Hello everyone, I recently joined the BAF Support Community. I feel very fortunate to have found this group and truly appreciate being welcomed here.
I was diagnosed and treated for two brain aneurysms in 2025. A PED was inserted, and both aneurysms have since fully occluded. I thought I’d share a couple of takeaways for me from this experience, in case they might be helpful to someone else.
I have a sister who experienced a ruptured aneurysm in her 30s. She is doing well now, though she does have occasional seizures. My father passed away from a brain bleed, though it was never confirmed whether this was due to an aneurysm. About 20 years ago, because I had a first-degree relative, I was screened and everything was clear. In 2024, I asked for another scan since I now potentially had two first-degree relatives affected. That scan is when my two aneurysms were discovered.
One takeaway for me was how important it is to advocate for yourself and trust your gut!
Another was realizing how powerful it can be to share your experience. When I’ve talked about my journey, I’m often surprised by how many people mention knowing someone who has had a cerebral aneurysm. And when I bring up the familial aspect, it often comes as a surprise.
I wanted to share this because it felt like it might be helpful, and because it’s comforting to be part of a group that truly understands. Thank you for making this such a caring and supportive community!
What a great way to introduce yourself, well done! My neurosurgeon is a strong believer in a genetic trait and insisted my siblings and their offspring have scans. Some of them said it wouldn’t ever happen to them, some doctors refused to order a scan just to check. I am the first in my family tree that we know of, but someone has to be, right?!
Maybe with more folks like you spreading the word, the medical community and health insurance companies will see it’s much less expensive to check than for one of us to rupture.
Thank you Moltroub! Nothings ever easy is it! I have 2 sisters, I am the oldest. The youngest had the ruptured annie, the other had to jump through hoops to get the test and insurance taken care of. Thankfully her test was negative. But I really drove the idea home with her about the importance of having the test ASAP. Thanks for your response, I have read quite a bit on this forum and will continue to do so. It is enlightening and educational and hopefully I can contribute in a positive way. After all that’s what it’s all about - sharing with, caring about and helping others.
I am very humbled by your willingness and energy in sharing. That is the one thing I didn’t do until recently – and even now I am very careful to whom I share my history. My family has a history of overcoming challenges and staying quiet about it, but I am realizing only recently that sometimes it is very important and healing to share your story with others. You never know what challenge people are working through or trying to overcome, and sometimes your story is exactly what they need to hear. I am working on the sharing, and this forum has really helped me fell welcome to do so. I am glad you are joining and sharing in that welcoming. Thank you for sharing you very valuable points, too.
Good for your sister and you to get her images! Well done to both of you! Maybe one day Congress will get off their lazy duffs and agree to pass Ellie’s Law which is asking for a pittance of tax dollars on aneurysm research. Research to me, is a gathering of data. If the medical community could get reliable data, then in my damaged brain insurance companies would see the benefits of agreeing wholeheartedly to have family members tested.
Whilst I no longer attend Lobby Day with the BAF and The Bee Foundation, I do take the small amount of time to send emails to the elected officials from my State, so one Congessman and the two Senators. I do believe if there were more constituents hollering at them, they might pause long enough to not only hear, but listen. The only way the majority can holler is to speak up in emails which their health advisers get I think. Then from the health advisor to the politician. Why do politicians hate to be called politicians isn’t that what they are? And don’t make the mistake of calling a Congressman an Assemblyman, they hate that too! Semantics is overrated to me but not them. I like a spade to be called a spade now. There was a time I did quite enjoy semantics but I’ve lost those words and understanding of innuendos, so I need things black and white.
Seemed each year I went to Lobby Day, one or two of our elected officials would share they also had a family member either pass away or had ruptured or one found incidentally. I recall one Congressman from TN whose niece had recently died yet he didn’t say is aye when the call came. I know he loved his niece because he told me with tears in his eyes. His feelings embarrassed him and he became gruff in manner. I felt for him, to lose someone is quite difficult. Maybe if they’d stop their foolish porkbarreling voting style it would get passed. But that’s wishful thinking, I do it a lot.
So send out emails, have your friends, family, associates, acquaintances, and strangers send them to. Send them every year until they start to listen.
You’re welcome KrysG, I agree it may be healing to share - everyone has their struggles, and it may be difficult for a person to open up. I believe that sharing leads to sharing, so in many instances if you initiate the share, the other person will be comfortable in doing the same - so we are helping them without always realizing it. So it can be a win - win, and a learning experience! Thank you for reaching out, it means a lot to me, I wish you all the best and I’m here if you need/want to chat in the future