Hi, I’m Canadian.
I live about an hour southeast of London Ontario and in January 2020 the neurosurgery team at University Hospital saved my life!
I had a very irregular shaped 7mm X 9mm X 12mm aneurysm in my right posterior communicating artery that ruptured and I immediately went into a coma. I had embolization coiling done and was on life support for 10 days.
I just recently found out (from my new family doctor) that there is (as of Jan 2020) another 2mm aneurysm at the neck of the aneurysm that ruptured. Apparently, an attempt was made to coil it at the same time that they were repairing the ruptured aneurysm.
I have so much anxiety now😞
I had my biannual (because I’m stable the neurosurgeon bumped me to 2 year interval checkup) MRA a month ago and will see my neurosurgeon on March 25th. I’ve got questions for him!
Hi, Charlene. I’m not Canadian, but I have a few friends who are. They are very dear to me and are very decent folks. 
I’ll bet that you have a few questions for your neurosurgeon on the 25th; I certainly would too. At the top of my list would be this one: if the neurosurgeon knew that there was another smaller aneurysm which was attached to the neck of the ruptured one and which they also tried to coil… why weren’t you informed of that at the time that the ruptured aneurysm was coiled? Had I been informed of that, I would’ve wanted to have more frequent testing to gauge the status of the smaller aneurysm.
Anxiety often comes from not knowing relevant pieces to a puzzle, and questions are a good vehicle to acquire those pieces. Make sure to jot your questions down in writing beforehand, and no question is a silly one.
I, personally, would either have a confidant with me to hear and register the doc’s responses. Or I would ask the doc if it was OK for me to record 'em.
If you feel comfortable sharing the results of your visit on the 25th with us, we would be honored. Thank you.
Thank you Peter.
I did have MRAs @ 6 months post discharge, @ one year and again one year later but then in 2022 the neurosurgeon said “you’re stable, I’ll see you in 2 years and you’ll have your next MRA then” …. Back in 2021 he’d told me that I’d have an MRA & see him every year for the rest of my life.
I will be writing down all of the questions I have for him for my March 25th visit as my memory is TERRIBLE.
Having a list of questions is always smart when we see a doctor. We learned to write them down in my phone and just hand it to my Neurosurgeon. If you write it on paper, make a copy so you can give one to the doctor and follow along with the other. Absolutely take someone with you so they can write the answers down and help form more questions. Make sure they can take good notes, BH can’t take a note to save a life. 
I’d ask if the neck was completely closed off from the artery and blood wasn’t able to get to the smaller aneurysm. My guess is that’s what happened, but it’s just an uneducated guess. It took me three procedures to get to the one year point for an MRI, every time she repaired it, my two year count had to start over. When we rupture, making it to the two year mark is reason to have a big celebration! I had to have a fourth procedure to get to the “see you in five years” mark but they changed it to every three years because of my pituitary adenoma and a small amount of blood seen at the neck of my aneurysm. I can certainly live with an MRI/A every three years.
Fingers crossed for good results and answers to your questions. Remember not to shake your head in agreement if you don’t understand tell the doctor to “dumb it down” for you. Most of us don’t know medical jargon as we didn’t learn it in school, unless of course you’re a RN or higher. When we nod our head as if we understand, the doctor thinks we do. Trust me, there is no class for mind reading 101 at any university.
Please let us know what your told and if you need any help with what questions to ask, we are here for you!
Well, I met with my neurosurgeon yesterday.
He answered all of my questions.
He called my little aneurysm a lobe (used another term but I can’t remember what he called it) of the very large aneurysm that ruptured. The lobe is about 3mm X 2mm now. It has remained fairly stable in size over 4 years and he is confident that zero intervention is necessary at this time.
He wants to do an angiogram next year.
He said this lobe is in a very dangerous place at the intersection of 4 arteries (can’t remember all of them but two are the carotid and posterior communicating). He doesn’t want to intervene until (if) it reaches closer to 4mm as he doesn’t want to do more harm than good.
I’ll have another MRA and see him in a year.
I also asked him what grade of subarachnoid hemorrhage I had in 2020. He did his grading right then and there with me, “grade 6, so since the scale only goes to grade 5, grade 5”.
I do feel a lot less (or more?) anxiety now that I’ve got answers.
Having a retired doc in my family, I was always encouraged to find surgeons who were “not overly eager to cut”. Looks like you found one. Great news and thank you for sharing it with us.
Glad he was able to answer all your questions! I’ve only heard the little ones called daughter sacs as it’s what my Neurosurgeon called them. She quit counting at 24, I don’t think anyone went back to my imaging to count the rest or if that would have been possible. It probably is but why bother, except my own morbid curiosity.
Here’s a diagram of the brain arteries.
Here’s the common diagram of the Circle of Willis
There’s a lot of grading scales out there but I think the most common ones are the Glasgow Coma Scale, Hunt and Hess, as well as the Fisher Scale. My guess is he used the Hunt and Hess as it goes to five. I only know my Fisher Scale (3j but here’s an older article on them as well as a few others. http://cmp-manual.wbs.cz/skaly/subarachnoid_hemorrhage_grading_scales.pdf
I’m watching a show on PBS Masterpiece that’s in Italian I think (I have to read the subtitles). In it, one of the characters passed out and was taken to hospital in a rural area by the main character. A doctor told him she has a cerebral aneurysm that had to be operated on immediately. When she wakes up the main character tells her she has something on her brain like a bulge. She shares she’s been aware of this for six months and it’s inoperable. At the end of the episode, she writes something like we can’t control when or where we die, but we can control how we live now. Personally, I like that theory and try to live by it one day at a time.
TOPIC: The WEB Device
I had a brain bleed in 2012 (a vasospasm) and, during exploratory surgery, two unruptured aneurysms were found. One was coiled; the other (according to the surgeon’s notes) was aborted because it was too small. Until 2022, I had annual MRAs (I’m allergic to dye) to follow the smaller aneurysm. It was stable for so long that, for the first time, I was also given a two-year interval. Two years later, in December, 2024, my MRA revealed that the aneurysm had grown (a wide-necked basilar aneurysm; 5mm, I believe) and required surgery. I was offered the standard surgery (through the skull) or a new endoscopic surgery that targets this particular type of aneurysm, the WEB device. I had the WEB device implanted on January 13. The surgery took 3-1/4 hours, then I spent 24 hours in the ICU … and then I went home. While the gold standard for f/u is an angiogram in 6 months, due to my allergy & coagulation meds for antiphospholipid syndrome, I will have an MRA instead. If it’s atypical, then I’ll have the angiogram. And, no, I don’t plan to fly until my next MRA. It makes me very anxious!
My neurosurgeon uses the WFNS grading scale (he has an amazing sense of humour and spoke like a very old man saying “we don’t use the Hunt Hess scale anymore missy unless we’re antique surgeons”
I have my 5 year follow-up appointment Monday (April 29th) and he’ll be scheduling an angiogram so that he can have a first hand look at my unruptured 3mm aneurysm (intersection of 3 arteries). Apparently he asked me last year if he could do the angiogram and I said no. I DO NOT remember replying no. What I heard was he’d like to do one next year. Not the first time I process information incorrectly and I’m sure that it won’t be the last. Sad part is that everyone perceives me as normal😞.
Hey @CharleneW,
This is VERY common for those of us with ‘invisible’ conditions, unfortunately.
I’ve often said "I often think it would be easier if I’d lost a limb, at least then everybody would be able to see why. I’ve tried to explain my situation to some people and you can see their eyes glaze over, they have no clue. In my bad stages my right eye closes up, my face droops and I’ve had people say “Ohh you don’t look very well…” What I want to say is “You want to have a look from this side…” What they can see is a micro-fraction of what I’m trying to manage. But instead I say something like “Yea, got a headache…” “Ohh I get headaches too” “Not like these you don’t”. Unless they’ve been here, in this situation, they really have no clue just how bad ‘BAD’ can be.
You’re not alone, I can assure you.
Merl from the Modsupport Team
Merl is dead on correct when we don’t have visible signs we often are perceived differently than the truth of the matter, it sucks.
I just read yesterday that the Hunt and Hess isn’t reliable and nor are some of the other popular, older ones! Your doctor sounds funny, I love a doctor who can joke around and be serious about what’s needed, they’re priceless! I have told my neurosurgeon some weird things that I don’t always recall. But we never knew what was coming out of my mouth, I’m getting better about it but sometimes when I’m tired, frustrated, etc something will pop out and everyone around will stare and either get mad if they don’t know me well or laugh if they do. Both reactions will confuse me. In the first year, I had to go back and have an angiogram around the six month mark. Had a bad experience with the Resident and kept telling my neurosurgeon I didn’t want “Dr.X” anywhere around me. It’s a very common name in the medical field, much like a Smith is in the regular world. About the 4-5 year mark, I was still saying this and I asked her out of the blue if she knew why I didn’t want “Dr. X” in the procedure room. She said she’d often wondered and I suggested she should have asked. I told her why and she looked at me somberly and said I never had to worry about him anymore. Then she started laughing and said she would always ask if she didn’t know. Tell him to ask you for clarification, when you say things that go differently than what he wants to do.
Yep, a doctor who takes what they do seriously without taking themselves too seriously is worth their weight in gold.
Oh! I absolutely love the “not like these you don’t” part!!! So frigging true!!!
It’s difficult for us to understand how no one whom hasn’t been through a brain aneurysm rupture can empathize and says things like “I get headaches too”. I just try to stay calm and think about the people in my life whom do empathize and care about me instead of letting it get to me. The majority of people don’t even know what a ruptured brain aneurysm is nor what a Grade 5 subarachnoid hemorrhage is. Oh well, Unfortunately, we do and we’re here to talk about it and support each other.
I had my annual appointment with my neurosurgeon yesterday. I asked him if they’d ever consider counseling as part of discharge home care. He replied that unfortunately that wasn’t available (Ontario Canada) but BASF was! He loves this support group! I told him I’d joined a few years ago!
Btw, he was happy with my MRA results (the additional unruptured aneurysm is stable if not smaller & it doesn’t warrant an angiogram at this time) & I am getting counseling through my family doctor’s team.
Wow! What fabulous news about your unruptured one being stable, if not even smaller!! Clearly, you are doing ALL the right things!! 
Literally yours is the best news I have gotten all day. Thanks so much for sharing!
Fin Whale Fan 
That’s fantastic news and reason to do a happy dance for sure! The members here are really great, I’m glad your doctor thinks highly of us. You’re right, we all need better after care. I think those in big cities have easier access than those in small towns unfortunately. We’ve had members in some countries that cannot access much of anything even in a big city.