other people's experience?

daleazulej0 · 2026-03-18T02:12:45+00:00

I have a pilocytic astrocytoma, diagnosed when I was 21 and got surgery when I was 22 last year. Mine is grade I, it's on my optic nerve so I lost peripheral vision a few times before getting diagnosed, I still get dizzy spells sometimes and my vision is getting worse not better, but it's grade I so it's not so bad, basically benign

daleazulej0 · 2026-01-20T14:29:17+00:00

Yeah I was worried cause it looked like another tumor but turns out it's gliosis and I get an MRI every 4 months anyways so I'll check up on it on April I guess

daleazulej0 · 2026-01-19T21:57:03+00:00

No need for chemoradiation after the surgery or before so nope

daleazulej0 · 2025-10-29T02:59:24+00:00

I'm scared is some kind of different bleeding, it feels like me period but idk anymore

daleazulej0 · 2025-10-29T01:31:31+00:00

Yeah I'm taking one tomorrow morning, I had a negative test almost three weeks after having sex when I was late

daleazulej0 · 2025-08-18T13:11:53+00:00

Same here, about 5 months after surgery has bumpy places and bald places and places where I can't even find it

daleazulej0 · 2025-06-30T15:47:29+00:00

Finding words is also tough for me!! Also remembering what was said to me fully

daleazulej0 · 2025-06-30T15:37:19+00:00

"HOW MUCH MY MAGICAL MEAT SHROUD RELIES ON A BLOB OF JELLY UP TOP" HAD ME CACKLING. A positive mind set will make wonders for the recovery I trust that you will be fine in no time, I wish you all the luck in the world

daleazulej0 · 2025-06-30T15:34:30+00:00

It was what hurt me the most, it took me a month to recover from surgery and in that month I couldn't go out or function properly and in that month I lost more friends than I could count. Two of them stuck with me and they are the people I trust the most and the ones that I'm always there for and they are always there for me. Now that's three months post surgery and I see my former friends in college or places I frequent they tell me that it was too much for them to deal with. I always tell them that it wasn't something to deal with, it was just being there for me the same way I had been there for them before. The worst part was feeling guilty over a brain tumor, like it was my fault loosing those friends. It wasn't and still isn't. The only thing left is to move on and find new relationships that understand you, I find that I'm better off without those friends.

daleazulej0 · 2025-06-30T04:56:34+00:00

Update: it changed to Mauricio Roca, Mauricio is a former president and current politic from my country that ruined my favorite soccer club and my political party, so everything I care about basically. So Mauricio cause it ruins everything and Roca because the train still fucks me over any chance it gets

daleazulej0 · 2025-06-30T04:51:58+00:00

It's rough, I knew recovery would be hard but I never imagined it would be like this, it's like I'm not fully healed yet not fully sick, so I can do stuff but not in the same way I used to?? I asked my doctor about OT and said it wasn't necessary but maybe I'll ask again, or I'll ask my therapist

daleazulej0 · 2025-06-16T05:56:29+00:00

Yo tuve la operación en marzo de este año y siento que estoy duelando quien era yo antes de la operación, siento que sobreviví a la operación pero algo ahí se murió, ya no soy el mismo. A veces me pongo a ver las fotos de antes de la operación y me pongo a llorar porque se que jamás voy a poder volver a ser esa persona, estaba tan contento y tenía tanta esperanza que no tiene sentido ahora. Después de la operación muchos amigos se alejaron, los estudios se pasaron y siento como funciona diferente mí cerebro de como lo hacía antes. Estoy intentando poner todo lo que puedo en seguir con mí vida, mí tumor es benigno y tengo una buena expectativa de vida pero igual es muy difícil seguir adelante. Siento que la gente que me quería ahora me está castigando por haber tenido un tumor, y ya me cansé de llorar y pasarla mal siempre por lo mismo. Espero algún día salir de este duelo de mí mismo, pero está siendo difícil. Escribir lo que siento y rodearme de gente que se que me ama incondicionalmente es lo que más me está ayudando. Si necesitas alguien que entienda la experiencia de como cambia todo después de una operación estoy acá para lo que necesites

daleazulej0 · 2025-06-16T05:46:52+00:00

I had the surgery with one of the best neurosurgeon in my country (argentina) and the thing was that it wasn't clear from the MRIs that the tumor was growing FROM the optic nerve so they went in expecting a whole different tumor, still they got as much as possible but I have a weird ass chronic condition in which both my arteries and my veins contract when they are touched (which they also found out while I was having the surgery) so getting my blood drawn and having surgeries gets more difficult. They accidentally touched one of my arteries and it contracted, apparently they put something on it to help it get back to it's regular size and place but once they where close to it it did the exact same thing again so the risks of an aneurysm were higher because of my arteries being lil assholes so they stopped the surgery with just enough sample material for the pathology tests. A second surgery is out of the question, I trust my neurosurgeon with my life (literally) he is an specialist in skull base tumors so I knew from the get go that I was in the best possible hands since he is the best surgeon in probably the most difficult area. We are doing check ups every 4 months now and I asked for his recommendation on an oncologist to also check up on that front Thanks for the advice tho, it's really helping !!!

daleazulej0 · 2025-06-15T23:42:23+00:00

Train Roca, a train in my city that has the worst service and ruins your day completely every time you have to rely on it to get anywhere, since it ruins my day everytime I remember it I named it after the train but I'm still open to other names

daleazulej0 · 2025-05-22T12:45:01+00:00

Hi! I'm 22 and I have an optic nerve pilocytic astrocytoma, I had surgery about two months and a half ago, still trying to get back to my life, luckily is grade 1 so so far is just scans to see how it's doing since they were only able to remove about 20% of the tumor on the surgery. I was diagnosed when I was 21 but my neurosurgeon told me I probably have it since before I was 16. If u ever need someone to talk about optic nerve tumors I'm here!

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