Diagnosed 9/17 unruptured brain aneurysm

[Kelseya28]

Hi! I am 37F recently diagnosed with a 2 x 2 mm right inferiorly projecting posterior communicating artery aneurysm. My report did not identify the shape. I initially went to the ER on 9/16 for a severe migraine that had started 9/15, facial numbness/tingling, my vision on right side was off, and neck pain. I was admitted to the hospital where I had a CTA with and without contrast of head and carotid artery and MRI with and without contrast of brain and cervical spine. The CTA identified the unruptured brain aneurysm. I also did a lumbar puncture to make sure there was no bleeding which there was not. I was released on 9/17 after receiving the diagnosis and the plan is monitor the aneurysm and meet with my neurosurgeon yearly. I wasn’t told things to avoid like certain medications, activities, food/drink so I left feeling very uninformed. I am in the process of getting a second opinion and hopefully more information on how to proceed.

And additional struggle is, I have severe health anxiety and this has made my anxiety almost unmanageable. A year seems way too long to wait and see especially with something that can be so life-threatening. I started seeing a therapist recently for my health anxiety for other health issues I was having before I received a diagnosis of a brain aneurysm but we have only met once so I haven’t learned any tools to deal with an actual very scary diagnosis. I don’t think it helps that when I was discharged from the hospital I still had and currently have a migraine, neck pain, and facial numbness/tingling so since discharge I have been constantly thinking something is happening with the aneurysm and it’s about to rupture.

My purpose for this post is to get ideas or hear from others on how to live a full and happy life while waiting to see if your aneurysm does nothing, grows and needs surgery, or eventually ruptures. All is terrifying to me. I should also mention I am a 1st grade teacher and I am worried I can no longer do my job as the added stress of the job seems like a bad idea. My husband and I have no kids and he travels for work for weeks at a time which I was ok with and actually enjoyed my independence but now I worry about being alone if something were to happen. We have no family in the area, so unless I move in with friends while he is gone, I am alone and that adds to my overall fear.

Thank you for reading and letting me vent!

[Moltroub]

Welcome and thank you for starting a new topic, kudos to you! We understand the concern of a brain aneurysm diagnosis and the anxiety that can bring. I highly recommend learning some type of relaxation breathing and practicing it all day long so it becomes a natural part of you. When you need it, your body will automatically do it but it does take practice multiple times a day, every day in the beginning so for several months. Also if you know your triggers do it right away, if you know what your body does when it first senses stress or anxiety start your relaxation breathing right away. Some signs can be making a fist, clenching your jaws, tightening of your stomach, holding your breath - not sure what you do but there’s a myriad of tells people can have.

I personally do not like a lumbar puncture and I’ve only had one several years after I ruptured. Doc told me a story and said he was really good at them, trust me when I say he wasn’t. I told him he needed to go back to school.

First Grade teacher! How wonderful is that!? Little munchkins all learning something new every day. Good for you!

When do you get to see a neurosurgeon? I know the UK is very different than the USA or Canada, though more like Canada I think than here in the States. Do you have a neurologist for your migraines? There’s so many different types of migraines it’s insane isn’t it? I have learned to follow my Neurosurgeon’s mantra - hydration, protein, rest, hydrate some more, repeat. It helps me, perhaps it will help you.

Be careful when you do an internet search, AI doesn’t always get it right and can be frustrating. Keep within trusted websites for the UK. I typically use WebMD and if I need more information I go to our country’s NINDS found here for the latest research Neuroscience at NIH | National Institute of Neurological Disorders and Stroke. I try to stay with the last three to four years as things change so much. I don’t know what the UK site is, sorry about that.

From what my Neurosurgeon has told me in the past, many aneurysms never rupture so keep that in mind. We have a lot more folks on the watch and wait team than on the ruptured team so that’s in your favor. Most of them are told to go live their life, some are told to keep their BP in check or lose weight or the myriad of other things we should be doing anyways to lead a healthy lifestyle - don’t smoke, don’t do drugs, don’t drink heavily, control stress etc. most of which is in our control, if not there are experts to help us out.

Hang in there, be patient for others to reply as we’re covering a lot of different time zones.

[ModSupport]

Hey @Kelseya28 ,

Welcome to Ben’s Friends. Lots of good people with a lived experience here. My name is Merl and I’m a member of the moderator support team here. I don’t have an annie, but rather another little nasty growing in my head and as a result I’ve required a few neurosurgeries over the years.

I’m sorry to say it like this but that ‘Wait’n’Watch’ approach is not uncommon and in some cases is almost routine. Some people think surgery will ‘fix’ it, but if surgery can be avoided, I’d recommend it. My first surgery was supposed to ‘fix’ it, but it didn’t. In fact it set off a cascade of issues and neurosurgeries.

Some medicos are of the opinion that size is the determining factor, some believe location is the key, some think the patient’s symptoms are paramount, but the reality is that all of these factors need to be taken into consideration. For some people even small changes in the brain can have a huge effect.

Why do I say this? Because I too got that ‘Wait’n’Watch’ recommendation. And I too was not happy with the whole idea, Like “Waiting?? Waiting for WHAT?? For things to get worse??”. I was already symptomatic. The idea of ‘Worse’ was not an option. So, I went hunting for a 2nd opinion. In fact I got a 2nd, a 3rd and a 4th opinion. I wanted to know “What were my options? Were there any other options?”

Now, I must warn you, every doctor/specialist/medico had a slightly differing view, a slightly differing approach with everything from ‘Leave it alone’ to ‘Chop it all out’. As I said I was already badly symptomatic, so leaving it was not an option for me. But then to chop it all out was risky, as this thing is growing too close to brain structures I need. One of the neurosurgeons suggested reducing the mass, reducing the pressure and that was the option I took.

Your anxiety is normal. Well, it certainly was for me, then being told to wait…OHH HELL NO!!! So, I turned that anxiety into action. Get the answers. This was back in the 90’s and that world wide webby thing (the internet) was all kind of new. I went to the state university library and started researching. Sometimes we can go along to these specialists, people who deal with this sort of thing every day, and some can be VERY clinical, some almost dismissive, very disconnected. We can’t disconnect because this is happening to us and it’s all very real. I found if I could keep myself informed, keep my mind occupied my anxiety lessened (somewhat). By being informed I could then ask informed questions.

Seeing a therapist is a good thing. Bottling the additional stress up can be VERY self destructive. I would bottle it up so much, the bottle would explode and everybody got covered in it. OHH NASTY. Don’t do that. I don’t know how my poor wife put up with me.

You vent as much as you need, we all need an outlet and where better than with people who have been there themselves, Us.

Merl from the Modsupport Team

[FinWhaleFan]

Hi @Kelseya28 and welcome! We are so glad to have you here!

Unlike you, I was not aware of my aneurysm until it rupturred, so I was blissfully unaware of what was going on inside of me, so I can only imagine the stress you must be going through. I am incredibly sorry for that!

Just a few days ago, I stumbled into a recorded BAF webinar, specifically for those on watch and wait (linked below). It is still on my to’do list to finish, but the parts I did watch were interesting, as it helps to understand how doctors figure out comiing to a watch and wait recommendation, so hoping it helps you too!

ICYMI: 2023 Webinar for "Watch and Waiters"

Hello, all! While on my walk tonight, my phone started talking to me. When I pulled it out of my pocket to turn it off, this video was playing. I thought of all of you who have gotten a “watch and wait” diagnosis, as it is hosted by our own BAF! BAF Webinar (2023): Living with a BA Diagnosis: Struggles of Watching and Waiting I have only watched the first 10 minutes or so, but I found it interesting despite the fact that it is for the unruptured folks, unl…

Second, I just want to highlight what @Moltroub mentioned which is relaxation breathing/meditation/mindfulness. It was recommended to me to practice as part of my recovery, and my wearables show it does help in reducing my stress and anxiety!

Of course, there are all the popular ones out there, but two I like to highlight are:

1. A quick 1-minute video showing how to do Box Breathing. I understand (US) Navy SEALS use it, so if it is good for them, it will work for me! Repeat as often as needed.

Box Breathing – 1 minute in length

2. Second, a US-uniiversity backed institution developed a free meditation app that is East-meets-Wesr, since it intersperses meditation wiith science about how our braiins work. Fascinating!

Try Our Free App for Guided, Mindful Meditation | Healthy Minds Innovations

Finally, our friends across the Pond at the Hereditary Brain Aneurysm have a support guide on living with health anxiety, so you may want to check that out as well.

Support | HBA Support

Of course, we are here for you so as you have questions, or need to vent, please do so - we are happy to help!

Fin Whale Fan

[DianeB]

I had an unruptured right ICA terminus aneurysm found incidentally when i had a MRI of my sinuses last year that was 2mm. First neurosurgeon I saw told me i had to get it fixed immediately or i could die! Didn’t have any peace about what he was telling me so I got second opinion. That neurosurgeon was totally opposite. Said 2mm rarely rupture and are more concerned if it’s 5mm or bigger. Could wait and watch for six months and see if any change so that’s what i did because i just had a cervical fusion two years ago that had to be redone 11 months later cause the bottom screws on both sides broke for no reason! Iwas not ready for any more surgeries. The aneurysm got bigger after six months so i had a WEB device put in. My anxiety was thru the roof after the neck surgeries but compared to those the fix for the anerurysm was a piece of cake. All done through the artery and only stayed overnight in hospital. That was in May 2024 and just on baby aspirin. Follow-up MRA every year to check it cause i don’t want more angiograms since i had so much radiation from x-rays , CT scans and angiograms the last three years Get a second opinion and maybe even a third. I did research online before seeing anyone and what i read lined up with the second surgeon. Try not to focus on what may or may not happen We are not in control. Trust God and He will work it all out for you!