Weighing options. Has anyone experienced a rupture while on watchful waiting?
If yes, how big/where was your aneurysm?
What happened?
How long were you watching before the rupture?
I’m getting mixed opinions (1/2 opinions, in process of getting 4) on whether to treat or not to treat and go watch + wait (4mm x 3mm cavernous/cliniod RICA). If treat, recommended intervention (2/2 opinions) so far is flow diverter.
If we do decide to treat, I may try to wait approx. 5 mos til after the holidays for various reasons including yes, stereotypical I know, but going to Disneyland first . I kid (sort of) - we all know how serious this is, but I have significant leave coming due after the new year and could take that if needed post procedure to give myself some time to adjust.
Family is asking for feedback on what happens if rupture during that time and I assume it’s just treated like any other rupture with appropriate interventions but don’t really know for sure.
If it’s any consolation (I don’t have an aneurysm, I happen to have a brain AVM but the risks are very similar and I hang around here to help @Moltroub from time to time) I went on a family holiday from the UK to Chile for two weeks at the point that I thought something was amiss with me. I’m not sure it’s a wise idea overall but I think we all do it!
We were going on holiday to see my niece who was getting married to a Chileño. It didn’t seem as optional as Disneyland.
Being in the UK, I still had to wait a further year to get through the various stages of diagnosis and waiting on the elective neurosurgery list. While I was waiting, I worried in exactly the same way. The steps I took to manage my own worry were mostly:
Argue with my boss that I was undoubtedly safer at work among my colleagues than I was if I worked from home (alone) for 8 or 9 hours a day. (My AVM was causing me to be a bit dizzy and she was concerned I might have an accident at work. Fortunately she agreed with my assessment that I was safer in company than alone).
I bought a silicone medical wristband with things like my name, date of birth / hospital record no, medical condition, my wife’s mobile phone number and a blunt instruction “In case of stroke, call emergency”. I decided that having such a thing might provoke the less well educated to help me if I was found inspecting the carpet all of a sudden. I was happy to have anyone’s help, everyone’s help.
This was before the days of mobile phones having a “medical emergency” section. I’d use that as well these days.
So I think you can help yourself in these ways, even if you feel you want to delay surgery.
Chile sounds like a blast (on the travel bucket list) and congrats to your niece.
Disneyland is a gift for my nephew Boden. As “Auntie Niffer” (my handle is my old nickname from playing Counterstrike back in the day if we have any gamers among us) I get to take each one of my sister’s kids to Disney for their 12th bdays. Boden is planned for December 2024.
I’m extremely lucky that I get to work from home - a rampant introvert with some already interesting neurodivergency pre-Pazuzu, I’m not sure I’d be cut out for an office setting anymore actually. Have been a remote worker for most of the last 14 years. But I’ve got retired Mom at home, and husband Stephen is an EMT/park ranger and works variable hours, so more often than not someone is home with me.
I use a RoadID bracelet (https://www.roadid.com) and now wear it 24/7. First responders call a toll free number to get all your info including medical history and even advanced directive if you so choose.
Updated my profile to include info about my unruptured aneurysm. I bought these when I started endurance riding 7 years ago and one band went on my wrist and one band went around my horse’s leg in case we got separated (always a risk with horses darn it).
Sure do appreciate the reply and you being here to support the amazing @Moltroub. Damned if this thing isn’t pretty isolating. It’s hard not to talk about it allllllll the d*mn time which freaks the family out a bit, but there are things I feel like I need to know, and things I want to say that it feels like I can only say here, with people who understand.
When I was at a similar stage to you, I found reading a (different) forum (for AVMers) frightening and encouraging in about equal measure, driven by reading about people post rupture who were in trouble and yet understanding how people get on and what the procedures etc are. So I think this 50:50 frightening:helpful is pretty normal. Just visit here as much as it helps. If it gets difficult, step back a bit but know that there are people here to share their experience etc when you’ve got concerns.
. I kid (sort of) - we all know how serious this is, but I have significant leave coming due after the new year and could take that if needed post procedure to give myself some time to adjust.