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Forums » Smalltalk » AMA: Brain Tumor Surgery/Survival.

Since I've seen others do more than one AMA thread, I figured I would as well. If you want to see my other thread, it's on radio broadcasting and journalism.

For this one, I'm focusing on going through brain surgery and surviving with a brain tumor. Due to the nature of this subject, there might be some information that I won't go into too many extremely specific details about since it's a pretty personal. But feel free to ask whatever question you might have!
Was the tumor removed during one surgery? And how long would you say recovery took?
MissPixie Topic Starter

My tumor removal surgery was about 8 hours long. Unfortunately they weren’t able to remove all the tumor because it would’ve done too much damage to healthy tissue. So they opted to leave part of it in and manage it when/if it regrows than to remove the healthy tissue with unknown consequences.

Recovery from surgery was long. I spent 2 weeks in the hospital, half of that was in the ICU ward. Then I was on strict home/bed rest for 3 months. And even after that, I was limited to what I could/should do for 6 additional months afterwards. I think it took a full year before things settled down into a new normal, or to be considered fully recovered from the brain surgery.
Kim Site Admin

Thank you for being willing to share about this with us!

Did you find yourself struggling with depression or other mood changes because of said tumor or the recovery process?
MissPixie Topic Starter

This is a touch tricky to answer because we're not 100% sure if these things are things I was going to develop anyway or if the tumor made these develop. When the tumor was finally discovered, it was large enough to be pressing my brain against my skull and the tumor itself was eroding a bit of the skull as well. And it wasn't until after the surgery was done that they believed the tumor had been growing since I was a younger teen - which means a lot of my formative years and mental development years, my brain might have been affected by the tumor. I did some really illogical and irrational things - beyond the whole teenagers do stupid things type. But most of that resolved itself once the tumor was out.

After the surgery, there was a period of years where I had crippling, soul crushing depression and (trigger warning) suicidal thoughts and many unsuccessful suicide attempts. And looking back on it now, me and my doctors believe that my brain had gone a little bit haywire because it was so used to functioning with this pressure and it being pressed on. So with that physical factor gone, it had to relearn how to do work and fire signals again. There was also a lot of frustration because leading up to and after the surgery, there were memory issues and those have continued to persist even now. There was frustration and continued frustration now because if I get too stressed or emotional, something misfires in my brain where it makes my speech get jumbled or mixed up to where I don't make sense (even though in my head I'm thinking I'm talking normally, it just doesn't come out of my mouth that way).

I also know that at the beginning of it all when the tumor was first discovered, I struggled with the fact that I'm going to have to deal with a brain tumor and the affects of it for the rest of my life. In addition to the fact that there's a possibility that I may need to go through surgery again in the future to remove it if it regrows large enough. And also knowing that I'll have to be on medication for the rest of my life one way or another was something that I had a hard time coping with.

Some days I think it's super cool and amazing I survived brain surgery! And other days I feel really embarrassed or even ashamed about it.
Kim Site Admin

That is fascinating. I can see how it would be very complicated to navigate and understand, for both you and your brain. Thank you for sharing so much.
This is such an intimidating and beautiful story, personally I think you are very brave to share. How did going through this have an effect on how you have chosen to live your life/ did it affect how you made future plans for yourself?
MissPixie Topic Starter

I think because of having to go through this, I'm a lot more daring in living my life and a lot more willing to take chances on things - such as moving to my favorite place for a job, trying out for various things because why not, definitely not feeling any qualms about not fitting the norm in terms of looks and what have you for someone in my career.

Also, I think it has changed the way I make plans in terms of my lifetime. I know some people say they have goals that they want to accomplish in their 30s, and then another set of goals for when they're in their 40s, etc, etc. I just have a list of life dreams/goals that I don't have a set age to accomplish it by, just hope to achieve them at some point during my lifetime - however long that may be!

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