Brain Aneurysm Support Community

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

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 :)

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Hi MikeMG,

I had a very similar experience with the nonchalant presentation of a “small aneurysm” by medical personnel. Sometimes they don’t seem to understand the reaction people have to that word – and rightly so given that most of what we hear about aneurysms is sudden ruptures with devastating results. But take a deep breath because it may take some time to determine your exact situation and no one will hurry unless you are rupturing or having severe symptoms.

I have a 6mm AcomA aneurysm and my internist acted like it was no big deal. I was referred to a relatively inexperienced neurologist with an appointment three months out; and I decided to call a larger center to see a neurosurgeon directly and I am glad I did. I went to Mayo Clinic in January and they did an angiogram and recommended treatment – either clipping or stent-assisted coiling. I deferred treatment until summer because I am a teacher and cannot afford to take off from work, but I go back up on May 30th for another scan and to schedule the treatment.

Like you, I find Google to be more confusing than helpful because there is a lot of conflicting information. However, I strongly recommend that you get an opinion from a neurosurgeon at a high-volume center. Mine is a complex aneurysm and I have hypertension and despite its small size they are recommending treatment. Some consider <5 small and others <7 and either way I am pushing it.

In the meantime, try not to worry. I know that is hard, but all you can do is try to see the best medical personnel and put your trust in them.

Best of luck to you and keep us posted. :slight_smile:

Jennifer

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Hey Mike,
Being ‘in a bit of shock’ is normal. The dr’s deal with this sort of thing everyday, but for us, the patient, it ain’t quite that ‘normal’. The dr’s need to have that disconnection or they would become burnt out real quick BUT again for us, we don’t have that disconnection, we can’t be so nonchalant, for us it’s real, VERY REAL and shocking. We know this because we have been there too.

“They did a T3 MRI (?!)…” OK, so here’s a bit of an explanation for you. The strength of the magnets used in MRI’s are measured in a unit called a Tesla (T). A T3 is twice as strong as T1.5 (Normal MRI) and the stronger the ‘T’ the clearer the images. Along with the strength of the ‘T’ the images can also be enhanced with a dye which is injected intravenously. So that’s basically what they mean by ‘T3’. ‘T3’ is the clearest image an MRI can give.

‘Waiting for the report’ In really, really basic terms radiologists are photographers, they take the pictures, then they interpret what the pictures show and write a report on what they see. Then you see a specialist, in this case, a neurologist, who has a bit more knowledge in regard to brain structures and the location of anything of concern.

‘…but he found a small Aneurysm…’ When it comes to the brain, anything abnormal is of concern to the patient. We often don’t hear the word ‘small’, we hear ‘aneurysm’ and go PANIC, that’s pretty damn normal I can assure you. And without any great advice given by the medicos, for 90% of us we consult ‘Dr Google’. Dr Google may be OK for general information BUT for a diagnosis, it’s too general and that can sometimes send us into a major panic. This is why you need to consult a neurologist, who can assess your specific situation, rather than a generic/general opinion via Dr Google.

‘But really, I’m just not sure if I can see it!’ and this is also very common. There are a few differing types of aneurysms, some can be obvious to the untrained eye, like a balloon on the side of a vessel. Where some may be like the thickening of the vessel walls and often for the untrained eye can be damn near impossible to spot. The location of an ‘abnormality’ is also very important. For some, ‘annies’ can develop where the vessels split and branch off, for others it can be where the wall of the vessel is thinner. Some can be on major vessels, where some can be on more minor vessels, all of these factors (size, location and type) can have an impact in regard to a course of action.

Also for some people they changes in the vessel may have taken years to change and the annie can be considered stable enough not to operate on or disturb. This is often why a ‘wait and watch’ approach is adopted. If there is no change with the annie over the waiting period it may be considered stable enough to leave it alone, where if there is a rapid change it maybe decided to investigate further.

Jenniferlgro (above) speaks of an angiogram. This is where the medicos insert a small camera into the vessel to have a view of the annie itself, viewing it from inside assist them to assess it’s type, it’s size and the risk of a rupture. I can guarantee you if the annie is small the very last thing you want is a unnecessary neurosurgical procedure. Sure, neurosurgery may ‘fix’ the annie, but it can unleash a whole range of side effects that can be lifelong and life altering.

And finally, ‘Sorry for all the questions’. Do Not and I mean DO NOT be apologising. This sort of thing is stressful for anyone and we ALL understand and comprehend this because we too have been there. If ANYONE tells you to simply get over it, they have never been in this situation and they simply wouldn’t have a clue. You have questions and that’s normal, we all did, we all do. Trying to deal with it all on your own is damn near impossible and who better to ask than people who have been there. So come talk to us. We know from personal experience, not a university textbook.

Merl from the Moderator Support Team

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Hopefully you will get more information … about location and size … I am on the watch , aspirin daily , migraines treatment, first they did once a year CT now they moved to once in2 years MRI since it looked stable to the doctors .

One thing is important , that you know about the aneurysm , and it’s much more safe then not knowing about it …
I am not a doctor , and have been writing this before , for memory issues try to check b12 level in blood test . If deficiency it creates various problems like this…

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Hey MikeMG! You’re correct, information is conflicting. There’s one site that has very good information which has something like “it is when it isn’t” And then treatment can be a whole different can of worms. It all depends on the doctor and their experience. The one thing that’s certain, is not many folks rupture, this is a very good thing for you!

My Neurosurgeon said one time that most folks don’t even know they have an aneurysm if it doesn’t rupture. From what I understand, aneurysms don’t cause symptoms unless they become large enough to press on something.

When you’re researching, stay within the last five years or so. Medical knowledge is an ever changing beast. Go back to far and the information isn’t valid anymore. Also, try to stay with the UK studies as they will tell you more about the practices going on in England.

Put things in perspective. I’m not really sure of England’s stats, but having once enjoyed riding motorcycles, I’d venture to guess the odds of being in an accident while riding are much higher than a rupture. So enjoy the holiday, raise a glass and say cheers! Come the next week, you can call and ask for more specifics.

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jenniferlgro - Thank you for all the info. I’ll certainly look to go to the best place I can for a 2nd opinion. To be honest I don’t know how it works here in the UK. I went private for the scan, but am not sure if they can refer me to an NHS Neurologist, or even if I want that - I’m certainly not rich, but if a private Neurologist would be better & give better advice, I’d pay for that route.

I guess I need to call the place that did the scans back on Tuesday to chase the report and also further info, then go from there.

Thanks again for the reply, really, really appreciated :slight_smile:

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ModSupport Merl, thank you for all the reassurance and also all the info. You’ve given me insight into so much and also helped me form some questions to ask when I speak to someone.

I’ll likely take all the info to my GP and try to get a referral from them, but I need to look into if you can choose your Neurologist on the NHS or, if not, how to choose one going private.

Really, really appreciate all the info you gave, seriously, it’s a huge help!

I realise now that it WASN’T a Neurologist I was called in to see, it was the Radiographer. So, I’ve not seen a Neuro, nor has a Neuro seen my scans yet, so I guess the next step as you say, is to see a good Neurologist.

Thanks again - I’ll update when I know more.

:slight_smile:

Mike.

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Just realised I can do multiple replies in one post - sorry, should have done that with the other two! So…

gk79 - Thanks for the advice & info. I had lots of bloods done recently-ish (few months ago) Only thing that was on the low side was Vit D (I like in Wales, UK - not much sunshine AND I work indoors even when it is sunny!). I’m starting taking vit D tablets with K2 though (and will try to get more sun!).

Thanks GK, appreciate the reply :slight_smile:

Hey Moltroub - Thanks for your reply, too! Good point re: Recent research. It’s odd sometimes, too! I saw a fair few posts dating back to like, 2011 / 2013 about ‘Onyx glue’, but then it seems to have gone quiet about that treatment! Odd.

Also UK related, yup - then there’s the UK NHS vs UK Private, I’m hoping there’s good Neurologists on the NHS and that you can choose your own (I don’t have a clue, so that’s more to find out!).

Re: Riding bikes - good point. Always good to keep perspective. I think I’ll feel better when I know more about what they found, too - Hard to deal with something if you don’t yet know what it is you have to deal with (size/location etc - They gave me the scan on a USB stick, but I just can’t see anything!).

Thanks again Moltroub - and everyone else that’s replied, seriously appreciate the responses :slight_smile: Wishing all the best.

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I would recommend searching for a Brain Aneurysm Support Group In your area. The website to do this is bafound.org. You first press “Accept” under “This site uses cookies”. Scroll a little ways down the page to where it says “How to Help”. Choose “Find a Support Group”. You can then enter your location.

I think this would be a good place for you to start. I can totally understand your fear. I didn’t get any warning before mine ruptured at 48 years old. You have the advantage of being aware of it before it can cause damage.

I pray that God will be with you in this extremely difficult time.

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Hey Mike,
Being that I’m in Australia, I’m not sure exactly how the NHS systems work BUT, Here many of the specialists who work in private practice also work in the public system. Seeing private you may be able to see them sooner for a fee but they are still the same people, with the same knowledge.

I have seen numerous neuros over the years, both public and private, and I couldn’t say which was better. Each had their own opinion and to define ‘a good neurologist’ would be very difficult from my experience. One who listens to your concerns and does not discredit those concerns could be a starting point.

I had some weird sensations post surgery and had a private neuro tell me “Well, that can’t be happening…” Like I was imagining things. His online reviews were glowing, my post consult review was less than glowing. My next appointment via the public system was much more thorough and they agreed there was an issue that needed surgical follow up.

So private maybe quicker, but private does not always mean better.

Merl from the Moderator Support Team

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Hi Mike I had an incidental find of my aneueysm in Dec 17. It was 6mm and was a basilar tip aneurysm (so where the main artery enters the back of the brain and divides). I was referred to the QE in Birmingham and was seen in March 18. I had no symptoms at all. At first the consultant said it would be a watch and wait but wanted an angiogram done. That was done the end of June. Had a follow up consultation 3 weeks later where he said it had been discussed in the MDT meeting and because it was so close to my optic nerve they recommended treatment. He got hold of a previous MRI that was done 4 years prior to this and it was present there but no picked up. It was still the same size. I had my operation in Oct. They went in via the artery in my groin and inserted a mesh cup device. Stayed in one night. I had a repeat angiogram last Friday which is done routinely. Initial reports said it all looks good but still needs to be discussed in the meeting and looked at in high resolution.
Since my initial op I have experienced sporadic visual problems and tiredness like Ive never had before. My memory is also very fuzzy at times. I have been signed off work but am due to return in June.
My advice would be to ask for an angiogram to get a better picture of the dynamics.
Google can give you some ideas but personally I would take more note of the people on here who have actually gone through it. Good luck my friend.

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Hi Mike,
I was in your position about nine years ago – I had a MRI that incidentally uncovered a tiny aneurysm at 3mm. I went to a general neurosurgeon at the time and was told to monitor it. I did this for five years with MRIs every six months. On reading an entry on this site, I decided that more information was needed. I went to John Hopkins aneurysm center and had a angiogram. The aneurysm specialists strongly suggested getting it clipped because of its location in my brain. Size was not the determinative factor in my case. To make a long story short, I got it clipped four years ago at Colombia Presbyterian Hospital in NY. I was told that the walls were thin and it was a good thing I got it clipped. I’m 100% back to normal and have a lot of piece of mind knowing that my problem is now fully solved, period. In short, I am very thankful that I went to the top aneurysm centers and doctors I could find.

My advice is that go to a doctor that specializes in vascular systems of the brain in a high volume center to get the very best advice you can. There are many people on this site that show you can make the right decision. Good luck!

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Thanks Michele1, MariaH, ModSupport, Jannymanny and - and everyone else that’s given me info & support :slight_smile:

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 :slight_smile:

Mike.

Hi Mike , you mean referral to see neurosurgeon ? Sometimes it got lost , I would advice to call your primary doctor and ask them to send a referral again .
Regarding supplements ,I have read that taking collagen supplement doesn’t help ( no effect ), if it’s true , I would just eat more natural food that has this element . I know flaxseed oil is good for vessels , and I have been taking it .

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Thanks for the info re Flaxseed oil. There is so much information available that it is difficult to locate all of it.

Hi I’m new here I’m in the same boat I found out by accident that I have one and the emergency room found it by accident but when I went to urgent care about a cough I had she told me that I had one again and it’s small just watch it I’m like ok it not a concern to anyone that I have this and no one is going to explain so I did the same thing you did a looked all over the internet and I found a little bit but now I’m more worried than ever I also have the same questions and a little more like my headaches for years my tiredness my sensitivity to sunlight etc that might come from it but no help from professional doctors I don’t understand why maybe it’s just me I just feel lost in this world with a bump in my head that can take me out smh

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Welcome!Sorry for you but you came to the right place.I believe to feel this way is normal.When it happens to you it is hard and in shock a little.I too was told in my mind by accident.It has helped me to talk to others that are going through same thing.I hope positive thoughts your way.But do understand how you feel.

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I’m in the states, but I had a similar experience last November. Went in because of headaches. GP doc referred me to get a 3T MRI/MRA. Neurologist described her finding as a 1mm outpouching favoring an aneurysm over infundibulum in my Anterior Communicating Artery. I found the report on my online portal along with an “urgent referral” to a local Interventional Radiologist before my doctor called me.

A week of Googling did a number to my stress. I was terrified.

The IR couldn’t get me in for over a month, but miraculously I called and they just had a cancellation the next day and got me in. I really liked my visit with him. He kind of put me in my place and I felt like I got my first breath in a long time because of how sure and calming he was. He said if it was an aneurysm, that it was the tiniest one he’s ever seen. But even with a really good 3T scan, he still couldn’t tell. He told me I had 2 good options… I could do an angiogram with him and get a definitive answer, or I could wait and monitor it. He also said there’s no way my headaches were caused by it. I later found out I had some other things triggering them (DHEA supplement and Sucralose).

I told him I need some time to think. From what I could tell, I had around a 1% risk of complication (minor to major) from the angiogram, but a 0.01% to 0.03% risk of rupture in the next year. So I chose to monitor. He said we’ll look at it in 6 months, maybe a year, but he also said even that might be too soon. When I called back a couple days later to tell them I wanted to wait and monitor, the nurse said she’d call back in 6 months to set it up. I was expecting to get another scan in June of this year, but I just found out this morning he wants to wait until July 2020. I’m trying to take that as a good sign. She said they would do a scan whenever I wanted if I needed peace of mind.

This morning I found out a work colleague (didn’t know him real well) died of a BA on Friday. Then within an hour, my doctor’s nurse called me to tell me the scan will be in a year.

So I’m a bit of a mess this morning if I’m being honest. I’m trying to decide if I should get a 2nd opinion or not. I have the scan files on my computer that I could send out.

Ok, I’m sorry I got off on a tangent on my story. But I wanted to tell it to you so that you can maybe get some comfort. What helped me out the most was finding out between 3% to 9% of the population has a brain aneurysm, and the vast majority never know it or have an issue with them. Knowing about 30,000 rupture a year in the US, that means the rupture rate is 0.01% to 0.03% (assuming US population is 360 million) for the 3-9% of people that have brain aneurysms. That’s only a 3 in 10,000 chance at worst case for people that have them. And the smaller it is, the less that chance will be.

He told me I’m supposed to be living my life normally. I’ll admit it’s hard to do though. It has gotten easier as time has gone by. The first month was brutal. 2-3 months later I started feeling like myself again and I could talk about it without anxiety. It got me to eat healthier, but I haven’t worked out like I used to. I’m still a little scared to lift weights and things like that. So I’ve lost some muscle mass.

I hope this helps. Just don’t go down the Dr. Google rabbit hole. It screwed me up and didn’t do me much good. Only good I got out of it was the odds I posted above.

Hope this helps.

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JFAR I think your doctor right , the aneurysm such small is monitored like once a year , it may be connected with insurance also , I think you are right to wait with not doing angiogram yet ,
The aneurysm growing ( if so ) very very slowly ( usually ) .
I think in case you get a second opinion you will hear absolutely the same scenario , to monitor . Mine is 3 mm , first they did scan once a year - it’s not changing , so they move even to once in 2 years scanning .

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Hi mike
I’m new on here today in fact
I got my news of a 6 mm aneurysm on 31st July
Omg I’m still in shock mine was accidentally found on a neck scan .
Since I’ve googled panicked hit myself in a proper bad state . I’m 53 .had to stop my work due to memory problems but apparently it’s not linked mines on the anterior communication artery
I went to Gp which I’m still waiting fir appointment , in the mean time I went to London private and saw a neurologist there .
I’m being reverted to him on the nhs , I’m not rich either since having to stop my work .
It’s such a worry , I’m not the same person I get worried at the Slightest twinge now .
Although I’m going to be monitored at the royal London hospital . For its size and texture , had s mra yesterday on the nhs they forgot to do it with the mri scan on 8th aug 19 how on earth does it get forgotten on such a serious condition .
If mine shows as a bumpy one they will surgically intervene if it’s smooth in texture they will watch and miniature it . Both scary I guess . Thus is like my life on hold
Not sure what area you are from but my private app was in London so was a bit of a trek , concerned though if any thing does happen to me my area how equipped are they for it
T