Hi all,
I’m 29 and had an unruptured vertebral artery aneurysm clipping in Feb. 2023. After the procedure, I had about a somewhat rocky recovery, with a few seizures (and strokes - unclear exactly when they happened but I’ve had at least 3), a 6 week bout of double vision, constant headaches etc. I’ve since recovered, but do struggle with some minor memory lapses and stuttering.
A year+ out, I was just diagnosed with a vertebral artery dissection and pseudoaneurysm, and I’m getting a flow diverter placed next week.
My question is - how do you tell your aneurysm story? when catching up with people that I haven’t seen in a while, I try to raise it if they ask about what I’ve been up to or why I no longer distance for example. People are inevitably caught off guard when I say “well I had brain aneurysm surgery last year - but I’m fine now”. Some friends have commented that I “tell my whole life story” when meeting new people - but it feels impossible not to. This surgery and ongoing recovery/complications have altered my life and my fiance’s lives forever.
Since I’m so young, my friends are all (thankfully) healthy, and I often feel the need to minimize or not mention my struggles at all. But at the same time, it’s very isolating. Is there a formula for sharing such a big part of my life, without making people uncomfortable?
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That’s a hard one isn’t it? It’s taken me years to not be the first thing out of my mouth and I’m a good deal older than you. I think most people have no idea what a brain aneurysm is in my experience. They know about brain tumors, but not aneurysms.
My accent that I received after my second coiling is what folks around my part notice first and then they ask where I’m from. Actually it’s more of “where was you born?” I used to say I was born in HA, raised in CA and have lived in NC since ‘87. Sometimes folks will say that’s where your accent is from. So I correct them and it leads to my story because my rupture inevitably caused the FAS. I had learned to just say I have a Wake Forest accent and laugh. Now I just ask them if they’re talking about my accent.
My feelings are if they had something as serious as brain surgery, it would be their focus as well. Just like a broken bone or having a baby, people talk about it a lot because it’s important to them. Your brain surgery is important to you, it’s ok to talk about it. I remind people all the time if they get the worse headache of their life go straight to the ER, do not go to bed or ignore it, do not take aspirin. Do call 911 so you’ll be seen faster when you get the ambulance ride. It’s also important to educate others about cerebral aneurysms so they can hopefully avoid a rupture.
I would also tell those friends who are put off about it that your craniotomy is but a part of your life story, but it’s a big one! Are they really friends if they’re uncomfortable? I think that’s on them, not you. I have always held the belief, if someone has the cojones to ask a question, then be as brave and tell them.
As for your stuttering do you tap out a rhythm on the table or your knee? When I was in ST, the therapist taught me first to wave my hand like a music conductor and then I graduated to the tapping method if I’m sitting down. If standing, I revert to waving my hand ever so slightly but the worse it gets the more I wave. Sometimes if I sort of sing my words, I get them out well.
The two of you are not alone. Remember we are always here for you, we have your back!
Good luck next week! Please update us when you can.
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You keep Iit to your really good friends. Most people who have never had a major life health experience like you have and have also experienced something that puts you on a different level then most would never understand. Hard to comprehend. Some do. But most don’t. You have become Smarter, knowing you can conquer the worst. You so don’t t need to explain to people your story. Many don’t understand. So give yourself a break, breath deep. Sometimes you know who you can talk to. Sometimes it’s better to just keep what you have been through within your own reach. I have learned to do this. I have been through a lot too with my aneurysm story. You are young with many many years to heal and live a good life.
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Welcome to our group, I am coming up on my eight year Anniversary, I still have double vision, but I was prescribed “Prism Lenses” but then again I already had prescription glasses so the prisms were just an add on. I have no vision problems as long as I wear them, everyday life is OK. My first few weeks post-surgery I had terrible headaches, caused by Cranial Pressure apparently! But after having a shunt put in they went away I still have short term memory lapses, but my long term memory is good, I tend to write important things down, and add all my appointments to my calendar. My sympathies about the stuttering, I have never had this but what Moltroub says makes sense. I have no problem telling people who have never had a major health problem my history and I tell people who are interested to make sure to seek help if they get a really bad headache.
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Good Morning, I haven’t logged in to the site in a while. Thankful your procedure has went well or the first one. We are going to believe that the complications are over and the one coming up will fix all issues. You will be back to your normal life in no time. I had a Brain Aneurysm and mine was repaired by coiling it. 21 days in the ICU with a tube in my head. I thank GOD for putting the right people in place to help me. You are blessed to be able to share your story. I’m glad you can remember to share it. If you feel lead to share do it. Take care 
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Have you had your flow diverter placed yet? I’ve been thinking about you and hope you’re doing well!
Never be ashamed to tell people your story. If they don’t want to hear it they weren’t worth the breath of trying to inform them.
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Thank you all for the extremely kind replies! I’ll admit I teared up more than once while reading this thread. I wrote that post in a particularly low moment ahead of my flow diverter procedure, and I’m so grateful to you all for sharing your stories here as well. It’s a reminder that everyone’s aneurysm experience is different but we’re the lucky ones who are able to tell our stories.
I had my flow diverter placed last Wednesday and aside from some neck pain and headaches it went smoothly and thankfully, I’m on the mend! Now that I’m on the other side of this latest procedure, I’m trying to focus on the gratitude I feel that my aneurysms were found and treated before rupture. Next step for me will be genetic testing to see if I have a vascular connective tissue disorder (fingers crossed that I don’t!) but until then I’m going to try to enjoy my overall good health. Wishing you all the best!
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