I was just diagnosed with a 4mm communicating artery aneurysm. I had the MRI, and subsequent MRA, due to a constant slight headache, my eyes feel like they are going to pop out (like when you’re upsidedown), and my continuous tinnitus (I’ve had for years) is very loud. I’ve had these symptoms for over a month now. My appointment with the neurosurgeon isn’t for another 2 weeks. My primary care doc couldn’t tell me if my symptoms were related to the aneurysm and I’m kind of freaking out. Anyone else have similar symptoms?
Hi Melissa, I’m new on here too, from Wales. I had an MRI last August but I only got my results last week when I called my GP for something unelated. I’d had my symptoms for 2 months before my MRI and went away a month after it. Because I hadn’t heard anything from the hospital and the symptoms had gone I presumed all was ok. However, initial report done by the the radiologist said left extracranial ICA abnormality (and recommendation for further investigation into possible atherclerosis) plus a 2mm ACOM aneurism. I did see a private surgeon last Friday and saw my MRI and you could barely see the anni but you could see the irregularity with the ICA. He recommened an ultrasound to check blood flow in ICA and CTA for the anni.
My symptoms started 2 days after my 2nd Covid jab, starting with a hangover type headache and pulsatile tinnitus. Over a few weeks I started to get vertigo type symptoms and my left arm felt heavy and weak and tingly. All this stopped by September and I have felt well until the last few days, feel unsteady again, which (hopefully) am putting down to anxiety, plus I have given up caffeine.
I haven’t put my story on here yet, I haven’t felt ready to, but I’ve been reading others stories and I am taking a lot of comfort from the support and love which is given xxx
Thank you for sharing! It’s nice to know we are not alone. And, as an anxiety sufferer, as well, it’s sometimes hard to know if it’s that or something more serious. I hope you get good news at your follow-up!
And you Melissa. What date is your appointment?xx
My ultrasound is the 28th. Let me know how it goes. In the meantime take care of yourself. Wish I could offer some help and advice but am sure someone else on here will soon xxx
Welcome to BAFsupport! It’s great you found us.
I’m a moderator from one of Ben’s Friends other patient communities, so not perfectly familiar with aneurysms but very familiar with brain artery or vein rupture risk and all of the worries that go along with that. As you’ve probably noticed, we are a global community, so different groups of people reply at different times of the day. In my community, the weekends tend to be busier with people catching up on activity than in the week.
I’ve nudged our BAF moderator @Moltroub and I’m sure she’ll say hi soon, though she has been having trouble with notifications or emails going astray, so I’m trying to get her set up right.
I had an arteriovenous malformation in my right occiput some years ago and had to wait 7 months for an operation, so I know what all the waiting worries are about. You’re definitely among friends!
Hi Richard, lovely to hear from/speak to you. I was literally just reading your post on an old thread that has come up again about going to work.
I’ve no doubt I will soon, but I havent asked anything yet as I’m struggling to cope with the news after the initial report. I’ve got so many questions and all I’m googling way too much without even knowing exactly what I’ve got. My emotions are all over the place but its mainly fear as I am a single mum living alone with my 9 year old. I’m worried about what will happen to him if something happens to me as its only ever been me and him.
Thank you so much for your response, Richard!!
That must be really hard to think about. I don’t have children so I can’t even imagine it.
This is exactly how I was when I got my formal diagnosis. We have a separate community for AVMs and I found that half the time I was encouraged by the stories I read from people and half the time I was horrified at the challenges that some people were facing. I think we all take our health for granted up until about this point!!
What you’re going through is normal.
Try to balance getting encouragement from people and not reading so much as to frighten yourself. The idea of our communities is to help you, to support you, to do the positive things. I’m not so familiar with aneurysms yet, so I need to not suggest things here that are perhaps not as valid as for our AVM community but in AVMs, I’d say “just because you’ve found it doesn’t mean to say it’s going to go pop”. My experience of neurosurgery is that neurosurgeons in the UK sometimes seem very relaxed about your risks: I sat on the elective surgery list for months and months, with my veins getting more and more affected by a rogue arterial blood flow. And that really worries us because we are brand new to this.
The main point of these communities is
You. Are. Not. Alone.
You’ve got that right about surgeons. He told me to go home and carry on as normal for now. I was stunned.
It sounds impossible to do but honestly, somehow you’ve got to get yourself through the waiting period.
Like you’ve read elsewhere, I helped myself by telling my work colleagues and the people around me that I had an increased stroke risk and by getting a medical wristband. These stopped me worrying so much. And I put my wife’s phone number on my phone as the “In Case of Emergency” number.
I also set myself a project to do – something that would keep my mind busy – to stop me just thinking the worst in all of my free time.
Somehow you’re much better to accept this as a risk (not a certainty) and to distract yourself rather than zeroing in on this being the only thing in your mind.
What sort of questions or worries have you got?
At the moment, so many, but all I’ve got is an initial basic report from one MRI. My worry is something happening as I’m on my own with my son. I’m worried something will happen when he’s asleep and I can’t do anything, I’m worried about him finding me and being alone, am worried about what will happen to him. Its all snowballing at the moment. Am obviously hoping once I know for sure what I’m dealing with I can cope better.
I’d hope others might be able to share their understanding of the report. To my eye, the atherosclerosis is the more interesting thing. It might be the aneurysm is being driven by that but I’m guessing.
My AVM was an artery connected into my right transverse sinus. In a similar way to you, there was an apparent diminution or narrowing of the vein in this case, which disruption of flow might have led to something. I could hear the disrupted flow as pulsatile tinnitus, so I’d say that you can probably hear the disrupted flow. But I’m just a patient like you, not a doctor, so I might be talking tosh.
For me, that I could hear my AVM meant that I went to the doctor to ask about it, so it was a good thing.
I don’t know what to suggest at the moment about how to look after your son. I expect a good number of other aneurysm patients will have the same concerns and may have worked through some ideas. How old is he?
“Tosh”…that did make me laugh .
Thats what the private neuro I saw on Friday said., he’s more concerned about that. He had access to my scan as he also works at the hospital I had them taken. I looked at them too, obviously I’m no expert but you could see there was a difference between my left and right. I’m stumped because the PT has gone away. Hes referred me for further tests via the NHS but he won’t be my consultant there.
My son is 9.
How was your AVM disgnosed? I read you had surgery. Is all ok now?
My AVM was diagnosed principally because I had pulsatile tinnitus and could hear it. I’m not very good at going to the doctor, so I was busy googling until I found something worth going to the doctor for. I found AVMs and pulsatile tinnitus and something called a DAVF and had a slight OMG moment, so then I went to the doc.
I was referred initially to ENT but my consultant recognised what I was talking about instantly and went to find a stethoscope. He plotted all over my head with the stethoscope to see if he could hear the bruit, the pulsatile tinnitus from the outside. He could. So then he confirmed “AVM” and the bottom dropped out of my world in much the same way as yours. That was the end of August 2016.
It took a month to get an “urgent” MRI!! A further month to get it back to the ENT guy and it was November before I was seen in QMC Nottingham neurosurgery department. The assessment was a shunt from an artery into my right transverse sinus and the disruptive flow going in all sorts of directions including along both transverse sinuses and then past my ears. I was given an estimated date of March/April and was eventually seen at the beginning of April 2017. I had a glue embolisation procedure to block up the naughty join between artery and vein (which was then labelled a DAVF).
I didn’t have a bleed and yet it took a long time to get used to the different pressures in the arteries and the veins such that I’d say it took me at least 18 months and much anguish to feel well again.
However, it is now 5 years later and I’m absolutely fine. I have times when my head feels odd (I think any neurosurgery leaves you feeling at least a bit less than 100%) but recently I’ve been telling everyone I feel
I’ll likely have some more occasional odd days but if that’s my adventure, I’m happy.
To be honest, if someone told me I needed a further embolisation, I’d be happy with that, too. When we are first presented with the idea of brain surgery we all get the googlies and it does have risks associated but honestly, I got through the actual operation far better than I anticipated and it is something I feel more able to do today than when I was at your stage.
One of the things I encourage myself with and others on avmsurvivors.org is that we are very lucky to live at a time when these things can be treated and that outcomes are much better than they have ever been.
To discover your issues before they’ve led onto a stroke is just brilliant. Honestly, it is. It still scares the pants off you but it is really a fortunate position to be in and I think that’s why the neuros are rather laid back about it.
I hope this helps.
You’re not alone.
Nine is kind of a difficult age but not so vulnerable as someone much younger. When you need to go to hospital etc how do you get cover for him?
Catch you tomorrow.