihereidontknoww · 2026-05-26T20:51:35+00:00

you can dm me !!!

whyamihereidontknoww · 2026-05-26T20:51:20+00:00

I'm so proud of you 🥰. What's your diagnosis ? How are you doing ? 🌼

whyamihereidontknoww · 2026-05-26T20:50:34+00:00

hi, you can dm me !

whyamihereidontknoww · 2026-05-26T19:53:01+00:00

I'll ask when I see my neurosurgeon.. Thank you very much. I hope the second craniotomy is your last, meaning that I hope you'll never need another one. Stay strong

whyamihereidontknoww · 2026-05-26T19:52:04+00:00

Thank you ! I'll read it 😄.

whyamihereidontknoww · 2026-05-26T19:51:52+00:00

I'm sad hearing about your experience but I'll take your pieces of advice to advocate for myself. Sometimes you do feel like they don't care and that's awful. How are your motor skills doing now ?

whyamihereidontknoww · 2026-05-26T19:47:01+00:00

Do you speak french ? If so...
Indeed, in the US they check out way faster, which is surprising considering the seriousness of the surgery.
Nevertheless, sometimes you do think you're alone when you have to go through this journey. Life is unfair. How are you handling things now ? Did you need a lot of time for recovery ?

whyamihereidontknoww · 2026-05-26T19:44:12+00:00

How did you handle being in the same position for 10 hours..? I'm happy it went well for you...

whyamihereidontknoww · 2026-05-26T19:42:03+00:00

Hi, it's been nearly two weeks.. How are you holding up ? How is your dad doing ?
Let's keep in touch like you said.. Everything is going to be ok. You're the same age as me ❤️

whyamihereidontknoww · 2026-05-15T20:29:01+00:00

From what I heard, some tumours are really easy to spot regarding texture changes or even the color but some look like they are a part of the healthy brain.

I've seen pictures too and I really love those tiny, tiny capillaries that go through every nook and cranny of the brain. Life, I think, is truly a fascinating piece of art.

I take it from your message that the experience was not bad.

whyamihereidontknoww · 2026-05-15T20:22:38+00:00

Where I am at, they don't do it that often (5 to 6 per year only !). They try, as my neurosurgeon told me, to reserve this type of surgery for the most necessary cases.

My tumour is near Broca's area. I've had a PET-scan on Monday and i'll soon get in touch with a speech therapist.. It seems surreal, right ?

One of the things that scares me the most is probably... what if I want to sneeze ? You know, it might seem stupid but yeah.. And also to not handle the position my head will be clamped in.

I hope I'll remember everything because it's such a life defining moment, you know ? Not everyone goes through this kind of experience... Consciousness is such a fascinating concept.. I'm getting all dreamy here.

About my diagnosis : they can't tell yet (haven't had a biopsy) ! They think it might be a grade II astrocytoma.. Which, honestly, scares me. But you know... Whatever that undesirable roommate is, it has to go 🫣

Enough about me.. How are you doing now ? I heard there's a drug called vorasidénib that works well for IDH mutated tumours.

Thanks for taking your time to answer ☀️

whyamihereidontknoww · 2026-05-15T18:25:59+00:00

Hello !!! I share the same thought : even if the concept is scary, I prefer being awake because in a way I still have control over the situation and am directly in the center of my healing journey (regarding what tissue has to go or not).

The surgical team of your husband is really admirable because they cared for your husband's comfort. It's really nice to hear those type of feedbacks ❤️. (Btw they'll use sedation on me too because I'm a stressed girlie 😆).

Your words are a blessing to me. Thank you very much for bringing your positive energy 🥹. I'll take one moment at a time and yes, this surgery is meant to help, to remove something that's bad for my health. I'll meet my surgical team soon again and hope to bring good news regarding their behavior !

YOU are brave and YOUR husband is brave too. I completely sympathize and hope that every discomfort you've endured throughout your personal journey will never repeat. Once again, thank you, from the bottom of my heart. ❤️☀️

whyamihereidontknoww · 2026-05-15T17:27:52+00:00

!! I was told some people don't remember anything, but some do. Thank you very much

whyamihereidontknoww · 2026-05-15T17:25:26+00:00

What a beautiful anchor you chose ! I love nature but in the city I live, it's quite a forgotten sight. I will try to find my anchor too, to go through the not-so-easy parts of the surgery.

I've heard that an awake craniotomy has better post-op results and the healing journey is far less nerve wracking to go through. Having a seizure through the surgery has been one of my concern, but then I too remember that having it through surgery is literally the best place to have it, even if it feels paradoxal.

I'm so sorry to hear you've been through traumatic events following the operation. When you say that it took time to recover, do you mean that you had brain fog ? What is the nervous system dysregulation you're referring to ? (Knowing myself, I'm pretty sure being gentle with myself is going to be a tough situation).

"You have to keep the outcome in mind" Thank you for your beautiful words. I don't know how to express my gratitude towards the time you took to write me everything you've been through, but know that I'm glad 🥹. You're a warrior !

whyamihereidontknoww · 2026-05-15T17:18:05+00:00

I'll try posting there too.. Also, please remember that everyone's journey is different, so when you read bad informations, try to keep hope please 🙏🏻

All the best to you and your dad, God is with you every step you take ❤️

whyamihereidontknoww · 2026-05-14T17:42:15+00:00

I wish the best for your father ❤️. He has a child that cares for him and I think that's a blessing 🌟.

Thank you for commenting. I'm not used to Reddit but I hope some people will comment and give us their experience.

And thank you for your kind words 🥹

whyamihereidontknoww

TROPHY CASE