Flow diverter story (i'll try to put as many keywords as i can to help anyone else in the future!)

i’ve been a member here for a while. i didn’t want to make a post, or an introduction, until i’d had my surgery. i wanted to better help others with my own experience.

disclaimer: ofc, everyones body / mind / situation is different! and also, i only just had my surgery on thursday (30 jun 22). so i am definitely not ‘out of the woods’ yet. i am confident that things will be fine tho. and i’ll continue to do everything my care team suggests (aka, blood thinners + taking it easy).

about the week of blood thinners before: i was afraid of the blood thinners, like anyone would be. but again, everyone is different, but i have had zero side effects from clopidogrel 75 + aspirin 325. maybe a little tired? in fact, bcuz of the lack of side effects, i thought they were going to tell me they weren’t working when i had pre-op testing. but they were, and are working. and for my friends who identify as women, i had to start them while on my period. it didn’t effect anything then, but we’ll see this month, now won’t we. lol.

my (unruptured) aneurysm details: where is (soon to be was) my aneurysm? it’s on the ICA in the paraclinoid (aka paraopthalmic) segment, with no involvement of the opthalmic itself. it is ~3mm, which is considered ‘small’ and ‘low risk’ as we’ve all heard. it was incidentally discovered when i was having visual disturbances, as well as left side weakness, after having my twins 6 years ago. i did watch & wait for 6 yrs. it grew, but not alarmingly. hardly noticeable. bcuz of this, it was considered ‘stable’. something i could ‘probably live with’.

so you might ask, why did i choose the option of a flow diverter when it was presented to me by dr. babu welch of UTSouthwestern? sure, we’re told that small aneurysms have a ‘low risk of rupture’ but small aneurysms are, in fact, found the most frequently ruptured in clinical practice (aneurysms between 5-7mm, that is, with rupture factors themselves being individual as we know!). but here’s the thing… we can be told we have ‘over a 95% chance of it never rupturing’ but the fact is, statistics of rupture for small aneurysms exist for a reason. there is always a chance. and the chance might be small, but low risk is never no risk (this is how i think of it).

but also… it is also over a 95% chance (depending on your own aneurysm!) that you will be a success story with flow diverter. especially, if you are a case of an aneurysm located on the ICA in certain segments, and an aneurysm that is considered small (<10). even more than 95% in some cases.

i am not advocating for you to take that leap if there is an inner voice that tells you not to. my own inner voice was understandably scared, as anybody would be. but deep down, i knew i’d be fine. i needed to take this leap for my kids. i thought of the risks in reverse, rather than just seeing the statistics of risks. i thought of it like this: they might tell you the risk of surgery is around 3-5% (less these days) for complications. well, your lifetime risk of rupture + your own personal risks could potentially be 3-5% as well.

that’s why i made my choice.

side note: being in the neuro icu afterward for recovery, seeing those families crying, seeing those strong patients who had true ruptures? i know i made the right choice for me. and i know the ppl on this forum who have had ruptures and luckily survived are some of the bravest, toughest ppl in this world.

alright, so back at it. the flow diversion surgery: i did not have general anesthesia. i was wide awake. i did have local tho, where the numb you. this was my own personal choice. is that choice for everyone? nope. lol. i felt them putting the flow diversion device into my brain-vein. i even heard it. they even used a balloon assist i think. was it painful? that depends on the person. for me, it was more of a very slight sort of ache. temporary and on occasion when they’d move around in there. the dye is always a weird sensation, both visually and physically. if you have had an angiogram already, you have basically already had a flow diversion surgery. it is the same thing, but longer, more dye, and more moving around in your brain. they told me this: you have to be perfectly PERFECTLY still and if you move once, we put you under general anesthesia for your own safety, got it? and my doc is funny and kind, so was my whole care team, so i said to them: CHALLENGE ACCEPTED. i won’t be getting general anesthesia. i’m about to set the tough bi*** precedent here with y’all. and… i did. bcuz even after everyone was shocked i was awake the whole time.

(more on me and why i chose to be awake: i’m a veteran, mom of twins, have had a lot of situations ppl would’ve jumped out of their skin happen to me, so i didn’t make the choice to be awake lightly. i knew i could handle it. i’ve been thru worse. i was physically prepared for anything to happen, but maybe not so much mentally. bcuz who would be?) i have never been put to sleep on general anesthesia, so i was more scared of that than the flow diverter treatment!

it was about an hour and a half long. being perfectly still. i would grind my teeth or tap my tongue in my mouth if i got nervous, which ofc i did. nothing about the surgery was fun. since i was awake, i was able to hold my breath for them to get good pictures of placement. lots of dye is used. and if you ever elect to do what i did, make sure they put in a urethral catheter for you. they didn’t w me, bcuz they thought it’d take less time. nearing the end, i was like ‘can you do me a favor and move that sheath off my bladder?’ and if any of y’all can pee in a bed pan lying flat once you’re wheeled into the neuro ICU, more power to you, but i couldn’t.

for my friends who identify as women: i had to pee forever and couldn’t use the bedpan. not lying flat. they went in thru my femoral, not radial. i had to lie flat for at least 2 hrs. tbh… don’t even try the bedpan if you know you won’t be able to. i had them do a one-shot bladder catheter to drain me eventually. painful? ofc it is, but the relief was worth it.

the rest of the neuro ICU stay isn’t ‘pleasant’ (only bcuz you’re stuck in a bed) but i was so lucky with my nurses. you will have a million IVs, an a-line possibly (arterial line to monitor blood pressure if your doc recommends. mine wanted my blood pressure to be between a certain amount. i don’t have high blood pressure, he did this as a precaution). but you can eat, and everyone will be there to help you anytime you need it. nurses love the flow diverter (or other elective endovascular) patients. we’re the easiest.

right after the surgery: understandably, i had a headache. it felt like more of a tension or dehydration or low blood sugar headache, if anyone is familiar with those. so nothing extreme, but definitely not fun. i also felt tired, but then again i was tired. the headache resolved by morning and probably, due to the IV fluids. just like i’ve seen someone on this forum say before, hydration really is key. so is eating well. so when they ask you what you wanna eat, order a buncha things. and just eat it slowly. tiny bites with your fingers. it’ll make you feel so, so much better.

i had an uneventful neuro icu stay thankfully, but i knew if anything went down, i was already in the right place. they check on you a lot, but you can definitely get some sleep. a lot of sleep? nope. for me personally tho, i can’t sleep anywhere new. the nurses will be quiet in their check ups if possible, but the neuro team can’t be. they have to ask you your name, if you know where you are, and what day it is. mine was a trick question at 3am, bcuz my surgery was the 30th and then it was the 1st of july. so i said wait a minute! lol it’s july!

after effects: so i mentioned the headache that thankfully dissipated (for now), but i also was getting frequent photopsia, or migrainous visual disturbances. little squiggly lights. my aura friends on this forum probably know exactly what i’'m talking about. now that i’m able to take my magnesium again, they are not as frequent, but still around. i’m not surprised considering the amount of dye, as these things are triggered by this.

i’ll keep ppl posted. but as i mentioned, i’m only a few days out from my flow diverter surgery, feeling pretty good (but sore) taking it easy. and just in case, they used the pipeline flex with shield technology, and told me for my case, they thought this one was best.

another side note: before the surgery, i’d get gnawing sort of pain behind my right eye (where the aneurysm was) and other strange sensations… weirdly enough, they were similar when they were inserting the flow diverter. so hey… maybe it was best i had this done?

thank you so much for having me! if i think of anything i forgot i will update.

ETA 1: i am considered a “young” patient (aka less than 60 yrs old) at 38, and this was another factor in my favor, or so the literature + my doc says.

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Kiva, what you’ve written is really great! I’ve had some angiograms that were really fast and others that were not. I prefer the fast ones. My multi lobed aneurysm was 5mm when it ruptured, I don’t trust the statistics, or maybe I just don’t follow them as I didn’t read the book before I popped my pipe. If I remember correctly, there were two big studies, one for unruptured aneurysms that it seems everyone bought into hook, line and sinker and the other for ruptured aneurysms was criticized. I imagine politics in the medical field played a big part of both.

I’ve never been fully awake for an angiogram, though my surgeon uses very little. I tend to move a lot in my sleep. I do better both during and after with the least amount. I have wanted her to put a screen up so I can see what she is doing, but alas, I don’t get that wish fulfilled. I’d really like to see one…

Enjoy your twins, keep hydrated it takes awhile to flush out the dye, and remember your protein!

Thank you so much for all the information. I’m so glad that you are doing relatively well. Hope your complete recovery is swift. My aneurysm is on the left ophthalmic artery and I too have the visual disturbances you talked about. My son age 28 had to have the flow diverter because of changes to his brain aneurysm. He was fortunate that they caught it early and he was able to catch changes before a rupture. Again thank you for sharing.

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so update.

i ended up having a groin complication from when they went into my femoral. it’s considered ‘rare’ but w the fact they’re performing more and more of these surgeries, it is becoming more prevalent.

i woke up with an excruciating pain in my thigh (which i icepacked into numbing). now, i had some numbness in my thigh ever since i went home from the surgery. i was told that it was probably a combo of fluid / healing hematoma. but once i mentioned the pain, they wanted to rule out PSUEDOANEURYSM.

well folks, after a doppler scan, i had officially traded treating my brain aneurysm for the formation of a psuedoaneurysm in my femoral as a direct result of them going in that way. lol. i had dr. googled it so much i even knew what to look for when she was scanning.

i then had to go straight to the ER. where i stayed for 2-3 days. i had the thrombin injection to do away with it (painless) and was everybody’s favorite patient. this was shown to resolve the psuedoaneurysm the next day. i think that they’re supposed to scan it again to make sure it isn’t coming back, but i’ll find that out on monday. monday is my follow up for the actual flow diverter surgery and probably, now the psuedo aneurysm.

i hope this update helps somebody in the future. if you have any numbness, any pain in the thigh, or feel a small bump (mine was small!) that has a ‘thrill’ (a pulsing) or even if you have a stethoscope like i do, and put that thing on the bump on your femoral and hear a bruit (whoosh, whoosh!) then get your booty to the doctor or ER for a doppler. even just in case.

it was scary, and it made me pretty depressed. i wasn’t expecting some full, miraculous recover without any complications. in fact, i expected some (headache, dizzy, etc) and feared the more severe (stroke, etc). but i certainly didn’t expect a groin complication!

also, the lightshows mentioned up there have stopped for now.

now, i’ve always kind of had pulsatile tinnitus, but i can hear it faintly in my other ear now. i’ve had so many scans in the past that if it was caused by anything irregular, they’d have caught it. however, i will be mentioning it on monday. just in case.

I love reading your posts! There’s some type of musical quality (can’t remember the word lol) to them that makes me want to read more. I really appreciate your willingness to share your journey so openly, it’s a rare quality I think.

In all my femoral entries, I’ve only had one rather nasty long hematoma. I had forgotten the recovery RN used a stethoscope and listened to it. Thank you so much for the memory and the reason! It’s a great day when I am able to learn something new and you’ve started my day off on a great beat!

I wish you continued healing!

musical you say? i like that.

i spoke too soon and saw a little sparklers in my eyes yesterday. i also mentioned the pulsing, but they weren’t concerned since my head has been thru every scan known this galaxy. so we’ll see if the scan in sept picks anything up.

the hematoma that this stupid femoral aneurysm caused is still healing up, so i feel you on that. it’ll take forever probably bcuz of the blood thinners!

After I ruptured, I saw beautiful filigree lights, like fine Irish lace. I’d become so fixated on them, it didn’t matter much about anything else. BH would ask what was on my mind. It was funny because at that time I had no awareness of thoughts. I’d reply nothing I’m just watching my beautiful light show. At very rare moments, I will get a glimpse but nothing like I first had. Miss them sometimes.

Be careful and please don’t lift much of anything, difficult I know, until the hematoma heals!

Thank you for sharing your story. I am 9 months past incidental finding of an 8mm aneurysm in the same place, paraclinoid segment of the ICA, no involvement of the opthamalic. It’s on the right eye, and my left is the one I favor so I figure if something went wrong and I lost vision better the right eye than the left. Think I am leaning towards treating it, didn’t want to right away as we had a college graduation to celebrate in May, and I didn’t want any post surgery issues to impact that. I have been waiting until a 1 year follow up angiogram to see if there has been any growth. Flow diverter is the plan if I choose to have surgery because the neck is a bit wide. It really helps to hear your story, as I try to decide whether to continue to watch and wait or operate. My doc said it’s my decision and if I polled 100 docs they would likely fall 50-50 on whether to do a flow diverter or watch and wait. So thank you so much for sharing as my situation is so similar to yours.

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i’m so glad i could help, even if a little!

it’s scary waiting and watching (i did it for 7 years), and it’s scary making the choice. and it’s true, some doctors will say ‘nah just watch it’ and some, especially the younger doctors, will say to treat it, but emphasize that it is your choice. and the reason why that is (that younger docs tend to give more options) is bcuz new studies come out about risk factors all the time. and a lot of the aneurysms in actual practice that rupture are ‘small’. so ultimately, it comes down to what you want to risk, and what you can live with. bcuz we are all told the ‘risk is low’.

well, i wouldn’t do a lot of things with a low risk, bcuz i’m just not into risks. lol

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