What you really wanted to know about brain aneurysms but were afraid to ask
April 9, 2010
There’s a lot of actual scientific info out there about hemorrhagic strokes for anyone with a working web browser; but based on a sample of my acquaintance, the stuff that everyone REALLY wants to know goes unasked and even more unanswered online. So here’s the straight dope on brain bleeds from one exceptionally stupid but unbelievably lucky survivor.
Does a subarachnoid hemorrhage hurt?
Maybe an 8 on a scale of 1 – 10, right behind the eyes. (I’m not saying 10 on principle to give myself some headroom; and I’ve only had a 9 “hope to die” pain once in my life, this wasn’t it.)
In the months before the aneurysm burst though, I had a long series of almost continuous bad headaches — which may or may not have been connected to the event! — and in hindsight I wonder if perhaps this oddly enough helped me because I was so used to stabbing pain in the headmeats. I think if you suddenly and without any warning experienced pain like that, most people would be flooded with adrenaline and stress hormones that would make a brain bleed much worse; but I was pretty calm (and exceptionally stupid, let me reiterate) about the whole thing.
When did you know you’d had a brain aneurysm?
Not till two and a half days later, in the ER. l thought I had super bad food poisoning for the first couple days, and just did what anyone would do in that case: laid in bed trying to drink water and take aspirin (which luckily I puked right up, cause aspirin thins the blood and thus is one of the worst things you can do for any kind of hemorrhage… although puking isn’t so wonderful in these cases either).
In hindsight it occurs to me that perhaps my dreamy two-day slide in and out of consciousness alone was, you know, not a sign of high intelligence. So here’s my public service announcement, kids: if you EVER pass out suddenly, go straight to the ER and get checked out instead of laying in bed trying to nibble saltines!
Did they vacuum up the blood in your brain during surgery?
Do people think they have tiny little shopvacs for brains or what? My aneurysm was on a bifurcation point of the middle cerebral artery, which you can find on this picture — pretty deep in there, right? — and the blood (a couple Tablespoons worth) had spread out pretty good by the time they operated. The brain is as soft as tofu and all convoluted, not suitable for vacuuming.
Does brain surgery hurt?
Not at all. The part that hurt the most was having a big-ass catheter called a central line inserted into an artery in my neck by someone who had never done it before.
Do you set off the metal detector at the airport?
Nope. I have two clips in my head (aneurysm burst twice), and I think maybe some screws from the craniotomy… but they’re tiny and made out of titanium, so I’ve never had a problem.
Did you think you could die?
Never occurred to me that I would not get 100% better. The rule of thumb seems to me that the higher your odds of going out, the less they mention it to you. So if your doctor is telling you that your cholesterol is a little elevated and you could die… the risk is purely theoretical. But if everyone is super cheerful and keeps assuring you that everything will be OK, you might want to make sure your will is up to date. I had no real idea of the odds until 2 weeks after my surgery when I finally spoke to the lead neurosurgeon.
Did you see god or get religion?
Nope, although I really wanted to. In fact one of my relatives came to pray over me and declared in prayer that I had promised to become a Christian if I got better — I did no such thing, I can assure you — and I almost blurted out, “You think your god doesn’t know you’re lying?” The closest I got to a Higher Power was lying there in the hospital for a week with nothing but science and the love of others to sustain me.
Do you have a bad-ass scar?
Yes but it doesn’t photograph well because it’s pale and about an inch back from my hairline. Ask me in person and I’ll show it to you.
How much does brain surgery cost?
$300,000 más o menos. Did I mention I was unemployed and had no health insurance when all this went down? I avoided bankruptcy almost entirely due to the charity of Stanford Hospitals — in addition to avoiding actual death and disability by their hard work.
Have you had any personality or sensory changes?
I might not be the best judge of this one, but I think not. Certainly I seem to have avoided the “gross neural deficit” that afflicts 35% of aneurysm patients.
Did you do something that made an aneurysm happen? Did you have any warning? Did you do anything that improved your outcome? Are you likely to have another one? Does it count as a pre-existing condition?
Don’t know, don’t know, don’t know, don’t know, and don’t know. I was quite amazed at how little they know about the whole thing… but part of it unfortunately is that so few hemorrhagic stroke sufferers seem to make a full recovery. Plus you can’t efficiently screen people for aneurysms before they burst… so the only way you can find out is the hard way.
Have your priorities in life changed? Are you less prone to do startups for instance?
Ummmm… that’s probably a whole separate blog post.
April 9, 2010 at 10:46 am
So glad to see a post and that you sound healed. That’s quite a lot to go through. Are you employed now?
April 14, 2010 at 5:41 am
wow. that is scary. i went through a similar situation in october. I felt a shooting pain behind my right eye. As if a pin were pushing the eyeball outside of the socket. I was watching a ravens football game and their jerseys were purple out of the leftt eye, navy out of the right. I took tylenol and upped the ante to alleve. next morning, i was blind in one eye only. I was blind. scary as heck. i went to the hospital and was diagnosed with multiple sclerosis after CAT scan, 2 MRI, and a SPINAL TAP (yeah tell your tour budy ADAM I took it to 11!) doctors call this optical neuritis-as if a blood vessel burst in my eyeball. like a stroke in my eye. I can see clearly now but I was pumped full of steroids. i was also unemployed and no insurance. I feel your pain and admire your courage. the thought of someone sawing open my skull to operate is terrifying. but what other options are there?
May 13, 2010 at 1:15 pm
Great story. Mine is alittle different. I woke up from a dead sleep puking. I wanted to just roll over and go back to sleep, but somehow I knew I had better not. I was a little confused. I took a quick shower because I knew I would not have another chance for a long time. I told my mom what was going, wrapped only in a towel. She and my sister got me in a robe, got me in the car, and that was when the pain hit me. I passed out thank God! It was great pain a 10 of 10. It came and went and so did I. I was told in a lucid moment that I was having a brain anurysm and they would take care of me. It is 2 years later. I havent worked. I have applied for social securty. Denied twice so far. I am starting to get worried because I don’t think I can hold a job. what about you do you work?
Your new friend,
Pat
May 16, 2010 at 3:15 pm
Hey Pat, so sorry to hear about your story. You were SO SMART to take a shower, that’s definitely something no one tells you
— that you won’t be washing your hair for weeks.
Have you had a lot of lingering effects from the aneurysm?
January 8, 2011 at 3:42 pm
My anuerysms were a little different (I had a triple bleeder)although anytime you bleed on the brain is the same death can come quick and for some such as myself won’t come at all, whew. I was on the computer and everything went black i could still hear but couldn’t see, the pain was a 10 a migraine from hell. I had a cold and thought maybe i coughed a little too hard,I passed out and hit something on the way to the floor, next i knew i was in the hospital the next day had i waited any longer i wouldn’t be here telling you my story. As my ears rang like xmas bells,so i decided to go to the hospital the pain was unbearable. I spent 13 days in the hospital, and have yet to get my bill which i am hoping will be given the charity treatment as well. The only real symptoms are the odd headaches that seem to just come on at will. I hope this can help someone ease their mind for me they wanted me awake but the pain was to great for me to be awake while they operated, so they knocked me out. whew! My behavior didn’t change but my sense of hearing became ultra sensitive the slamming of the fridge door can give me a headache, but hey I’m here!
God Bless you all!
January 10, 2011 at 7:08 am
I don’t look in on you via the cyber world much, but, hey, thanks for posting, and glad you’re not dead.
xoxo,
Gregg
November 22, 2011 at 8:26 am
I had same experince on Sep 8 2011 i woke up with the side of my head feeling like it was blowing out . I felt like my ear was blowing out I was babysitting my granddaughter..I got her downstairs and i remember sitting on the couch praying to God to help me take care of her. Why I didnt call for help I dont know guess i wasnt thinking straight. This happened on Tuesday I really dont remember much rest of week I know I babysitted on Thu dont know how but I did on Friday when i was walking my legs would fall out from under me did this all day Friday and Sat finally my son saw me fall down on Sat and said mom u r going to hospital. They did ct scan and said i had a brain tumor. Did tests on me till wed and operated on my brain turns out i had a brain bleed..Did I think about dying no never one time did i think i was going to die. I guess u just r not thinking like u r suppose to. I am doing good now I have trouble with vision got new glasses and they have helped some but I still cannot see like i use to. and i have alot of trouble remembering things that happened yesterday I can talk all day about things that happened 30 years ago but not yesteray. I really worry about it happening again because mine was from uncontroled blood pressure and i still have alot of trouble with it and have for about 3 years. I guess i just have to wait and see I seem to not to be able to find answer on what the chances r on having another one.
November 30, 2011 at 12:36 pm
Just found out yesterday that I have a aneurysm on top of a brain tumor that is due to be taken out in Jan. I was also diagnosed with a rare disease called “Moyamoya” back in 03 and have already had 2 brain surgeries for that! But to be honest this aneurysm coiling scares me the most for some reason. Blood pressure has always been excellant but I’m scared to death, is this normal?
November 30, 2011 at 2:46 pm
Hi Tresa, of course it’s normal to be afraid of having brain aneurysms! Plus everything happening before that… your brain probably doesn’t seem like a very safe place to you right now. Best of luck to you…
December 1, 2011 at 3:25 am
Thank you so much troutgirl! Surgery is scheduled for the 14th of Dec. I found out today. So I’m happy that it’s soon and I’m ready to get it over with and move on with the rest of my life
.
February 10, 2012 at 5:09 pm
Can anyone tell me if the pain is one-sided or both??? Did you have any strange head pains (dull aches) before this??? Please help… I’m scared…