Just been told I have a 'small brain Aneurysm'... ... - Headway

Headway
6,844 members9,300 posts

Just been told I have a 'small brain Aneurysm'... but that's all I know?!

MikeMe
MikeMe
20 Replies

So today I travelled to London for an MRI (have been having short term memory issues and swapping words for ones with similar meanings).

They did a T3 MRI (?!) and initially, the main doc I was seeing (who did a physical before the MRI), told me, after the MRI, that everything looked fine, but we had to wait for the radiologist's report in full.

A little later, I was called in to the Neurologist (different person), who said my brain itself looks fine, no sign of MS etc etc, but he found a small Aneurysm! He sort of showed it me on the screen, but at that point I think I was in a bit of shock.

He said it's so small it'll probably be monitored, the docs there would discuss and 'may' refer me on to a Neurologist near me (I travelled quite a few miles to get to London).

After leaving, the shock has passed (A BIT!) but now I have lots of questions, like HOW small? Where specifically is it, and... WTF?!

I've obviously been consulting Google, but am now more confused! Some say small Aneurysm should be monitored, and <7mm is less risky, other sources say the size isn't the main thing, it's the thickness of the walls of the Aneurysm, which they can't tell unless they go in.

Has anyone here been diagnosed with a 'small' Aneurysm? If so, anyone on 'Wait, monitor'? If so, how long have you been doing this (can that be done forever, or does everyone need treatment at some point?).

Oh, and I do have a USB stick with my MRI scans, and have been trying to spot my Aneurysm... But really, I'm just not sure if I can see it!

Sorry for all the questions, just in a bit of a spin and as it's the bank holiday... stuck!

Thanks in advance :)

20 Replies
oldestnewest
Danger19

Hello my lovely,

I’m so sorry for your worrying news. If you have thought of further questions or do not feel you fully understand the extent of what you have been told there are ways to get an answer to the not knowing. If I were in your position I would contact the secretary of the Neurologist, explain to them that you do not fully understand the extent of your condition and that now you have thought about it you have a lot of questions. Most of the medical professionals I work with would either arrange a telephone consultation with you, Put answers in writing to your questions or make you an appointment that is not to long away. You must speak to the consultants personal secretary not just some administration person that works for that department. Any decent Doctor, no matter what their seniority, wants an individual to be unsure, worried or feeling alone and in the dark. If you have no joy, I would explain the situation to your GP and they should refer you to another Consultant in the same area that could explain everything you want to know about your diagnosis. That is how it works in all the hospitals I have worked in. It all depends on whether the Neurologist you saw has any understanding of how it feels to be in your condition and if he is really of a caring nature.

I wish you peace, happiness, good health and a lot of luck my friend.

Vikki

2 likes
Reply
MikeMe
MikeMe
in reply to Danger19

Thanks Vikki,

I've never been to the place before, and although most of the experience there was exceptional, after being told about the aneurysm, I was probably out of the door, as it were, within 5mins. Questions only really came to mind after, and then it was too late to ask them :(

They said they may or may not refer to to a Neurologist, but I'll take your advice and call them. It's a bank holiday weekend though, so prob can't speak to them until Tuesday.

I tried to see if others online had been diagnosed with small brain aneurysms and been told to wait & monitor, so I could see if this can remain stable for years or something, but most of the posts/sites/reports I find are people who have had surgery or intervention of some kind, so am a bit lost.

Ahhhh well... must try to bing watch Netflix & stop worrying!

Thanks Vikkie,

Mike

Reply
Danger19
Danger19
in reply to MikeMe

You are more than welcome my friend. People are probably sick of reading this but sometimes it helps to put peoples minds at rest to know. I have been a specialist nurse for 25 years so there’s no a lot medically that I don’t know or can’t find out. My Neurologist friend has told me that small aneurysms are unlikely to rupture or bleed. It’s not definite but is unlikely. I do think that a proper face to face conversation and to see the actual MRI images will help to put your mind at rest. Don’t accept any excuses from the secretary or even the consultant as to why they can’t help or don’t feel there is any reason for your concerns. You have every right to ask for more information and to be treated supportively. At the end of the day they may be very knowledgable, excellent Doctors but they are not God. Don’t let them fob you off, your not asking them to move the world for you.

Stay positive my friend and good luck,

Vikki

1 like
Reply
MikeMe
MikeMe
in reply to Danger19

Thanks Vikki! I wish all nurses were as compassionate and thoughtful as you :)

It's a relief to hear what your Neurologist friend told you, as I was unsure on if people can have them for years without them getting worse, or not. So sounds like it is possible, at least.

To be fair to them they did show me it on the computer briefly, but then a few mins later I was out, without chance to ask Qs. Just "Sod's law" that it's on a bank holiday weekend so I can't ask them the next day!

Still, have calmed a bit now. Thanks for reading my 'wobble-rant' and for the info you gave - it helps :)

Mike.

Reply
Danger19
Danger19
in reply to MikeMe

I am more than happy to help where I can. People that have been through the things we have experienced deserve some support and understanding. It is so difficult to take in what you are being told when you have just been informed there is something physically wrong. If you have any more questions please just ask my friend. Anything I don’t know I’ll be able to find out for you so please try not to worry.

I wish you peace, happiness, good health and a whole lot of luck,

Vikki

1 like
Reply
Kirk5w7

Hi Mike

My sister had a large inoperable aneurysm and was put on annual checks, this happened for in excess of 5 years, nearer 7 i think, at which point she contracted leukaemia and could not receive treatment until her aneurysm was fixed. A further 12 -18 months passed at which point they had another method of dealing with the large aneurysm which by this time had grown to 11mm.

It was duly operated on, she has had her chemotherapy and is now considering having a hip replacement. She is now 73 yrs of age and looking forward to many more years with hopefully better health.

Apart from the stress this is causing you many people live long and uneventful lives not knowing they have an aneurysm, cosequently dying of other causes. I hope they will be able to settle your mind so that you can continue living your life fully.

Janet x

Reply
MikeMe
MikeMe
in reply to Kirk5w7

Janet,

Thank you so much for your reply :) Your reply, and Vikki's too, have helped put my initial panic at ease :)

I really appreciate you sharing your sister's story, and the reassuring words.

So glad your sister is still going strong - I hope she has many, many more years of good health (and fun!) :)

Mike.

Reply
maureen103

Hi Mike,

I had an aneurysm that ruptured back in 2016 but at the same time they found another that they couldn't treat at the time. Mine was monitored for a couple of MRIs but then the consultants decided that it was putting me through unnecessary procedures and so I have had no monitoring for 18 months or so. There is a greater risk of a rupture if one has previously ruptured but it is obviously considered quite low. I do not worry about mine in the least and do not let it interfere with my life at all. The only concession I make to it is to declare it on travel insurance. Just in case I need it but happily so far it has been wasted money. I even make long term plans and plan holidays etc for next year and the year after. My advice would be to note it but just get on with enjoying life but obviously don't take additional risks. Give up smoking if you smoke and can do so, don't take drugs and keep BP on the lower side of normal. My only regret is being told not to scuba dive any more but I am 71 now so probably most instructors will be relieved to know that I will be darkening their door! My best wishes to you

Maureen x

1 like
Reply
MikeMe
MikeMe
in reply to maureen103

Thanks Maureen! Glad to hear you're okay and that you're getting on with life :) With travel insurance, do they still cover you for issues like the aneurysm, or does it exempt that? (Just wondering as I hadn't thought of that at first!). Also, are there any issues with flying etc have you been told? Sorry for all the questions! :)

I'm a non-smoker, and the only drug of choice for me is caffeine, though I think that can cause blood pressure spikes, so will stop on me 3-a-day (strong, fresh) coffee habit! (will probably be good for me in general anyway!). My blood pressure has been high in the past, and is now at the top end of normal. I'll work at getting that down (stopping the coffee should help!).

Sorry to hear you can't scuba! How about snorkling? Is that allowed? Not quite the same, but depending where you are, prob still some amazing sights!

Thanks again Maureen, really, really appreciate the reply!

MIke

Reply
maureen103
maureen103
in reply to MikeMe

You can still get travel insurance quite easily with an aneurysm. I use AllClear. I declare my ruptured aneurysm, my unruptured one and depression as I was treated for it a year ago and my husband had PMR. For the two of us for a trip to France we are paying about £60 so not bad at all and of course we are old too. I will be 72 when we travel and husband is 75. It is all done over the internet so dead easy. I have been told flying is ok and in fact everything apart from scuba diving and thankfully bungee jumping! I would think snorkeling is ok as it doesn't put pressure on the brain blood vessel at all. I do yoga too but don't spend anytime in inversion poses. But I was not ever very good at those so wonderful excuse. I take medication for my blood pressure but to be honest it never was high. At the moment it is running at 112/62 which seems a bit on the low side to me but I try and avoid seeing doctors so will probably just continue. I do hope that you are able to allay your worries and enjoy life. It is too short to waste any of it worrying if it can be avoided. I am aware that my age makes it easier for me not to worry. I have had a good life and if something happens now it doesn't seem so bad as if I had been younger with my life still mostly in front of me. Take care Maureen x

Reply
54Apple54

Hi ,I totally understand your stress and anxiety,when I was told I had a large aneurysm and then left me wait to see an consultant for months ,I was so stressed I felt I was giving myself more aneurysms 🙂but when I did see a consultant they returned me that it was probably been there years and at 15mm it probably wouldn’t grow or burst as it was safely tucked into a sack with thick walls protecting it but I would have signs of a burst via headaches bulging eyes ,,,, so ,,,, I panic when I have headaches but they are rare and go in a matter of hours

When you see a consultant in your area ,you’ll get a better idea ,your gp will give you info on size via the info they would be sent .

Good luck and try to relax as much as possible but I totally understand your mind is still in shock at your news

We all wish you well and wait to hear your progress 🙂

1 like
Reply
MikeMe
MikeMe
in reply to 54Apple54

Thanks 54Apple54! Glad you're okay. Interesting re: thick wall protecting it! Cheers for all the info, I really hope I don't have to wait months. Hopefully I'll at least get some info soon (I don't even know the size or location - and try as I might, I can't see anything on the 3d scans they gave me on a USB stick!).

Does anyone know if you can choose the Neurologist you go on, if you're on the NHS?

Thanks again, really appreciate the replies :)

Mike.

Reply
54Apple54

I’ve only seen my scan on the consultant screen, it only made sense he second time I saw it when he spoke to me very slowly pointing out the position of my Fusiform aneurysm , I’m in London and I never asked to see a named consultant as I never met the same person twice but I’m sure there no harm in asking.

1 like
Reply
MikeMe
MikeMe
in reply to 54Apple54

Thanks for the reply :) Hopefully all will become clear when I see someone, think I'll feel a bit better then in some ways, as at least I'll know what I'm dealing with and will have some questions answered etc!

Thanks again :)

Reply
54Apple54
54Apple54
in reply to MikeMe

Please try and bring someone with you or use a voice recording as you can come away confused and frustrated about the questions you never remembered to ask , I thought I was ok , and came away agreeing to an exploratory op that would be more dangerous then leaving my aneurysm alone. I later got my gp to cancel it .

So go prepared as all on this site will tell you .

Reply
GrannyTWest

Hi Mike, I see you've got lots if replies so hopefully you are feeling less anxious now. Anyway here is what I can add, I had a SAH - a subarachnoid haemorrhage in Oct 2017 and had the ruptured aneurysm coiled as an emergency procedure. Whilst doing this the medics found another aneurysm which hasn't ruptured. I have fully recovered both from the haemorrhage and the treatment and remain on 'watch and wait' for the 2nd aneurysm (which is classified as small). I had a MRI at 6 mths and will have a further one in Oct which will be 2 yrs after the event. Apparently it is not possible to tell how long aneurysms have been sitting there (could be years) and they don't really know why some rupture and others don't. I do hope this helps. Kindest regards and good luck.

1 like
Reply
MikeMe
MikeMe
in reply to GrannyTWest

Thanks for your reply, really appreciated. I'm glad you're fully recovered and I hope you continue to be healthy :)

Reply
lcd8

Hi there. Not sure if it'll be of any help, but I have a 'large' Arteriovenous Malformation (AVM) which shares some similarities with aneurysm. Mine is in a tricky place to get to without risk of further deficit. I have always been advised to leave it alone and just be monitored - which happens every 2/3 years. So far it has remained stable. I am 46 and it was present at birth.

Reply
MikeMe
MikeMe
in reply to lcd8

Thanks lcd8 :) It does help to hear other's stories, so thank you - and glad you're okay :)

Reply
MikeMe

Thanks everyone that’s given me info & support :)

Glad you’re okay now. I’m STILL waiting for a referral to a hospital from my GP :frowning: They have sent the referral off but no letter yet with my referral info.

I’m not sure who what is a good centre in the UK for aneurysms (in fact, I’m about to post a question on this!).

I have got some info from the original scan now though.

It’s a 4mm Left Ophthalmic Aneurysm. It looks like it’s on the Ophthalmic artery, just after where it branches off from the ICA. Not sure if that’s good, or bad (if that makes sense?).

Hoping to get a referral soon so I can get more info.

I’ve also recently (last few days) been getting twinges - sort of pain but not bad, just, well, twinges that come & go, in my left eye… Which is concerning me! Though, it seems a coincidence as there’s a good chance I’ve had the aneurysm for a while I guess, so maybe I’m just imagining it, now I know where it is?! But I am definitely getting the odd twinge in the left eye, including sometimes when I’ve briefly forgotten all about it. No visual issues though.

I’ve also started taking some supplements. Not sure if these’ll help - Anyone else tries supplements to help with their vascular health? (copper, collagen, vitamin C to try to fight against any MMPs/inflammation, as I understand inflammation can be a bad thing with Aneurysms).

Thanks everyone :)

Reply

You may also like...