Register a SA Forums Account here!
JOINING THE SA FORUMS WILL REMOVE THIS BIG AD, THE ANNOYING UNDERLINED ADS, AND STUPID INTERSTITIAL ADS!!!

You can: log in, read the tech support FAQ, or request your lost password. This dumb message (and those ads) will appear on every screen until you register! Get rid of this crap by registering your own SA Forums Account and joining roughly 150,000 Goons, for the one-time price of $9.95! We charge money because it costs us money per month for bills, and since we don't believe in showing ads to our users, we try to make the money back through forum registrations.
 
  • Post
  • Reply
DemonDarkhorse
Nov 5, 2011

It's probably not tobacco. You just need to start wiping front-to-back from now on.
I started feeling lovely early in 2018, with what were initially assumed to be tension headaches. My doctor gave me some drugs which seemed to work for awhile, but then the headaches started to get worse. I was also experiencing other weird symptoms like intermittent blindness in my right eye, muscle weakness, exhaustion, and dizziness, my doctor finally ordered an MRI in September 2018. I went home and took a nap afterward (because MRIs of the head/neck/brain is like being stuck in a tampon applicator for an hour while someone bangs on it and they insist on doing them at 6am) and woke up to a bunch of missed messages. When I finally got a hold of my doctor, she said "I don't want you to be alarmed, but.." Bitch, too late. I needed to go to the ER for an emergency neurologic consult. Four hours of waiting later, the neurologist finally showed up and showed us the MRI:



Baseball sized meningioma. Technically it wasn't IN my brain, but on the meninges, the outer layer. It was squishin the hell out of my brain meats and needed to come out, but it wasn't an emergency. The surgery was scheduled for mid-October.

The symptoms were getting worse, though, and I was having trouble functioning at work. I told my neurologist and he said I needed to come in NOW. I went in for surgery 9/29.



first thing's first, I needed this thing, an EVD/extra-ventricular drain. it drained off all the cerebrospinal fluid that had nowhere to go. the doctor that put it in gave me some versed and midazolam, and said that it had amnesiac properties, so i wouldn't remember the procedure. BULLSHIT i absolutely remember this man drilling into my skull with a tool straight out of little house on the prairie. i kept waiting for him to go too far. he left a blood clot in my hair that didn't come out until i pulled out the chunk of hair it was attached to a week later. the little foam circle on my head were used as MRI/CT markers. the doctors called them cheerios, i called them skittles pox.



sutures the day after. surgery took 7.5 hours, during which my parents stayed at the hospital. they met me in recovery. when a doctor asked me on a scale of 1-10 how much pain was i in and i flashed my hand at him 3 times, he said 15 wasn't an acceptable answer. gently caress that guy. they did bring out the dilaudid after that, and then i was ok.

i spent 9 days in the neuro ICU. the CSF still wasn't flowing where it should, so the EVD was hanging off my head the whole time. they'd close it off every once in a while to see how the pressure in my head was, and i failed most tests. there was talk of a second surgery to put in a shunt which would redirect the excess fluid into my abdomen where it would eventually get absorbed, but miraculously, my neurologist determined that i just ran at a high pressure. I wasn't getting headaches and i wasn't having any of the other symptoms.

the tumor was sent to a "tumor board" because it was a little bit unique. It was larger than most, and I was just outside the usual age-range of 18-34 at 36.

Adbot
ADBOT LOVES YOU

Reapp
Dec 11, 2007
Glad you survived that my internet friend.

SamDabbers
May 26, 2003



Reapp posted:

Glad you survived that my internet friend.

Me too.

Did they tell you how much the tumor weighed? Did you get to see it? What did the tumor board have to say about it?

Do you have any lasting effects from this experience? Did you gain any super powers?

DemonDarkhorse
Nov 5, 2011

It's probably not tobacco. You just need to start wiping front-to-back from now on.

SamDabbers posted:

Me too.

Did they tell you how much the tumor weighed? Did you get to see it? What did the tumor board have to say about it?

Do you have any lasting effects from this experience? Did you gain any super powers?

no, no details on the tumor. several of my friends/family wanted to know if i was going to keep it. my initial thought was they scooped it out with a melon baller, but now i think it was more like slicing a ham. it didnt come out all at once. i never thought about the tumor board; i have a follow up MRI in two weeks so I'll ask.

no super powers unfortunately, other than a new-found allergy to CT contrast dye.

no lasting effects either, except a CSF filled lump on the back of my head. apparently my skull leaks now. i can make it expand/contract by flexing.


Reapp posted:

Glad you survived that my internet friend.

Thanks!

Kazvall
Mar 20, 2009

My mom went through a very similar thing about 5 years ago, but hers was only the size of a tangerine, so you definitely win there.

Did they give you steroids before surgery?

DemonDarkhorse
Nov 5, 2011

It's probably not tobacco. You just need to start wiping front-to-back from now on.

Kazvall posted:

My mom went through a very similar thing about 5 years ago, but hers was only the size of a tangerine, so you definitely win there.

Did they give you steroids before surgery?

no, i don't think so, possibly afterwards though. i was on so much poo poo i lost track.

GoutPatrol
Oct 17, 2009

*Stupid Babby*

DemonDarkhorse posted:


no lasting effects either, except a CSF filled lump on the back of my head. apparently my skull leaks now. i can make it expand/contract by flexing.


Did all the hair come back, even where the scarring looks to be?

DemonDarkhorse
Nov 5, 2011

It's probably not tobacco. You just need to start wiping front-to-back from now on.

GoutPatrol posted:

Did all the hair come back, even where the scarring looks to be?

not quite. there's no hair directly on the scar, but everything else filled in nicely. my hair grows super fast, so it was back to a decent length within 8-10 months. the stuff on top of my head where the EVD was was awkward as hell since it stuck straight up for a while.

zjentohlauedy
Feb 27, 2006

Bad sportsmanship. A ruthless minority of people seem to have forgotten good old-fashioned virtues. They just can't stand seeing the other fellow w
Do chicks dig the scar?

DemonDarkhorse
Nov 5, 2011

It's probably not tobacco. You just need to start wiping front-to-back from now on.

zjentohlauedy posted:

Do chicks dig the scar?

not that ive noticed, it's usually under my hair. also, i would prefer if dudes dug it instead

Decoy Badger
May 16, 2009
How did your daily life go after the surgery? Did you ever consider things as back to normal at some point?

Weaponized Autism
Mar 26, 2006

All aboard the Gravy train!
Hair Elf
Do you keep the tumor preserved in a jar, proudly displayed on your living room mantel?

DemonDarkhorse
Nov 5, 2011

It's probably not tobacco. You just need to start wiping front-to-back from now on.

Decoy Badger posted:

How did your daily life go after the surgery? Did you ever consider things as back to normal at some point?

it took about 3 weeks-ish before i fully regained my strength and stamina. all of my other symptoms were resolved pretty much immediately. the only lingering effect is a CSF filled lump at the surgery site that is likely permanent. it sucks, because i can't lay on my back anymore. i do have a donut pillow, but the lump is in such a stupid spot that its not comfortable for long. otherwise i was back to baseline pretty quickly.

Weaponized Autism posted:

Do you keep the tumor preserved in a jar, proudly displayed on your living room mantel?

several people wanted me to, but i dont think they would have let me. i wouldn't have been opposed to it. i could put it on top of the tree at christmas.

sticksy
May 26, 2004
Nap Ghost
Glad to hear you're ok, OP. Shame they didn't let you keep it, like slices of bologna or otherwise, or at least get a photo with it next to you to remember it by.

This is a very dumb American question since we hate our citizens, particularly if and when they become ill or are poor, but I'm curious what your insurance situation was like and did you get some 12 page, million dollar summary of benefits letter from your insurer?

Also how did you handle it with your job, hopefully just get on LTD of some sort to take as much time as you needed?

Are you likely never able to sleep on your back again or just for awhile until everything heals?

DemonDarkhorse
Nov 5, 2011

It's probably not tobacco. You just need to start wiping front-to-back from now on.

sticksy posted:

Glad to hear you're ok, OP. Shame they didn't let you keep it, like slices of bologna or otherwise, or at least get a photo with it next to you to remember it by.

This is a very dumb American question since we hate our citizens, particularly if and when they become ill or are poor, but I'm curious what your insurance situation was like and did you get some 12 page, million dollar summary of benefits letter from your insurer?

Also how did you handle it with your job, hopefully just get on LTD of some sort to take as much time as you needed?

Are you likely never able to sleep on your back again or just for awhile until everything heals?

thankfully i have pretty decent insurance, the total bill was something like $225k, but I "only" paid about $6k out of pocket. the bill was maybe 3-4 pages. An itemization probably would have been close to 100.

I was on short term disability for 8 weeks at 60% pay. my job/bosses were super accommodating, especially in the lead up to surgery where i was calling in or leaving early due to the symptoms.

i can lay on my back for short periods, otherwise it just gets too uncomfortable. the doctor at my most recent appointment made it sound like it's permanent.

Adbot
ADBOT LOVES YOU

Dogatron
Jun 24, 2020

DemonDarkhorse posted:

thankfully i have pretty decent insurance, the total bill was something like $225k, but I "only" paid about $6k out of pocket. the bill was maybe 3-4 pages. An itemization probably would have been close to 100.

I was on short term disability for 8 weeks at 60% pay. my job/bosses were super accommodating, especially in the lead up to surgery where i was calling in or leaving early due to the symptoms.

i can lay on my back for short periods, otherwise it just gets too uncomfortable. the doctor at my most recent appointment made it sound like it's permanent.

Should have had universal health care, free at the point of demand.

Apart from your poor choice to come out of a uterus outside of the UK, I am glad you are still alive. Hope you get full function soon and get out and about.

  • 1
  • 2
  • 3
  • 4
  • 5
  • Post
  • Reply