Hello all. My name is Cody. I had a PXA brain tumor. I had been comatose for 13 days. I have been off treatment for about 6 years
Welcome Cody! We’re looking forward to hearing more from you. If you are looking for any specific information, you can use the search feature, and feel free to start a new discussion, much as you did here to introduce yourself.
Sharon from ModSupport
Welcome to Ben’s Friends
My name’s Merl, I’m one of the mods here in the TBI community.
I too have an astrocytoma but mine is a Grade 2 Diffuse Astrocytoma and considered to be slow growing, but it gives me no end of issues. I’ve required a few neurosurgeries (6) including a craniotomy and I have a shunt to remove the fluid from my skull. My last neurosurgery was back in '13, but I’ve a couple of related, but non neurosurgical, surgeries since.
Can I ask, what treatments have you had? Do you have any lasting symptoms/side effects either from the growth or treatments?
I’ve had a couple of MRIs and surgeries to remove my brain tumor. My side effects include a lazy eye, weak or missing teeth, balance issues, and memory loss. What about you?
MRI’s? I’ve probably had 10 or so and as I say, I’ve had 6 neurosurgeries. My ‘side effects’ are numerous and they vary massively. I often explain it as 'One day I could leap a building in a single bound (OK, so a bit of an exaggeration ) , the next day I might be lucky if I can crawl out of bed. I can never tell. My memory is chronic bad, if I don’t write it down… …POOF, it’s gone. I also get some weird sensory responses, like tingles in my hands and feet or down one side of my body. Odd visual disturbances 'Twinkle, twinkle little stars…’ Odd auditory disturbances like water rushing with each step. My balance is a mess, if I stand or go to move too quickly I get all dizzy and have found the floor with a THUD on a few occasions (my wife has also caught me a few times, so no THUD, but only 'cos she was there)
And then, well, then there’s the headaches and they are in a realm all of their own. Prior to surgery I thought I knew pain, thought I knew what a headache was, thought I knew how bad a headache could be. I was given a whole new vocabulary, like just WOW, unbelievable. The medicos wanted me to give them a pain rating out of 10, 1 being minimal, 10 being the worst pain ever. I said ‘15’, this was just beyond measure.
I must admit over the years the BAD, BAD headaches have reduced. I still have a 7-8 rating headache daily and a 10+ rating once a week (or if I overexert myself). Pain management is NEVER fun. I have to regulate my activity vs bright light vs sleep vs pain killers vs diet vs screen time etc, etc and trying to keep it all balanced is a real challenge. Have just one thing out of balance and my friend pain comes to visit. And I can’t plan when/where/how this is going to occur nor how bad it’s gonna be.
Add it all together and it makes everyday an adventure, an adventure I’d much rather not have. But here we are and we all have to manage the best way we can.
I got lucky. Sometimes, when I wake up, I do not remember where I am. Others, I can’t move. And I can’t hear good at all. Short term memory is likely kaput.
Yea, TBI’s are the only injury like it. Hurt your arm, it affects your arm. Hurt your brain and it can affect EVERYTHING. And it’s never in the same measure, two individuals can have exactly the same injury but have vastly differing outcomes. Even in my own situation, no 2 surgeries nor their outcomes have been the same and the symptoms vary from day to day, heck, sometimes they can vary from hour to hour.
As for the memory, I sometimes (jokingly) look at my wife and say “There’s nothing wrong with my memory… …who are you again?” and laugh. I laugh but for me it’s a bit of a sarcastic laugh because I know my memory is shot.
I was wondering if you like coffee?
Yes, I do enjoy my caffeine
Amazing. I’m a big coffee head.
What’s your favorite?
Double shot cappuccino, with lots of sugar.