Had unplanned brain surgery 6 days ago. AMA.
I was sent to the ER 9 days ago (Friday) due to a series of frantic doctor's visits that discovered I had swelling around both my optical nerves, which some very urgent tests eventually pinned down to being caused by some general brain swelling thanks to a ping pong ball-sized tumor in my right temporal lobe. After a weekend of tests and insanity, the tumor was removed on Monday, May 4th.
My brain is still definitely processing the last several days' worth of insanity, but I'm handling direct questions well. AMA!
EDIT: Sleep achieved. I'll be on and off keeping you guys entertained as my brain allows until you get bored with me. Doing decently so far today in general.
Proof: makeshift staple zipper in my head! Warning: Kind of creepy.
It's benign. I actually have a genetic disorder that causes me to sprout benign tumors in fun places, and undergo routine MRIs for monitoring them, so we knew this one was there. There are just so many tumors in my system that aggressively treating every single one is a no-go.
They do at least tend towards causing issues slowly when a particular tumor decides to misbehave, though. This one was just motivated or something. Every other surgery I've had has been planned out in advance, not frantically like this one.
Neurofibromatosis, or something else?
Yep, NF2bie in the house.
Is there a secret handshake?
Hmm...maybe that was part of all the neuro status check exercises they made me do every time they checed my vitals and crap...
My dad, his dad, and so on, all had nf2. I'm really glad I dodged that bullet somehow. Shit ranges from mildly annoying to really fucking serious. My dad can barely hear cause of a little asshole tumor growing against some shit.
Congrats on winning the coin toss there. We know for sure that it goes back to at least my grandfather in my fammily. We think my great-grandfather may have had a mild case, but he died before it was offically a thing, so that has never been confirmed.
Holy beans, I like how you just come out with that. Almost like "oh yeah my body has a sick sense of humour where I get lots of jolly tumours. NO BIGGIE!"
If you can't laugh at your own issues, who can you laugh at? My sense of humor has always been on the dark side, though. An excellent coping mechanism for sure.
My brother had this or something similar and passed away last September after one grew in a bad spot. Be careful and get those MRIs!
I'm very sorry for your loss. :(
Do any of the tumors give you special powers?
Well, this one magically imbued me with the ability to not spend Mother's Day with my SO's mom, does that count? Otherwise, sadly, no superpowers.
I think you'll get a pass from your SO.
Oh, I already have. He would rather not have had my scrambled brain as an excuse, but that's because he'd rather my brains not have needed scrambling.
That doesn't sound very fun.
Nope, it hasn't been my best week ever.
are you me?
Not to our knowledge.
I don't think "fun" means what you think it means.... :p
Glad you're okay now though, OP.
Fun is in the brain of the tumor-producer. Or something.
Not totally out of the woods yet, but time and rest should get me there!
You're a very bitter person, aren't you? I'm still capable of having a positive influence on the world around me.
Perhaps you should waste fewer resources on trying to bring people down.
Neurosurgeon here, I'm glad they caught the tumor before any permanent issues! NF2 can be a very tough disease to deal with, but it sounds like you've got a great attitude and good team around you. Just out of professional curiosity, where was the surgery done and who was the neurosurgeon?
Always cool to stumble across a neuro! I definitely have a great team, and I do my best in the attitude/outlook department.
The surgery was done by Dr. Bettegowda at Johns Hopkins. He does good work!
Hope you had a pleasant stay in our NCCU. Feel free to come back and visit, not as a patient hopefully.
Ah, you at Hopkins? Other than the one cranky nurse I had down in the ICU, everyone over there was fantastic. Hospital stays suck, but you guys do good work. I very much hope not to see any of you again soon, though!
Plot twist, that was the cranky one.
Nah, the NCCU staff was fantastic, even with me being a complicated patient with all my other health crap stacked on the brain surgery. They took good care of me!
I've seen you using 'crap' quite a few times already in this thread. Now you mentioned you've been having some issues with your brains and all, but how about your intestines? Everything alright down there?
Well, between forced fasting for various tests, eating hospital food, and all the extra whatnot they were kind enough to pump into my system...fun things happen down in your gut post-op!
I also ted to self-censor more when I'm mentally mushy like this, just to be on the safe side. :p
Did you die?
Not that I've noticed, no.
Thank you for making me laugh!
I have a 15 year old niece with NF2 thank fully other than a cosmetic growth on the side of her head she's not needed any surgery yet. Reading through your comments was quite scary (I've never read up on NF2 mostly because the internet generally gives the worst case), she's tough though and had to deal with a lot of other medical complications (moyamoya)
Always glad to provide a chuckle or two!
I'm glad your niece's case has been mild thus far. I hope it stays that way. My NF2 is not the worst case ever, but I'm up there in the ranks. Best wishes to your niece, tell her to keep hanging tough!
Hi. First, I'm a security guard working in the healthcare industry, so that's a pretty damn awesome war wound if I've ever seen one.
Second, glad you're doing well. Scary shit there.
Third, what's the name of the condition that causes you to have all these lovely little lumps sprouting inside you like a fungus?
Thanks, I'm proud of my head zipper. Not looking forward to the staple removal, though. Based on past experience, staples pinch more coming out thatn stitches do. Trying to decide if I want to bee creepy and ask to keep them in a jar or something...
Scary for sure. Not my first rodeo, but emergency brain surgery is way more of a ride than a planned one.
The disorder I have is called neurofibromatosis type II. Pretty rare. Most of the tumors don't cause damage, but I do have a nice little list of various health issues caused by them.
Well, since this is your 4th rodeo, I'm sure they might consider letting you keep them. Good memento and conversational piece.
What lovely complications do you have?
Oh man...you want the long list or the short list?
I'm deaf in both ears. both of my vestibular (balance) nerves are shot, so I walk with a cane. I have nerve damage to both my left arm and left leg thanks to a real pretty tumor high up inside my spinal cord tat there's no way to operate on without causing a hefty amount of bonus damage. I have a good bit of damage to my right facial nerve, so that side is pretty droopy.
Lots of comparitively little stuff too, but those are the big ones.
I have a friend with NF and he lost his hearing in a similar manner. His condition has gotten pretty bad in the last year or so, but before then had a Cochlear Implant that did wonders for his quality of life. Do you have one or is getting one a possibility?
Sorry to hear about your buddy!
You need a functioning auditory nerve for a CI, so since my deafness is nerve-based, they're not an option for me. I do have a different kind of auditory implant called an auditory brainstem implant, though. The sound quality isn't quite as good as a CI because the eectrde placement is a little trickier, but it's way better than nothing!
I've got this condition but no real side affects to it. Your list scares the hell out of me, because that doesn't sound fun
Don't panic! My case is pretty well up the rankings severity-wise. I've known people with worse cases, but most of the people I've met with NF2 have had far fewer complications from it than I have.
Well based on the shape of the scar, I think the only option for you is to be a Christopher Nolan-esque Riddler.
Depends on how long it stays visible. I actually have a mirrored scar on the left side from a previous surgery, but the hair over there covers it so well that you can only tell it's there by touch.
I've had two staples on my scalp before, and they were pretty quick and painless to remove. Granted that was only two. Good to see you're doing well!
Yeah, I know they're not agonizing or anything. It's when you get past the irst few and know you've got more coming that it starts sucking. Still easier than the surgery, though!
Do you have that $5k I borrowed you?
They didn't scramble me bad enough to fall for that one. ;)
How about a date?
Sorry, my guy has dibs in the date department. I'm flattered, though.
Can you describe the post-surgery neurological treatment you are receiving and advice you may have gotten that will help your brain heal ?
Sure, let's bullter-point this one.
- I am currently on a steroid to help reduce both post-op swelling and the pre-op swelling that the tumor caused.
- I'm home now (which is huge, because hospitals are awfuul places to try to recover from things), but I'm on a pretty strict set of post-op instructions. Lots of rest, help with any significant physical activity (even getting myself food and drinks).
- I have loads of follow-ups scheduled over the next few weeks -- neurology, neurosurgery, MRI, plus getting my staples out.
- I'm on an anti-siezure medication as a preventative measure until I'm healed up, in case any car tissue decides to form in poorly-chosen spots.
Mind if I ask which steroid and anti-seizure meds you were given? I'm a pharmacy student and just sorta curious! Glad to hear you're doing well!
Decadron and keppra, respectively.
Awesome. I was wondering if they gave you any post op instructions on brain activity, keeping chill and such... Lots of new info since the Iraq/Afghanistan wars produced so many brain injuries....
(My TBI was 15 years ago.. my memory may have worked a bit better if I hadn't pushed to make sure my brain worked after that. Apparently I was supposed to take it easy and not 'think too much' for a few weeks.)
I wasn't told to steer clear of info overload or anything, just a general "don't push yourself too hard" on top of all the physical limitations. Gotta let the rebooting complete itself before I start doing too much with that new hollow space up there!
What kind of tumor was it?
Interesting! Do you have NF2?
I do indeed. Good catch!
Any right hemisphere deficits coming up yet? You seem very cogent.
I've got some general "brain slogging through mud" going on, but no specific new defecits. The general brain blargh is normal at this point in the process, so it''s being monitored but not freaked out about.
Do you have like, ESPN now?
Nah, sports aren't my thing... ;)
Did you feel any pain?
Not before the surgery, no, but there has certainly been some after. Not nearly as bad as anticipated, though.
This is my fourth brain surgery (though the first three were actually planned in advance). The post-op oain this time has been significantly lower than the last three. I haven't needed anything stronger than Tylenol since the day ater surgery, which is nice. My brain is scrambled enough (and hopped up on enough other post-op meds) without throwing narcotics in the mix.
Specifically what opioids were you prescribed and how much did they help with pain? What did you like/dislike about them?
They gave me dilaudid via IV for the first several hours post-op, which certainly helped pain-wise. I was consistently rating my pain low enough that it was decided to try me on Tylenol alone pretty quickly, though. I've always hated the general loopiness from stronger varieties of painkillers when I've needed to be on them in the past, so I was eager to switch over as long as the Tylenol ended up being enough for pain control, which it did.
You're tough as hell, I'd be pressing that drip button every 5 seconds haha
Getting my butt out of that hospital was a way higher priority than getting a fix. Even though my medical team was fantastic (other than one cranky mean nurse), hospitals SUCK. They're a necessary evil sometimes, but still.
Seriously, though, I'm pretty impressed myself with how minimal my pain has been this time around. My surgeon picked a good line to cut on, apparently.
That's awesome. I know what you mean about the "loopiness" of opioids. They can be very sedating and make you totally unmotivated.
It's the general disconnect they give me that bugs me the most, I think.
Have you noticed any neurological changes from having so many craniotomies? I.E. memory loss, word finding, coordination, taste, etc. (I'm a neuro nurse, but I only see patients for [hopefully] a couple days post-op; I'm not involved in their long-term care, I've always been curious how it turns out in the long run)
I've had lingering minor short-term memory issues and delayed refexes from previous surgeries, yes.
Some shorter-term stuff always happens to me too. Sensory processing is probably the most obnoxious. Every single brain surgery I've had has screwed up my senses of smell and taste short-term (seems to average about 6-8 weeks for me), and figuring out what food is actually palatable while my brain is rebooting is kind of obnoxious.
I've also had short-term issues with spelling words a couple of times post-op, but that particular issue hasn't cropped up this time around.
I'm glad to hear most (if not all) are short-term. Best of luck with this, and any future, recoveries! I don't know if it helps, and you'd be pro by now, but we suggest to chemo patients to douse their foods with garlic or lemon when fighting odd tastes.
It's not so much that things taste odd during this phase as it is that most flavors are extremely bland in general. Smell and taste are lower on the post-op totem pole than just generally mentally rebalancing, for me at least. Sweet and tart flavors are comig through better than anything else right now, so the lemon is a good call. I'll have to see if being heavy-handed with garlic does anything. I love garlic anyway, so that can't hurt if I can get my rain to notice it!
What symptoms were you experiencing that lead you to going to the doctor's in the first place?
How urgent was the surgery?
Also, you said that you have a likelihood to get tumours in "fun places" - do you have to go for lots of tests because of this, or just go to the doctors for any small strangeness?
I had some intermittent visual flashing and splotching crop up. That's pretty high on the "oh crap, get this checked out" list when you already have brain tumors.
As to how urgent the surgery was, even the docs that were a little calmer about it were urging a fairly rapid schedule, sinv\ce my vision was being affected.
I have regular MRIs done to monitor my tumor growth in general, visits with a neurologist to talk about what's actually going on, plus trips to various specialists if anything funky starts going on. Most of my tumors are brain or spine located, so those are the ones that are monitored most carefully, ut they can pop up anywhere.
Could you elaborate on what you were seeing?
I see a couple white spots almost every day, not eye floaters though. A few times I've seen black spots.
There didn't seem to be any sort of consistent pattern to it. Sometimes it was both eyes at once, sometimes it was one or the other. Sometimes more towards the edges, other times more towards the center. The best analogy anyone has presented me with is getting squid inked in Mario Kart.
Floaters were definitively ruled out (I do have a couple of those anyway, and was able to describe the difference), whiuch is part of why they looked at the nerves and found the swelling.
Hey man, my mom is about to undergo a very similar surgery coming in a few weeks. The whole family's pretty worried about her recovering from the surgery well. Its actually pretty strange that I saw this post. Right time, right place I guess. But, as far as the surgery, is there much risk as far as what the doctors told you? A surgery on a brain is never really without its risk, but did it go well for the most part? And, what can we expect to need to do for our mom post surgery when she's home to help her heal quickly? I figure knowing what you're struggling with will help us prepare to take care of her.
Sorry to hear about your mom! Any surgery has its risks, of course -- they're pretty thorough about going over that stuff with you pre-op.
There is a LOT you can do to help your mom. Once she's home, make sure spmeone will be around 24/7 for awhile. Set up assignments if need be, even. Making sure she gets her post-op meds on schedule is a big deal. Making sure she's fed/hydrated/generally comfortable will go a long way too. Even getting up and walking to the bathroom or to get a glass of water can be a heck of a task right after brain surgery, so having someone around to help her is huge.
Definitely make sure you've got all the bigger stuff covered for awhile, too. She's not going to be up for OR allowed to do anything even mildly strenuous for awhile, like laundry, grocery shopping, etc. Make sure she's covered in the transportation department for all her follow-up appointments as well, since she won't be allowed to drive for a couple weeks at least.
Hope all goes well with her surgery!
Is there any noticeable side effects?
I've got plenty of general "brain working through mud" going on, but that's normal based on my preious experience. Should clear up over the next several weeks. It's hard to pin down any new "minor " brain issues at this ipoint, but nothing big has cropped up.
Were you awake during the surgery?
I was not.
Why did you not have to shave your head?
They shaved a good pathway of hair off around the incision site. My hair is long enough that it was safe and easy to mostly tuck up out of the way while they had me open, so they didn't need to take it all.
Did they keep you awake during the procedure? If they did, how did it feel knowing they were messing around in your brain?
Nope, I had a nice 6-hour forced nap.
How much is it going to cost you?
My insurance will cover most of it, thankfully, but it's still going to be a hefty punch in the wallet. I won't know for sure until the bills start rolling in.
How do you know you woke up?
My dreams are usually a lot less linear than this, so it's a safe-ish bet.
Do you live in the USA? If so, how much did it cost and is your health insurance covering it?
I do live in the USA, yes. My insurance will cover most of the insanity, gratefully, but I will have to pay for some of it. They haven't sent me my share of the bills yet, so I don't know for sure what my share will be. I'm not holding my breath for it to be pretty.
Was your memory affected?
In all seriousness, no new memory issues showing up thus far. There are definitely some fuzzy spots from the last several days, but I attribute those to the stres/sleep deprivation/general insanity, not worrying about any lingering issues there at this point.
are you gonna grow up to be robocop?
I don't think I have the jawline to pull that off.
When did it all start? and how do you deal with it emotionally? how do you find the strength? Honestly, I can't even imagine dealing with that and hearing your side of the story could be inspirational. Cheers.
Well, I've had the disorder that caused the tumor growth my whole life. The visual issues specifically started a couple weeks before the surgery.
As far as dealing with it/being strong enough/generally coping, honestly, it always throws me off a little bit when people hoist me up for that. My body is what it is. I can either keep fighting or I can quit, yannow? Not that I don't have my low points where I'm just fed up with it all, of course. Wallowing in it all doesn't do me any favors, though, so I push through as best I can. I have a lot of people supporting me both personally and medically, too, which makes a huge difference.
Were you a fan of zombie movies? How about now?
I'm picky about zombies, though.
Are you going to be ok?
/I hope you'll be ok!
That's the goal for sure. They can't make any promiss, but my health team and my personal support people are all taking great care of me.Just gotta give the old noggin time to recover so we can see what's what.
Can you see into the future?
Besides us, do you have family to help you at this time?
I have folks on active hand-and-foot duty and on backup call as well. My people have done a fantastic job of keeping me cared for through this.
How do you like your eggs?
Right now eggs are on the "food that my screwed-up brain doesn't want because things taste weird" list, so. :p
I have a few questions.
Did you have any headaches or eye strain beforehand that led to your doctor looking for such a tumor?
NF is genetic, so does one/both of your parents had to deal with this? What has their history been with this disease?
How old are you?
What do your friends think of the complications arising from NF?
How often do these tumors grow?
This was a lot of questions, answer as many or as few as you want!
- As mentioned in one or two other comments already, I had some visual issues cropping up that led me to my doc for this one. We already knew the tumor existed because of my routine NF monitoring, it just became a case of "ok, it's actually doing something now instead of just hanging out there".
- My father had NF as well, yes. He actually passed away several years ago because of a car accident, but he had his share of NF-related issues as well. He was diagnosed before I was even born, so his experience varied significantly from mine due to changes in research and treatment strategies.
- I'm 30.
- My friends are great about my health issues. I'm extremely lucky in that department. They're all exellent at working within the scope of my various limitations, lending an extra hand when I need it, and keeping a close eye on me when they know something has the potential to cause problems for me.
- NF tumor growth is pretty unpredictable. Sometimes a specific tumor will sit around for years not really doing anything, then grow significantly in a relatively short span. That's why I have routine monitoring done via MRI.
Follow up... how old were you when you were diagnosed?
I was only 5 or 6. That's younger than average by a good few years, but they were monitoring me for the possibility right off the bat because of the hereditary component. With genetic testing now they can diagnose hereditary cases even earlier. That just wasn't an option when it was my turn.
NF is about 50/50 hereditary vs spontaneous mutation, though, and the spontaneous cases are often not caught until around puberty.
Very interesting. I'm glad they caught it early.
I'm becoming a child life specialist. Did you ever interact with us as a child? What do you think about child life?
I actually had to google that one. I did not interact with any that I can recall, though. The day-to-day "life" stuff was less of a focus by the pros when I was a kid than it is now. It looks like an excellent idea for sure.
What kind of surgery were you planning?
And no it wasn't as fun after I read the description. Hope you recover buddy! :)
I wasn't planning on ANY surgery anytime soon. Bah. Thanks for the well-wishes!
How many fingers am I holding up?
How was Dr. House?
It's not exactly rocket science now is it? ;)
Glad you're OK though, friend of mine had an aneurysm on an artery 2 weeks ago, the surgeon told her that very few make it to the hospital, and those that make it into the OR have 40% chance of survival, she made a 100% recovery. They operated on it by going through her artery in her thigh (all the way to the frontal lobe of the brain!)
Science is fucking awsome!
And that, kids, is why I work in health care.
Psh, rocket science is for people who can't hack neurons. ;)
Glad your friend had such a positive outcome. Brain stuff is serious business!
You're totally right, though. Science rocks! Thank you fir helping take care of schmucks like me. :)
Are you part of any trials to do with NF2?
My girlfriend works on an NHS team caring for people with NF2 over here in the UK, and helps with trials too. They are giving their patients in one trial a chemotherapy drug called bevacizumab (AKA Avastin) if their tumours grow more than 4mm a year. They are also trying to treat tumours with "gamma knife" sterotactic radiosurgery. It's early days but they are apparently getting some positive results in some patients. She days thanks for making this post to raise awareness of the condition!
My neuro is actually talking about tryng me on Avastin in the near future, as it so happens. I'm not actively participating in any trials over here at the moment. Most of thye more advanced ones are focusing on hearing preservation, and I don't qualify for those (boo hiss).
Gamma knife makes me nervous because of the swelling potential, but I'm still keeping an eye on it for future refining of the rechniques involved.
High-five your lady for me, NF2 research is good!
Surely SOME planning went into this surgery, no? Is there such as a thing as improvisational doctory?
j/k congrats on getting rid of your young one!
Well at the very least they had to load the staple gun, yeah. ;)
Damn, that is scary! Glad you made it out of surgery ok. Were you awake for the surgery?
Nope, I had a nice rubber-mask-induced nap while they worked on me.
Hey, glad to see you're alright. My question: What kind of restrictions have your spontaneous tumors caused you in life? I saw you have an SO at least, so that's great, but has it been a deal breaker with others in the past, or with potential jobs?
I've certainly had more than a few "cannot even" people pass through my life in various roles. I've always been very open and up-front about my limitations, which does serve as an initial filter, but there are still things it's hard to process just by being told about them.
Jobs...I could write a novel just about jobs. I've found ways to make life work more often than not, though.
How often is brain surgery a planned operation?
Well, this was number 4 for me and the first 3 were planned in advance. I have some pretty hardcore medical stuff going on in general, though, I'm sure that impacts my percentages.
Have you experienced any vision loss due to the pressure on your optic nerve? If so, hopefully they caught it in time before any permanent loss occurred.
The pre-op intermittent blotchiness hasn't totally stopped, and there's no way to know how much more improvement there will be with that until I've had time to heal. Fingers crossed, though! At the very least this should theoretically halt further damage.
Has it affected your memory in the slightest?
Not that I can tell so far. There are definitely some patchy bits from the last several days, but I'm inclined to chalk those up to stress/hospital sleep deprivation rather than the tumor or surgery.
Fellow unplanned brain surgery survivor here, glad to here things seemed to go well. I think you have the cooler scar, mines just a straight line on the back of my head.
Did you find you were more nervous for the surgeries that were planned well in advance? I feel like the one benefit of the unexpected is you barely have time to worry.
We need a logo or something!
It's hard to say which was more stressful/nerve-wracking. Having time to plan and process vs having less time to worry is a tough call.
The fact that the ER docs at the first hospital pretty much lost their minds when they saw my MRI didn't help with the stress either! Once they got me transferred to Johns Hopkins so I could be taken care of by docs who actually have background with my disorder (and some of whom already knew me specifically) the whole thing was less catastrophic-feeling.
I'm a plan-maker in general, though (helps work around my various issues if I can get details sorted out in advance), so I think I'd still give an edge to the non-surprise surgeries even without factoring in the initial ER nightmare. Luckily for me, even with the lack of planning, I had a ton of people step up and provide a ton of help and support.
Do you feel as if your head is lighter?Do you think you should smoke pot to relieve the pain?
People keep asking me if I can feel the empty space. Things feel different over there in general right now, but it's hard to pin down how much of it is just my head going "hey, something happened here" and how much of it is the tumor being gone. We'll see if I can figure that out better in a few weeks when things are more back to normal in general.
The pain is so surprisingly minimal at this point that I'm not even taking Tylenol the second I'm allowed to have more...just a couple times a day. They gave me the option of more advanced pain management if it was necessary, but thankfully, it hasn't been. No supplementation needed in that department this time.
Are you a mental now?
I did seem to develop a knack for killing batteries with my brain in the hospital, does that count?
Glad they caught it. Good luck to you. Have they biopsied it yet?
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