New Member - Jojo AKL, NZ

Talofa lava,

My name is Joanne (Jojo) and I’m excited to join this supportive community. I recently received a diagnosis of a 12mm left ICA aneurysm, which was discovered incidentally during an MRI for a different condition. I don’t have a family history of aneurysms or bleeds, I do have some related health concerns, including headaches and subfertility.

I’m here to learn more about managing my condition, share experiences, and connect with others who understand what it’s like to navigate life with a brain aneurysm. I look forward to being part of discussions and supporting each other on this journey.

Manuia le aso

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Glad you’re here :smiling_face: you are definitely among friends here :heart_exclamation: Will keep you in my thoughts and prayers. :folded_hands:There are advances in this area… I’ve had a rupture 20 years ago and it was clipped… My new one will have a stent at the end of the month. I’m missing a few vessels in my brain and create to much pressure in my anterior communicating artery area. Recovery is different for everyone… my first took a year because of the clipping but this one should only be a few weeks to months. :smiling_face:.

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Thank you so much for your reply. I guess most dont realise until either a rupture or routine scan for another condition. So I’m just waiting to see what the outcome is from this 16wk wait to see Neuro. I get constant headaches/migraines unsure exactly what the correlation is to my aneurysm, hopefully I can find out sooner rather than later.

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I really hope they can find out as well, being in limbo is rough. They have made so many advances in this area. The device I’m having put in at the end of the month is in clinical trial. I bet you are gonna do great & have a good recovery :folded_hands::blush:

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This last one they found because of a tooth abscess… My face was severely swollen and the access was causing facial droop, they did MRI and found this new one. You’re right most don’t realize until after it ruptures. I didn’t 20 years ago or this time.

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Thank you I hope and pray too. Also are you based in the US? Are there many other people from other cpuntries in these forums too?

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I’m sorry to hear about that second aneurysm. I wish all the best for you moving forward with this clinical trial. And hope to stay updated on here with you and others.

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I’m in the US. Where are you? There are people from all over the world I believe.

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You figured it out and didn’t need me! Fantastic! I was reading your story and thought we’re on opposite sides of the same coin. I ruptured and they did the MRA for pituitary and found an adenoma that is constantly changing in size. As @MBSch has said, the medical science has grown leaps and bounds. I eventually received a stent about 7 years after I ruptured.

We do have folks from around the world, I’m thinking we have members in every continent. Some are active for a time and leave for a while. Some stay and don’t respond but do read topics. I understand a lot of folks on the internet read our topics but don’t join.

Many of our members are told headaches and migraines are not related to an aneurysm, whilst others have been told about sentinel bleeds. I never had a migraine until I ruptured, it was a doozy of one. My headaches usually were from stress in my last job, sometimes allergies or not eating/drinking enough. I was told to hydrate, rest, hydrate some more, eat protein and hydrate some more.

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Hey! So I actually also had an incidental finding. They were checking because I had a pulsating sound in my ear, and accidentally found the aneurism. I waited for 3 months to see neuro. When I got to them, he actually said that their office has a policy that anything aneurysm related should be an immediate appointment because making someone wait that long increases anxiety, blood pressure, etc and makes matters worse. The person at the admin office had no idea this was something they needed to prioritize. Is there any way you can call back to see if there’s a way they’ll see you sooner? I’d let them know you’re having headaches. Or maybe go back to the doctor who originally diagnosed it and get an emergency referral to see if that helps (I had an emergency referral and it didn’t make much of a difference, but might in your case). The waiting part is the worst, and I went down a rabbit hole of what ifs and what could be. I was getting headaches pretty regularly and even went to the ER at one point because I was so scared. The neurosurgeon apologized and said that long timeframe of waiting should have never happened. Anyways, I wish you the best and hope they’re able to see you soon!

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I am in Auckland, New Zealand, and that is great to hear this is open to all over the world.

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Yes I did, but thank you so much for responding. Wow that is interesting. Yes my 4mm adenoma, with the 12mm brain aneurysm unruptured. I had an appointment with Endocrine yesterday and it was to discuss a recent blood hormone test I did recently, which we never go to discuss. I understand the medical side in terms of tools and technology has grown, in NZ however the wait times are at 16 weeks, and I don’t if they will get back to me any time soon, hopefully they do. Wow did you notice a change in your memory, or how you would physically operate throughout the day post the stent?

Yes that sounds fair, I mean this is very new to me, so I would like to stay in touch and read as best I can with time allowing.

Oh wow ok, well that is interesting I haven’t spoken to Neuro yet only my Endocrine specialist, so I’m just waiting patiently. Ok, interesting how it differs from person to person. I’ve had headaches now migraines in the last few years since high school. I would like to see what they have for me when we do get around to that discussion in Neuro.

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Oh wow, ok. So my wait is approx 4 months, they say if I can be seen earlier, the likelihood is slim but would be within 6 weeks no guarantee.

I definitely agree with them on the long wait time and as you can never guarantee post telling a patient they have an aneurysm for nil stress, anxiety etc it should be treated as serious.

The lack of training with staff is unreal. I really do hope that every medical profession across the world can look to align information on diagnoses/conditions etc then at least they can give some hope to the patient that they know what they are doing.

After my discussion with Endo today, it looks like the relevant Neuro specialists want to read through my results and then come back

Oh I agree about the waiting, I’ll chat again with Endo as they did the referral. Also really sorry to hear that was your experience and things are not the same. Hope to learn and read more to understand more, and I will definitely keep this topic updated once seen.

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Hey Jojo,
My name is Merl I’m a member of the Modsupport Team here on Ben’s Friends. I’m also a former Kiwi, now living in Oz. In fact, I lived in Kingsland and Mount Eden (not the prison :wink: ) for a while back in the '90s.

I must say your 16wk wait is not unusual. In some cases, a ‘Wait’n’watch’ approach is very common. For some people, they can have an annie their whole lives without knowing, for some their annie can be very slow forming. Some medicos are of the opinion that if it is not causing symptoms then it’s better to monitor than to be operating on the brain. From my personal experience they often ‘try’ to minimize the concern, but for us, the patient, it’s not quite that simple. As was said to me "We found something growing in your brain… ..Ohh but don’t worry…’
DON’T WORRY!?!?!? Too damn late, my stress went from 0 to 100 in a millisecond.

I don’t have an annie, but rather another little nasty growing in my head. I’d been telling the medicos something was wrong for many years, but it was all minimised as ‘growing pains’ in my teens, to a drug and alcohol issue and even a mental health issue. I soon learnt it was safer to shut up and say nothing.

Add 10yrs, I’m driving down the road and the lights went out, I couldn’t see. I pulled over, called my girlfriend. She took me to the hospital, they did a scan and came out with the line “Ohh, look what we found…” as if it was all something new. I’d been telling them for years something was amiss. I saw a neurologist who recommended ‘Wait’n’watch’ approach. I was less than happy with this idea. As I say, I’d had symptoms for years and they were getting worse, so the idea of waiting was like “Wait? For what? Wait for things to get worse?”. I made an appointment with a neurosurgeon and he recommended going in and getting it out. So, they operated.

The plan was go in get it out and life goes back to normal, only that didn’t happen. They found that the growth itself was growing a bit close to brain structures I need to survive. So, they reduced the size of the mass, in theory, reducing the impact on those surrounding structures, which is great… …in theory. But the reality was that the surgery unleashed a plethora of side effects. 3 months later it was decided that I needed further surgery and a shunt, a plastic tube, was inserted into my brain to manage the fluid build up.

Since then, I’ve been on a bit of a rollercoaster of symptoms and side effects. I’ve now required 6 neurosurgeries to try and deal with it all. Each surgery has been to manage a situation and each has managed, but each has left me with what I call ‘gifts’, oddball side effects and symptoms. None of which I would call ‘Fun’. I had a regular annual appointment with the surgeon early last year. I thought it would be an ‘All fine. See you next year’ type scenario, same as last year and the year before that, only it wasn’t and they wanted to operate yet again. To say I was reluctant would be an understatement, a massive understatement. I requested further scans be done and the surgeon came back with “Well, surgery might help…” MIGHT?? it might not help too though and considering the ‘gifts’ I was already managing I was not prepared to add to that list. I declined the surgery. I understand that eventually I will have no choice, but if the best they can say is it might help, I’ll wait.

None of this is easy, no matter what the medicos tell us. We know this because we live it too and who better to talk to than those of us with a lived experience, so come talk to us.

Merl from the Modsupport Team.

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Hang in there 16 weeks can go by pretty quickly. Yes, there was improvement in my brain functioning as soon as I woke up fully from having my stent placed. So it was a big surprise to us all. I’d always had a change with each procedure be it diagnostic or repair attempt. The more angiograms I had, the harder and longer it took me to get back to where I was. I have a lot of brain damage from the rupture and although I work at improving every day, I think I’ll not get back to the point I was before I ruptured. It’s ok, life is full of wonders and mysteries.

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Just for information on headaches, my neurologist had me take 400 mg of B2, 200 mg in am and 200 mg in PM. This helped my headaches from a level 10 to a level 3. My headaches are how they found my aneurysm.

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Thank you so much for your message. I have never tried, I may see what happens with Neuro then take it from there.

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Thank you for sharing your experience. It sounds like you’ve been through a lot, and it’s really inspiring to hear and read about your positive outlook. It’s good to see you noticed an improvement in brain functioning after your stent placement. I can only imagine recovery can be a long and challenging journey, but your want to keep improving is inspiring.

It’s totally understandable to feel that you might not get back to where you were, but your reading how you are embracing life’s wonders and mysteries is amazing. Keep focusing on the positive outcome and progress you make, no matter how small, every step forward is a win.

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Hi Merl, it’s great to hear from you! It’s always nice to connect with other Kiwis, and more especially those here in this forum, even if you’re now across the ditch in Oz.

Thank you for sharing your story. It’s reassuring to know that a 16-week wait isn’t unusual and that a ‘Wait’n’watch’ approach is common. I understand what you mean about the stress and concern receiving this kind of news. Your personal story really highlights the emotional impact of these situations.

I’m sorry to hear about your long journey to get a proper diagnosis. It’s frustrating when symptoms are dismissed, and you are left to feel like no one understands or wants to listen. Your perseverance though is truly inspiring.

That must have been very scary. It’s good that you finally got some answers, and that the neurosurgeon acted. Although, again the ‘Wait’n’watch’ approach given your worsening symptoms not being the best response or outcome.

It’s disheartening when things don’t go as planned, especially with something as serious as brain surgery. The side effects and need for additional surgery must have been very challenging to deal with, and to this date I can only imagine the person trauma this caused.

Your strength throughout the journey of all that has happened is truly inspiring, considering the multiple side effects that followed. It’s understandable why you would be reluctant to undergo further surgery with uncertainty on outcomes. So, to wait makes a lot of sense given your experience.

Thank you for offering your support and again sharing your story. It’s comforting to know that there are people here on this forum that understand and are willing to help others through similar experiences.

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Hey Jojo,
Just know you are not alone in all this. It can all be VERY isolating, others often don’t understand. I’ve lost count of how often I’ve heard that “Ohh my friend ‘John’ had one of them… ..he’s OK…” type of response or “Ohh headaches, I get headaches too…” sometimes I want to respond with a “Not like these you don’t” as my head is about ready to explode with pressure, but I bite my tongue and just smile and nod, whilst thinking ‘He has no idea’.

Just know we are here when/if you need.

Merl from the Modsupport Team

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