Very shocked and scared

[sharon62]

Hi just got out of hospital after collapsing and was sent for MRI. I have been told I have a right middle cerabral artery trifurcation 3 mm sized aneurysm and that I am now being referred to neourolgy, Im scared to death. That apparently was not the reason I collasped it was because i also have an acute sinusitis. it was found by chance.

[Gaia_rising]

Hello sharon62 ,

Welcome to the forum, and sorry you've had such a horrible shock. Without pulling paperwork out of cupboards (at twenty past five in the morning, I don't sleep properly), I can't tell you how big my cerebellar artery aneurysm was, but it didn't have 'trifurcation', which I'll look up later.

The absolute last thing I would have wanted, when my aneurysms were detected would have been for some random stranger to say "Maybe it was a blessing in disguise?"- that's not what I'm going to say, but please do be prepared, someone might say that, it's not insensitivity, it's that the aneurysm has been detected while it's still relatively small. The neurology appointment will be to assess whether the aneurysm is viable for surgery, or whether it can be kept under conservative management, 'watch and wait'. I currently have an 'early' choroidal artery aneurysm just sitting in my head, doing nothing. It was detected during the scanning series after the aneurysm on my anterior communicating artery ruptured, in February 2015.

My subarachnoid haemorrhage was drained, and the ruptured aneurysm was coiled, I was out of hospital after two weeks. While they were rooting about in there, they noted the other two aneurysms, the cerebellar one was deemed viable for surgery, and coiled in March this year, the choroidal one is too small to coil, so I'm on regular MRI/MRA scans, to monitor, but pretty much getting on with life.

It is scary, I remember the initial shock at being told I had two more aneurysms lurking in my head, and the immediate panic about EVERY ache, pain, and twinge. Your neuro-appointment will explain what your aneurysm is sitting on/in, what the likely impacts of the size and location are, and any treatment options available. Practical advice in the meantime, try not to over-analyse, there are probably millions of people wandering about with brain aneurysms, we get by. The 'Headway' forum on this site has been a lifeline for me, when I have neuro-weird symptoms, or questions I think other people might see as stupid. Take it easy, you've had one hell of a shock. (Don't do what I did, and insist on 'business as usual' straight away, you probably need time to process the news...) Eat sensibly (Yes, I know what next week is...) make sure you drink enough fluids, dehydration can cause headaches, which might increase your anxiety. I'm not going to say "Don't worry.", but please don't spend the period between now and your neuro appointment wearing a crash-helmet, and refusing to leave the house, in case the sky caves in- none of us really get to know how long our aneurysms had been in there before they were detected, you'll be no different today from how you were two days ago, it's just that now you 'know'.

All the best to you and yours.

[sharon62 in reply to Gaia_rising]

Thank you very much for your reply and sensible advice it helps to know people are living normal lives at moment still very dizzy and sick from acute sinuitus hopefully as that improves i will be able to think a little more cleary and of course wait for my appointment. Thank you

[Immunedout in reply to Gaia_rising]

I had a subarachnoid haemorrhage 2 years ago. I wouldn't wish one on anybody. I spent two weeks in a coma and a further 3 weeks on the neuro ward. Thankfully I do not remember anything about the haemorrhage but I have dreadful flashbacks to the dreams I had whilst in a coma. I can't and won't say 'lucky you' to anybody who has had an aneurysm detected. It must be so frightening to know it's there. Hopefully intervention will take place soon.

I saw the surgeon 4 weeks ago, there is a small residual 'tail' of the offending artery. I have 7 coils around the aneurysm which means the next plan of action would be a stent. To access it they would have to crack my skull, so I would have a flip top lol. Sorry if my humour offends anybody, it is just my way of dealing with it.

Love and best wishes to all x

[sharon62 in reply to Immunedout]

Thank you for your reply it really does help knowing other people have the same some intact and others that have survived a bleed. I really didn`t know what to think when they first told me and I am very surprised how many people actually have them. Glad I found this group though as it certainly has answered a lot of my worries whilst waiting for my appointment.

[Braingirl in reply to sharon62]

The problem is the location

They over manipulated the guidewire fir the stent and it deployed early exploding the stent in my brain and then lied about it, I'm left with multiple cognitive damages vomiting headaches that will want to make you die

Seizures

If the Dr would have been honest about it

It might have been repairable

But it can't be touched

No MRI/NRA to follow up on the second aneurysm because of non surgical wire left behind

[sharon62 in reply to Braingirl]

Hi

Thank you for your reply, was sorry to hear things didn`t go well during op. Did you have the aneurysm in the same place as mine and if so do you mind me asking what size yours was.

Thanks Sharon

[Lyndaryan1 in reply to Immunedout]

Hi,

I've just read your post with a lot of interest. I had a SAH but it was some 12 years ago so I have a really good insight into what you mention in your post. You mention having 7 coils?? I recovered really well after my bleed but it did take YEAES!! Now I find I have an Aneurysm that needs treating. I've been offered BOTH clipping or coiling whichever I choose. Do you mind me asking you roughly WHERE your coils are?? My aneurism is at ear level so pretty deep & halfway between forehead & crown so all in all really central. When I had the SAH it was at the back of my head so I think it would be a much easier situation to deal with has the coils been needed there or even behind the forehead area but this one I have seems to be in the worst place it could be!! Any information on your coiling would be really helpful to me & might help with my decision as REAL PEOPLE have a REAL opinion rather than doctors where it's just words!!

Thank you

Lynda

[malalatete]

Hi Sharon

My 9mm bi-lobed was picked up in 2014 after Sheffield hoapital were reviewing some scans from 2010 trying to find any clues about why my legs keep on packing up. So I discovered then I have and had had this thing. It is still there...they weren't able to clip it as it has engulfed the artery to my eye so to do so would render me blind. They weren't able to coil it - a 9mm double bubble has an opening that is too wide for the coils to stay in place. So in June they put a flow diverter (like a perforated stent) in my main carotid artery and I go back for a neuro angiogram in 2017 to see if annie is deflating at all.

I was desperately frightened of it all to begin with, no point in not admitting it. It was large, misshapen and I have been suffering with many life-altering neuro symptoms since 2010. It seemed this could be the answer. But it wasn't. And as time has gone by and the usual treatment options have been excluded one by one, leaving me with only the FD which may, or may not, work I have learned to accept that it is there and that I know about it. I can't change any of that now. So I let it be in my mind occasionally but I refuse to let it occupy my every thought. Life, after all, goes on. And on the day when it no longer does, there will be very little I can do about it!

It feels like a death sentence but it isn't. It can be a life affirming experience in the end. You are still here - in spite of your brain's little foible - (and 3mm is little in neuro terms) and having this may bring you to a greater appreciation of that. Mine did for me. Truly every day is a gift. That took a while to get to, but I know now what a blessing such a perspective brings.

Very best of luck on your journey. Like Gaia I would strongly recommend the Headway site for all things neuro.

[sharon62 in reply to malalatete]

Thank you again for telling me your story it does help to here others are carrying on and yes once i have got over the initial shock and talked to neuro hopefully i will feel better. I will definetly take a look at that Headway site suggested i have so many unanswered questions in my head about it.

Once again thank you for taking the time to reply it does help.

[Jennifer53]

Lucky you. Most are not found until they bleed, You now have the opportunity to have it treated either by coiling or clipping. Dont panic the coiling procedure is very easy. Done through the groin so no open brain surgery, Your sinusitis may just have saved your life. Good luck

[sharon62 in reply to Jennifer53]

Thank you

[Jacacr]

I understand your fears, I too had my 4mm aneurysm found 'by chance' ... a total shock! and fear that I had a ticking time bomb!.... I opted to have it coiled (as I had private insurance) vascularly, as I didn't like the thought of the very invasive open surgery for a 'small' Annie. My surgeon didn't actually use any coils just a flow diverting stent which he said was all I needed. It was scary but on waking up after surgery, I hadn't so much as a headache! in fact if someone had told me I hadn't had it I would have believed them! the groin wound was a tiny thin line, no stitches, I recovered really quickly and every thing is fine. But now I think back, I feel I rushed into it, in fact I feel panicky when I think of the risks with the op (stroke etc.,) and the chance I took. I also felt that after the op I would be on top of the world with nothing to worry about any more, but not the case, I still worry about any little pain or twinge and was also told that I had a mirror Annie on the other side !! but prob less than 1mm and they would not do any thing about one so small, so now I have to just live with that anyway! ..... Think long and hard about if it is really necessary to have it done. A wise surgeon told me - that I was not in any immediate danger and I should take a long time to consider if anything , what to have done, as many people live with Annie's like this, so is it worth the risk. I felt I rushed into it, luckily everything is ok, well I do get 'silent migraines' and a bright white floater in one eye, but is this anything to do with op? they say not, I don't know, its not serious but always on my mind. Good luck with whatever you have done, if anything

[sharon62 in reply to Jacacr]

Thank you for replying, it certainly gives me something to think about and Yes that`s exactly how I feel with a ticking time bomb in my head, I certainly will have to wait to see what neuro say and then make my decision from there. Still having vertigo attacks at moment too so have to see ear nose & throat as not sure whats causing them unless its sinuses.

Thank you

[Hidden]

Awful shock for you but believe me things will settle. I also have a 6mm Mca trifurcation brain aneurysm mine was found accidently too last May. All so scary and it's all the unknown. I saw two neurovascular surgeons and was told it was in a low risk place low risk size and they said It is saver to leave it alone and they honestly tjink something else will kill me. Blood pressure must be kept very good if not medication for it. I exercise and I swim the swimming also helps me mentally.

Please let me know what decision has been made. Really intetested as we both have same location.

Take care

Pam x

[sharon62 in reply to Hidden]

Hi Pam

Thanks for the reply, I wish they would hurry up with appointment as its worrying whilst waiting and many unanswered questions, not feeling great at moment at this acute sinus problem hasn`t been sorted yet so although on vertico tablets and some for migraine keep having dizzy spells. I will let you know as soon as I find out.

Yours is double the size of mine so going off they are leaving yours maybe that's what they will do with me. Are you having regular check ups for it though.

Thanks

Sharon

[Hidden in reply to sharon62]

Hello, doubt if this will make you feel better but I waited 9 weeks to see neurosurgeon I phoned on a number of occasions and they put it very polite but I was routine. I'm not sure if you live in England but the hospital I am under for this condition have these advanced nurses who you can ring...If possible try and see if they have and get there phone no they are big help.

I found out that my case goes to committee and they have people who all get together look at scans and decide what way to move forward They are the professionals listen to them.

This is very scary it's untrue how it can make you feel I started to get panic attacks but they are going now I ended up in hospital twice just because of the stress of it all. I'm routine lol and I have to believe them 😊

Pam xxx

[Hidden in reply to sharon62]

Sorry I forgot to say yes I'm been monitored and I've had a second mri since they found it and it had not changed at all which is great no bigger hooray and I get another scan later this yr. 😊

[sharon62]

Hi Pam

Yes i am in the UK northwest England. Oh right might have to wait a bit then before appointment. Especially with Christmas holiday slowing things down.

Thanks for reply.

[Navillus]

Hi you're not alone in feeling very scared. I've just been diagnosed with right middle cerebral aneurysm too found by CT scan. They can deal with mine by coil or endovascular only open brain surgery and absolutely terrified. Finding it hard as family refusing to talk about it

[sharon62 in reply to Navillus]

Hi Thanks for reply, I'm still waiting to see neuro about mine, do you mind me asking what size yours is. It must be terrible having no one to talk to.

Was you poorly first as well is that how they found it?

Thanks

Sharon

[Navillus in reply to sharon62]

Hi Sharon

I was getting headaches. I have already been under neurosurgical team for trapped nerves to my spine and had to have surgery in 2014 as could walk with left leg. At follow up I mentioned I was having headaches so they referred me for MRI, then CT Angiogram. Mine is 8mm. My neurosurgeon told me they don't generally operate on those under 3mm as incredibly common with 1 in every 15 people having them (probably not knowing unless found under CT or through accident) but not worthy of an operation as such just yearly monitoring. Unfortunately mine isn't like that as fusiform 8mm on 3 arteries so can't do coil or endovascular or even shunt hence Open brain surgery for me.

[Hidden in reply to Navillus]

Hi was wondering if you have had surgery on your mca brain Annie.

Hope you are good

Pam

[sharon62]

Oh dear, very worrying, thanks for sharing your story with me, I wish you all the best for your operation. It does help whilst waiting for first appointment.

Sharon x

[Navillus in reply to sharon62]

Sorry for not replying sooner Sharon. Thank you - been watching Hospital and giving me more confidence as lady had very similar to mine and her op went well. They ve moved surgery forward to June instead of July. It's the waiting that's a killer coz every twinge you're a bag of nerves.

Have you heard about your appointment date yet? It's not easy waiting is it.

[sharon62 in reply to Navillus]

Hi I agree the waiting is the worst, yes got my appointment for 15th March, they certainly don`t rush.

[Navillus in reply to sharon62]

Glad you now have a date. My husband is still waiting for appointment been months. Unfortunately they have so many to see. You just have to remember when you eventually get to see them they generally do amazing work. I do empathise though it's on your mind (excuse the pun) all the time and agree scary place to be. Seems to be everywhere you look as well. Every time I turn the TV on, read a book, magazine yet not really acknowledge before that. We have to be thankful found but fingers crossed for you time goes quick so you get some answers. The admissions lady said they are so busy and the worst year they have ever had. The neurosurgeon said 1 in 15 have aneurysms and generally know nothing about them. I guess it's just try not to get high blood pressure. Don't smoke, eat healthy and try to carry on hoping time will pass quickly. I hope you get some answers shortly and time goes quick xx

[sharon62 in reply to Navillus]

Thank you for the sound advice and like you say when you start to look into it it is amazing how many people have them. i think it is the initial shock and then you dwell on where it is. I am so glad I found this group though as it really does put things in to perspective when you here other peoples stories.

[Hidden]

Hi, hope your keeping well. I have read your post about your outcome at hospital and you have been told exactly the same as me. Hope your feeling better about things it will take time for it all to sink in. Take care of yourself and we are all in same boat🙂 xxxx and here for each other xx

[sharon62]

Thanks mikey, it does help to know others are the same.

[Hidden in reply to sharon62]

Hello, reading all your posts again and got me wondering how are you. xx

[Casandra37]

Hello Sharon62,

I am so sorry to hear about your brain aneurysm. To repair an annie , ionic copper ( if you are deficient ) vitamin C , rutin, hesperidin and aortic mesoglycans , all this are vital for blood vessel integrity and elasticity .

Take care and all the best