Hi! I’m new here. This is actually my first post. I’ve been lurking on this site for several months when I was first diagnosed but finally signed up. This site has been so helpful and I thought I’d share the info and what I’ve learned so that others who may have been like me (just lurking) could get more insight.
I’m 40 and found out I had an “unruptured” brain aneurysm a few months ago in September 2020. I got the most horrendous headache immediately after having sex. It felt like someone hit me on my head with a bat. I couldn’t even relieve the pain while laying down. It was horrible! I also started vomiting. But I did not go to the emergency room until the next day. That was my first mistake.
First lesson: Go get checked out! It is not normal to have this type of pain. If you’re asking “should I go” or “I’m not sure if I need to go,” the answer is “GO!”
In the emergency room, it seemed as if the dr didn’t want to give me a scan. I told him all the key words that would’ve perked up any good dr’s warning bells: immediate headache, worst headache ever, vomiting. But finally he relented and gave me a CT scan. He came back with the results and told me I had an aneurysm. If I listened to the dr, I would’ve went home and not found out about the aneurysm.
Second lesson: ALWAYS, always, advocate for yourself. Even when they say no, not needed, doesn’t seem appropriate, etc. Ask for what you want until you get it. Nobody cares more about your health except you.
The emergency room dr erroneously told me the aneurysm had nothing to do with my big bad headache and told me to follow up with a local neurosurgeon. He should be sued because I could’ve died listening to his medical advice.
Third lesson: Always take your advice regarding aneurysm from neurosurgeons. Not emergency room drs or any other type of doctors that do not specialize in aneurysms. Get a second opinion as well.
So I scheduled a follow up with a local neurosurgeon for a month later since that was the first appointment available. I was still under the impression my aneurysm was unruptured and intact. Turns out, the emergency room dr was wrong! My aneurysm hadn’t ruptured but it had a sentinel bleed (a small leak). So it was leaking for an entire month! I remember having a headache for two weeks straight after the first big bad headache. I took Tylenol and it didn’t go away. My head always felt cloudy or stuffed up. I had loud ringing in my ears like the dial tone of a landline phone. And I just stood by waiting patiently for an entire month for my first appointment. In hindsight, I should’ve called the neurosurgeon’s office and asked them to squeeze me in earlier. Thinking back to this time, I could’ve turned my leak into a rupture. Thank goodness I literally sat on my bed 23 hrs a day for an entire month because I didn’t feel good. My husband cooked, cleaned, and took care of the children. If I did any of those things, I truly believed my aneurysm would have ruptured and I would be in a worse situation than I am now.
Fourth lesson: Call, bother people, speak up, if you feel something is wrong. Give the dr all the info about what’s going on and don’t keep it to yourself. Maybe if I told them the symptoms I was having they could’ve seen me sooner.
I was originally scheduled for a cerebral angiogram with a neurosurgeon from a different and better hospital but once the dr saw my old scans and heard my testimony, he told me I had a leak and scheduled me for emergency surgery. I had coiling and a stent put in. It is the same process for the procedure as the cerebral angiogram. They make a cut on the leg near the groin area (femoral artery) and insert a long tube and inject the dye for the angiogram and that’s the same route they take to also put coils and the stent in. I was asleep the whole time. A cerebral angiogram would have meant I stayed in the hospital for 5-6 hours and the coiling and stent meant an overnight stay in the ICU and I could leave the next day. This really scared my husband because he was told to pick me up in 5-6 hours and then he received a call that I was undergoing coiling surgery. Poor guy was a wreck!
Fifth lesson: Make sure your house is in order. You never know what’s going to happen. I wrote down all my passwords, bills were on automatic pay, etc. I even wrote down passwords to my phone to unlock it. Just in case. Lastly, I did write a letter to my daughter. Again, just in case.
Thank goodness my surgery went well. I had no serious health concerns except I was newly diagnosed with diabetes. But my younger age and general good health played a factor in my recovery according to the dr. I was up and able to use the restroom myself after surgery, able to speak and recognize things. I went home and did have headaches for a month or so. It’s gotten better but I do occasionally don’t feel good.
I feel like I am about 92-94% back to my normal self. I forget things sometimes. Like certain words for what I’m trying to say. Like I’ll say “chipmunk” when I mean “squirrel.” I completely forgot one of my sisters. I was making a list of all the females in my family along with their shoe sizes for Christmas slippers I wanted to buy in advance. I added my mom and even my brother’s wives. But totally forgot one of my sisters until another sister pointed it out. Some random memories are gone. Like what happened or what people said. On the outside, it just looks like I’m forgetful, clueless, or ditzy at times. But I notice it. I also stutter a bit now, especially when I’m trying to find the word I want to use. Or sometimes it takes me a couple extra seconds to say what I want to say and it comes out as a stutter.
My memory was a bit worse immediately after surgery. I couldn’t remember a set of 3-4 ingredients so when I went to the cupboard 2 feet away I forgot what I was looking for. I couldn’t memorize the 6-digit code that was texted to me for 2Factor authentification to login on the computer or access accounts. I couldn’t remember instructions on how to use a walkie talkie. I tried one button and it didn’t work. My brain didn’t connect to tell me to try the other buttons. Something that simple never crossed my mind. Things like that happened a lot.
I also turned into a klutz. I bumped into everything! New bruises showed up daily. On my feet, hands, even my stomach! I would scrape my knee getting up from the dining table. I would scratch my hand pulling something out from cabinets. Spatial awareness was off and I’d walk into a door I didn’t open all the way. I couldn’t walk upstairs for over 2 weeks! The bruises I got were a sickening green color. I think from the blood thinner medication.
It’s been 4 months since my surgery. I get headaches, stiff neck, a stuffy head occasionally. Often enough to be annoying but occasionally enough to not be too concerning. My memory is better. I can remember codes and ingredient recipes now. I don’t get bruises as often anymore. Most bruises come from the kids knocking themselves into me. I still stutter and forget things but if I speak slower and use less words, it’s better. So that’s why I say I’m about 92-94% back to normal.
I’m truly grateful. Even with these shortcomings, I’m happy that I’m mostly normal. I can function. I can continue a meaningful life.
Things that I’ve changed:
- I don’t drink as much coffee anymore. I drank one cup everyday maybe for 4 years before my surgery. Now I drink it every other day or so.
- I don’t have high blood pressure but keep an eye on things that can increase it. I’ve told my kids and husband not to scare me or make me angry. (They’re still working on this.)
- I’m doing a lot activities that are easy brain building activities. I write in my planner. I make diy crafts. I paint. I read.
- I’m so traumatized with having sex. Just slow and cautious for now.
- I’m giving myself time to do anything and everything. I don’t rush or put pressure on myself to finish something. There’s no deadline. I want to give my recovery as best of a chance and effort as I can.
Thank you for reading. I hope that my experience can help some of you out there. I know I was looking for similar stories as my situation and they helped me tremendously. It’s also nice to just let you guys know I’m here and I survived and I’m grateful. 
