Hello i'm new here and don't know what to expect

New to the group I got diagnosed with 3 brain aneurysms 2 on the left side same size and 1 on the right small at the moment. Don’t know what to expect scared but also accept whatever comes my way I was told it’s rare for there to be 3 most common is 1 or 2 so the neurologist told me not on any meds or treatments not sure if im supposed to be on ant so just wondering what do I do now? I’m in southern California latino I’m 38 in a few weeks and I also have depression and anxiety such a millennial thing lol so yeah hope to chat with some people and get more info and knowledge cant believe everything that’s on the internet now and days lol

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Welcome @thakollector!

It’s great you found us. Is there anything we can talk to you about that might help you get a bit more used to the idea? Just ask or talk about anything you need.

Very best wishes,

Richard

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Yeah I’m just wondering if I should prepare for what’s to come or just continue life not sure what my expectancy is since I have 3 and they just want to monitor them for now

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Well, we definitely have a bunch of people who’ve been recommended that “watch and wait” is the plan for now. It’s not necessarily an easy plan to follow but it seems wise to heed it when it’s the recommendation.

Don’t write yourself off! I don’t think that’s a useful way to look upon things. I felt suddenly mortal, having had the blessing of taking my health for granted for fifty years. I think my trials with a similar situation (I’m an intruder from another support forum who lends a hand to the moderators here from time to time) made me realise that I’d had a blessed fifty years. I did elect to have similarly risky surgery (though I think a brain aneurysm operation does carry higher risk than my condition) and came through it perfectly well. It took me two years to feel “normal” but having had my op, I can honestly say I’ve resumed life as normal. I’ve been lucky to be able to do so with no long term side effects.

I hope some others will be able to share their experience of going through very much the same as you.

Best wishes,

Richard

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I got to a place in life where I wanted to understand myself better so I signed-up for therapy. That was 6-months ago. And then, wham, I got diagnosed with a cerebral aneurysm – surgery in 23 days. The focus of my therapy has changed from “why I hate my mother” to gaining perspective about what’s important. I encourage therapy for anyone in our position. I like to read research and review journal articles at scholar.google.com. It’s geeky, but not as dramatic as the rest of the internet.

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Ernie,

As a member of the 3 aneurysm club, not sure exactly about the statement that this is “rare”. Nothing against your neurologist, but I’d like to hear statistics on that, or see the study to back it up. I’ve heard 20% of patients have more than one but I wouldn’t confidently toss that number around myself. And since those of us with multiple aneurysms are periodically rechecked for new developments, I’d say it’s more common than that physician believes. I also don’t believe in “blaming” a patient for what medical science doesn’t fully comprehend, and while much research exists on aneurysms, it is still not fully understood. So call me annoyed to say the least by such a statement. And annoyed is probably an understatement.

You are far from alone. You and I are not the first to have 3, and we will not be the last to have them. We will also not be the last to live to tell about them, so I advise you to look forward with confidence, not negativity. You may not realize it now, but you have the upper hand. You do not have a secret lurking in your body that can sneak up on you. You can sneak up on it and if the need arises, intervention can prevent a worst-case scenario.

Have you consulted a neurosurgeon? There are some very experienced neurologists that deal with aneurysms, but their knowledge tends to be more limited - the very experienced ones tend to be found in the top institutions that gets a lot of aneurysm “traffic” so to speak - meaning those of us that seek them out because we want to find all we can and get our information from the best of the best. The REAL experts are the neurosurgeons and interventional radiologists that take the treatment journey with us. They are there for ALL of us - they take the reins and determine what is high/medium/low risk, advise on when to intervene, and tell us when to stand back and go live our lives. They are the ones that are there to see our fellow aneurysm patients rushed into an ER with a rupture and dive in to save the day. If you have not seen one yet, do yourself a favor and do it. I have trusted mine with my life and you need to find someone that can do the same for you.

I suggest you get your images in hand and at least contact some large hospital systems around you and upload your images to them (they can guide you) and request a consultation with a neurosurgeon. You can alternately, or additionally contact some of top institutions and check on a virtual consult or hit the road for another opinion. I consulted a few when mine were discovered. If you are struggling with where to choose, I can share some more information or you can search your area on this site, or post asking for recommendations in your area.

You’re early in this, so it is a LOT to process. But before you know it you will feel more knowledgeable, and therefore more in control of the situation. Getting there from here to there isn’t fun, but it will happen nonetheless, and your outlook will change along the way based on better feedback from experts. Do not allow depression and anxiety to get the better of you — you are normal and your emotions are normal, so reach out for help and support in that area at any time. But by all means get some further advice on the aneurysms as well. If the consensus is still watch and wait, do it from a position of confidence (well, let’s be honest, there’s going to be varying degrees of fear and trepidation mixed in, but you want to feel as good as you can about it).

Sorry you’ve joined us, but if help and support is what you seek, you’re in the right place. You’ve got this. Here’s to you turning 38 in a few weeks, and looking forward to another 38+ years to follow. You will not be the first aneurysm patient to reach a ripe old age and die of some boring traditional malady that plagues the masses.

Judi

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Thank you so much and I did see a neurologist and that’s why when she said the rare thing I was just like oh ok but didn’t take her word for it I am looking around for a second opinion even third so thank you for those ideas I wouldn’t have even thought of that I don’t have much support but one friend who lost his best friend to a brain aneurysm so he’s been helping me other than that it’s just me myself and I and well the people on here have given me lots of information and kept me positive

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Glad to hear it - make sure you see a neurosurgeon (or an interventional radiologist that specializes in aneurysms)!

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And one more thing Ernie - do not feel as if you arriving on the scene hat in hand begging for an appointment. As an aneurysm patient, these surgeons are there for YOU. They will take you and your concerns very seriously. If you think they are not doing that, move along because you’re with the wrong person. These are very serious and very professional people that understand what they are dealing with, and they will not minimize you or your concerns. Any questions you have ask, ask, and ask until you are comfortable. And keep us all posted!

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Hi @thakollector welcome the the ‘club’ :slight_smile:

Whoo doggies! THREE? That’s exciting, and not in the fun way.

Great job making your way here. You’re not alone!

As @Judi says - do not pass go, do not collect $200, find a neurosurgeon or neurovascular surgeon. Neurologist is great for lots of baseline brain stuff (including headaches many of us have) but doesn’t necessarily specialize in assessment, treatment, and intervention of aneurysms.

You want the big guns looking at all three of those :slight_smile:

Here’s a post with a TON of info on virtual visit and second opinion providers. You can see a bunch of these doctors/institutions speaking on the BAF Youtube webinars, which are awesome.

Here’s the full link: Aneurysm 'Second Opinion' Program Providers List (Virtual for Non-Local Patients)

Here’s the BAF Youtube channel: https://www.youtube.com/@BrainAneurysmFoundation

If we can be helpful holler!

What sizes and where are your aneurysms (if known)?

J

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wow yes thank you so much thats a lot of help thank you @Judi and @meaniffer

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Welcome to this safe place to talk about everything you’re dealing with. I had 4 brain aneurysms. 2 on the left and 2 on the right. My dr did the 2 on the right one month, it’s 8 years this month! Then he did the other 2 on the left the next month, 8 years in a few weeks! I had to have 5 PEDs for the 4 aneurysms. One had a larger “mouth” so needed 2 to close it. I’ve been doing fine except for some balance issues at times but again I’m 67 so it could be that too. Hang in there and come to this forum to talk or ask what we’ve been through. These people have been great when I needed to ask questions.
Take Care.

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100% agree with everyone here. I had one that ruptured and just did another CT at 18 months post rupture to check the status (all clear so far). My mom has had four aneurysms, one of which ruptured, and she is now 73.

Beyond my personal interactions with doctors, I’ve worked in hospital marketing/communications for 15 years in SoCal, and have talked with lots of specialists (before and after my own experiences). Not everyone has the same amount of knowledge about our condition. Agree with everyone who says find a neurovascular specialist. They will be much more in tune with what is common or not common.

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