Living with a brain aneurysm

[Amaris]

Mine's just been diagnosed. I'm waiting for more expert advice. I understand they consider it low risk for rupture as it's small but it's still pretty terrifying, I wondered how other people coped or what decisions you made.

What a difficult situation for you to have to deal with. I have no advice to offer, but wanted to send hugs. x

Thanks! It's a weird one as the chances of haemorrhaging are fairly low, but obviously if I do it can be catastrophic. My DF has one and he's in his late 80s, but men haemorrhage less frequently than women apparently.

Oops name change fail there!

My dh had a brain anyurism (cavernoma) which burst. This left him with a seizure disorder which was difficult to control. Eventually he opted for surgery, which was easy virtually painless and successful.

Glad it went well for him. I think I'm f you're higher risk or if it's ruptured already then it's an easier decision to make about surgery, but the risks of surgery are higher for me than the risks of it rupturing, yet the prospect of living with it the possibility of rupture and having to give up activities I love is also hard. I haven't had very good medical support yet, it's taken a year to diagnose and my consultant seems vague and offhand.

dealing with uncertainly is difficult for medical professionals as well.
You need to speak to both a neurologist and a neurosurgeon.

Why was it diagnosed, what symptoms were bothering you? Can they be treated any other way? or is there any other option to reduce the risk of rupture?

From what I read here, literally hundreds of thousands of people walk around with these things for many years with no problems.

Some support here.

Sorry you've got this to deal with but I would urge you to try not to let it blight your everyday life. My husband has one, has to have it monitored with a yearly scan. It's not grown yet since diagnosis 3 years ago when he had a scan to investigate something else. At the time it was a real shock but since then he's carried on as normal. He had wanted to take up scuba diving again but despite reading somewhere it was quite safe to do so he is reluctant but still unfortunately smokes which I'm obviously not happy about! His neurosurgeon told him that a lot of us probably have an aneurysm and live normal lives in complete ignorance with no symptoms whatsoever but it's just people who've had a brain scan will know for definite.

Thanks brainless. It was diagnosed because of numbness in my face and weird tension around my eye. I was told it was sinuses to begin with, then nerve pain, and then it took four months from my MRI to tell me that I have an aneurysm. I'm trying to get a referral to a neurosurgeon, that's what I was told initially was going to happen but I just got another appointment with the neurologist. The neurologist wants to ask the radiographer for his opinion on monitoring it.

Yeah there are loads of people with them - I'm not sure whether I'm lucky or unlucky mine was found! It's early days so living with it might settle down in time, but having to curtail activities that are higher risk is pretty grim. I've not really been given any proper advice by anyone yet.

What activities have you been told to curtail?

I think I'm still in the shock stage nong, it's good to know you get over it, glad your DH's hasn't grown as that does seem to be one of the risk factors. I think basically because the neurologist said to me I had an aneurysm, he'll write to me about what to do once he's had further advice I haven't had a chance to ask all my questions to understand what type it is and so what my personal risk is.

lljkk well part of the problem is I haven't been told anything, and there is limited evidence about lots of stuff. But my reading and watching YouTube seminars by doctors suggests no heavy lifting (I was dragging furniture around last week!), so be careful at gym too, yoga inversions (including downward dog, which seems a staple of many classes) and playing my wind instrument (studies about trumpet players and strokes). It may be that I don't need to give them up permanently, but it seems sensible to be cautious until I get to speak to someone who can give me proper advice.

I think you need to know how small/stable it is first but surely it's a positive that the doctors weren't in a hurry to tell you? - from our experience if it was risky they would have got you back in straight away to arrange treatment. My husbands neurologist referred him to a neurosurgeon for further advice but was able to tell him first while we waited (a long time on the NHS) for the appointment that it was small and unlikely to be unstable. The neurosurgeon when we did get to see him made us feel a bit like we were wasting his time, he seemed to be if the opinion it was inconsequential compared to some of the things he dealt with! I hope you come away similarly reassured.

Thanks nong for the reassurance. I think because the neurologist didn't say anything like that at all and had previously told me I had trigeminal neuralgia (even though I have no pain and at this point he already had an MRI with the aneurysm on it) and just saying he was writing to someone else for advice, all I know is from what I've read and watched, which is mostly reassuring, but some studies say the location of mine is a risk and also that the lifetime risk of it rupturing is around 30%, which seems quite high to me (higher because I'm a woman in part, men with smaller aneurysms seem to have a very low risk). Also because I have muscle tension issues around my eye there is the possibility it could affect my sight, but the neurologist still thought my facial numbness was trigeminal neuralgia even though eye problems are well known with aneurysms in the position that I have it. I'm going to try to get a referral to someone else, but I might as well wait to see what the neurologist comes back with first.

I think the risk factor is a function of size and location. Obviously aneurysms on the surface are more easy to deal with if either they become high risk or indeed if they rupture. Rupture does not mean instant death. They can rupture/bleed out then coagulate and be managed/dealt with after the event albeit there can be some neurological consequences.

Aneurysms in difficult areas eg basal/circle of Willis can be dealt with using Endovascular surgical techniques eg by entering via the femoral artery in the leg and threading a "tool kit" up to the affected area and applying GDC coils /sleeves etc

Sometimes diagnostic imagery can throw up stuff we dont really want to hear about and which may never cause any issues but once discovered,cause anxiety.

Thanks Raspberry. I know the location from the consultant's secretary but not the shape so no idea what sort of intervention they might do, though I think most are treated endovascularly now. No one's discussed my personal risk with me either (blood pressure, family history), and I have a symptom with a problem around my eye that the consultant is also not acknowledging. I'm a bit calmer about it now but still lots of unknowns!

If you’re on FB there’s a great online community for people who have aneurisms/venous abnormalities of the Brain.

My daughter has an inoperable AVM which ruptured leaving her with deficits, as a parent I get lots of support from these pages from people who understand what it’s like to live and cope with these conditions.

Sorry about your DD Henni, I've found the FB groups where there's a lot of info and I don't feel so alone with it.