a thoughtful web.
Good ideas and conversation. No ads, no tracking.   Login or Take a Tour!
comment by elizabeth
elizabeth  ·  341 days ago  ·  link  ·    ·  parent  ·  post: Teen with sensory issues, ask me anything

I had part of my right temporal lobe removed as well! It’s gong to be the 10th anniversary at the end of the month, completely cured me of epilepsy that started during my teenage years. I was taking 13 pills a day at the peak. Modern medicine slaps 🤘they say they removed a golf ball sized piece, and thankfully i felt no noticeable difference after the surgery at all.

katakowsj  ·  339 days ago  ·  link  ·  

Congrats. Awesome for you. Had my original resection in2012. Also golf ball sized. Crept back around 2019 and recently showed aggressive growth. Last biopsy Mar. 2022 had it reclassified as glioblastoma. Bad stuff.

My sight is decent enough to navigate the world. Lost a bunch of roast veggies from my plate before dinner. Ibeheeled to my left and was unable to make out anopen fridge door. Oh well.

katakowsj  ·  339 days ago  ·  link  ·  

Better to focus on the positive right now. Seems as though my typing on my phone is waay better today than since surgery on 10/12. Not sure what changed, but I'll take it. One foot on front of the other is how we do these things, right?

elizabeth  ·  339 days ago  ·  link  ·  

I wish you the best for the next steps. I hope things improve for you.

b_b  ·  339 days ago  ·  link  ·  

Really sorry to hear about the recurrence, Jeff. Stay strong, buddy.

katakowsj  ·  337 days ago  ·  link  ·  

Yeah.Just plain sucks. in a holding pattern now. Henry Forord Hispital teamis going to review the biopsy and provide me some sort if plan of attack moving forward from here. My head is weighed down by the fear they come up with nothingtoo helpful.

They decided on gamma knife- type radiation therapy and some old-school

Chemo. I live to fight some more, I guess.

DanyRandom  ·  341 days ago  ·  link  ·  

So my sensory issues are more or less with the issue of ADHD and (my mom and doctor think) is on the spectrum behavior. I can't handle loud or sudden noise too well (to put it lightly) and I also really can't handle sudden or unnecessary touch.(also being put lightly) Ex: Fireworks,Shaking me/my things, Screaming, taking things right out of my hands-

I've been like this since I was a child, but still have no actual confirmation if I am on the spectrum or not, but everyone seems to just assume I am and have no issue calling me things or babying me.

I also have this issue where reading too long makes the words become (what i call) word soup. it's just everywhere and impossible to read, sometimes it just becomes different words and it's noticeable when i'm reading aloud.

Congrats btw on getting the Glioma out! :D