Recent diagnosis of 6 mm arterial communicating aneurism , my world has fallen apart in seconds of 1 phone call . Hey , there’s not really any support other than been given the news and bam your on your own , google google , I’ve had to stop on google now. . I want to be positive but after this morning at my Gp , basically saying they won’t operate , cause of where it is , I had hope prior to the app I came out went home and I’m numb , can’t think can’t eat properly can’t concentrate dam this thing I will not let u tAke over my life Annie the aneurism I’ve named her Annie it’s easier and kinder on my self right now .
x
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Milley2
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Please dont let this terrible fear take over your life. GP’s are not the best to consult over these scary diagnosis.., though you can be referred by them to any vascular/brain surgeon.
I know ... as I was in this position 5 years ago. I know how consuming and completely terrifying it all seems right now.
After trawling about quite considerably I ended attending Liverpool Neuro and found the brilliant Vascular surgeon Mani Putheran. I was diagnosed with 5 brain Annie’s but he has successfully repaired the largest 6.2 mm I have annual MRI’s to monitor the others.
Many have brain aneurysms but you are really only at high risk if you have a family history of members who have had fatal ruptures of aneurysms.
Please don’t lose hope even though you’ve been informed that it is inoperable. Different surgeons have different opinions.
Don’t get disheartened... press on in a positive way and get the answer you need.
I don’t know which part of the country you are in but I would highly recommend the Hospital of Excellence Walton Centre in Liverpool.
Please don’t hesitate to contact me and don’t let the isolation of this situation get to you...., there’s lots of help out there including this site.
Ahh thank you , I am going to London Bridge hospital under dr Chris uff .
And hoping he can help me. I’m fuming at my Gp fir telling me this I came out and thought great no bloody hope now . Although the isn’t a neurologist , he said from only his medical knowledge they would leave it , the thought of it sitting there left , makes me more edgy , I guess like the time bomb thing. X
Yup get that!!! But due respect they are GP’s... it’s only when you to specialist level that things change drastically and you can put your trust in them.. honestly been down this road for years!!!
Will do , Tuesday can’t come quick enough I have the brain scans for him on disk and a nhs referral to him . First visit I decided private as I need info on options I will let you know xx
I feel for you, I had no warning of my Annie until it burst, having made a decent recovery had scans a few weeks ago and am awaiting wether they want to operate again. If I get the choice I will opt for monitoring rather than an operation. Hope you can get your head around it, I have had no choice but try to carry on life.
Hi , it’s weird isn’t it one min your fine and then the next you just get told , mine hasn’t ruptured yet ,but of course I’m very aware it could ,trying not to wrap my self in cotton wool so to speak 2 weeks ago I was unaware of it now the Annie has completely taken over my world my thoughts when I eat when I’m watching tv it’s ridiculous . Last night was bad though think I was hAving a panic attack trying to get to sleep I was very restless . I do not know it’s exact type yet but all Gp said was doubt they will treat it I was so angry and upset I broke down when I got home . Talk about not stressing I don’t think he should have said that to me .
What part of the country are you ? .
And did they tell you much about yours or what type was it and where ?
Don't know what type or any other about it apart from it was on right hand side near frontal lobe, ruptured and had surgery in Preston hospital after collapsing whilst in Blackpool hospital rushed to Preston for surgery (7 hours) at follow up they were talking about another operation, just had scans and awaiting their decision. My aneurysm was coiled and I'm getting better daily but sometimes get overcome by a sense of Doom which passes and then try to just get on with things. I have polysystic kidney disease of which aneurysms are reasonably common side effect.
Hey Milley. What I would say to you is that at least you know it is there AND because it is over 6mm they will operate. I had one in the same place and didn’t know until mine burst...it was only 5mm. The neurosurgeon I was under said, I was just lucky as they do not operate if it’s under 6. The coiling procedure is not invasive. It is the unexpected bleed that causes the ongoing problems and changes your life. Hopefully, when you see the neuro, you can give some thought to the right option. Remember too, you are fortunate that you have options. For others they only know when it ruptures and for some it’s too late. I don’t mean to be negative and completely understand your fright bjt you are lucky that you can emotionally prepare. Please feel free to ask anything else.
Ahh thank you . I’m on my own so I’m panicking a lot . Yet 2 weeks ago I was fully active doing my garden shopping , eating out . Now I feel at my lowest ever in life . Every little twinge in my head or head ache I think this is it .
As I said on one of my earlier posts I had pysio on my neck in dec 18 , my neck pAin got worse my sinus is weird I’ve got like this post nasal drip thing , routine eye test showed something too ,exiting for app there , I dunno since I went pysio I’m convinced he has done damage to me
As he forcefully manipulated my neck to the left I felt sick at the time and told him do not do that to my right side , now all this and prolapse c 5 and c6 disc I’m so confused or maybe it’s just bad luck and the Annie was there all the while xx
Ypu won’t believe this but the day before my annie ruptured, I went to an osteopath who cracked my neck. The following morning I woke with an excruciating headache and had surgery the same day. I would not recommend having any neck clicking of any sort. I know the 2 weeks waiting is tough but like I said at least you know. You have got to see the positive in that. I had a very heavy blood load and am paying the price but god willing, you will be fine once you see a neuro. Can’t you get an appointment earlier.
Wow ,that’s interesting ,do you think it’s connected ? I’m not trying to pass blame but I’ve said since he has done that I now have all theses problems xx
I don’t think he has created the annie - that might have been there for years. But the pressure may have triggered the pain which in hindsight is a good thing
I’ve read that neck manipulation not done correctly can damage arteries then to form an Annie ?
I’d never go back I didn’t ask for him to do that god knows the pain I’m still in with the discs
But the Annie is my main concern right now x
Best to have surgery if given the chance, as previous reply says it's the bleed that causes the damage rather than the surgery, I was in and out of hospital within 6days, although norovirus on the wards ment I was never out of ICU and released earlier than expected.
Hi. It's wonderful that you will see consultant so soon. I had to wait several weeks here in Glasgow. My aneurysm is on pericallosal artery, which as far as I understand , is tricky to treat, but also risky in terms of rupturing, even when small. I completely understand how you are feeling. It is so frightening to be given this diagnosis. All the very best to you.
It’s only because I have paid private for this first app no one is telling me much only Gp who says they won’t touch it . I get weird pains behind my eyes so it’s obviously doing something in there right now best time for me is when I sleep . Then soon as I wake the doom is there
Hi. Mine was discovered last year when I had dreadful pain in my head whilst lifting weights. Daily headaches above/behind eyes since. Have been told it is not related to aneurysm, despite never having those symptoms previously. Apologies - hadn't realised you had arranged private consultation. I read an article a couple of weeks ago about your consultant in the mail on Sunday. Very positive. You should Google it if you get the chance
Hi nothing has been done as at 4mm last year was told little risk, although I am no so sure about that. Everything I have read about pericallosal aneurysms states it is high risk even when small. I am also too scared to exercise, which was a fairly big part of my life till last March. It is very frightening to live with. Hopefully Mr Uff can help you. The article was very interesting in terms of the technology he was using to undertake procedures. I am waiting on results from MRA in July, so don't know if there have been any change since last year and if so, what the options will be, if any. Take care
I think just the whole thought of it what ever the size is alarming . I don’t exercise but do loads of gardening which has always kept me active and work meant I was to tired to go gym after a days work so my fitness was gardening painting doing all my jobs at home .
I eat quite well to .
Lots of fish chicken salads avocados and never had to watch my weight . Do like chocolate though and coffee was prob my worst at work
I bet you miss the exercise ? What part of the country are u ? Yes his technology was interesting wasn’t it .scarey too
Hi yes I miss exercise very much indeed. I am in a little town near Glasgow. It is very scary and debilitating. I find that I am so fatigued, but again told not to do with aneurysm. Very frustrating. Will see what results of MRA show. Those should be available next week in line with the NHS waiting time clock, then hopefully appointment with neurosurgeon to discuss, but I am not optimistic that any treatment will be offered, despite symptoms worsening. Hopefully you have a better experience.
Hi I went Tuesday this week , Iya a confirmed aneurism at 6mm but on the view it said 6.3 mm so not sure if it’s grown , he said little risk but is getting further images done in 2 weeks if it’s smooth little risk if it’s a bumpy one they will intervene with op , I came out feeling no better knowing it’s there and to just watch it although he was very informative and knew his info on it . Explained that I can still carry on as normal it’s prob been there in my twenties or thirties not sure how he knew that I’m now 53 . No high blood pressure no history in family so in my case it just may be bad luck although he hasn’t seen all my medical history but I’ve never suffered nothing major ever
Only now neck prolapse disc on my neck so pain there which he said isn’t nothing to do with aneurism
Hi I was told little risk also, but that doesn't really help me. I will try to discuss further with neurosurgeon if I have post scan appointment, as being told little risk contradicts all the papers I have read, both historical and recent. It's very difficult to go about your business knowing this thing is in your head. Are you still working?
No I had to stop working as I had neck pain fir nearly a year finally got my scan of neck July this year it showed prolapse disc c5 c6 and that’s how they found the 6 mm in my brain
I can’t go about my normal day any more and yes all what I’ve read thus also contradicts things so I’m no better off really very down in my moods daily
Had similar experience as you. Told about aneurysm (2.5mm cavernous ICA) four days before Christmas, neurologist told me NOTHING except its not a good area for surgery.... ZERO reassurance. And this was an experienced neurologist!! They literally can't/shouldn't say anything re risk because its not their expertise. Especially your GP.
I spent entire xmas holidays googling like mad, freaking out trying to get to a neurosurgeon asap. It was only from doing a huge amount of research and joining a few groups (this one and FB) that I discovered the array of options that neurosurgeons have to treat these aneurysms if needed. Endovascular treatments like pipelines, webs and coiling for areas they prefer not to do open surgery on (and actually have quicker recovery time, like 2/3 days). They have incredible success rates like 90%+.
When I (finally) met my neurosurgeon he almost laughed me out of the place!! He reassured me in 3 secs on how small my aneurysm was, low risk, and that we'd just monitor annually. Obviously other aneurysms do need treatment.
Do not listen to anyone except the experts in this area. Mr Uff is a highly renowned neurosurgeon and you will be in good hands.
Wait and see what he thinks of your new scans, go from there re treatment.
Join group on FB for unruptured aneurysms, I bet you'll find someone with exact same aneurysm area who has had treatment/monitored and is doing well. Its incredibly helpful finding others in same situation with success stories.
Honestly it may not be as bad a situation as you fear it is right now. Hard as that may be to believe.
Hi thanks for your reply , I know I should trust what he says , but I just want it gone so this nite mare would go away and I can be how I used to be . I get weird pain from above my eye area only slightly but he said it wasn’t connected .
I sleep a lot more cause it’s made me more depressed than ever . If I sleep It’s the only relief I get from thinking about it . Silly I no
Did they operate on yours then , sounds like they didn’t . It just is so scary like your need before Xmas ,never a right time to hear this .
Honestly I feel like proper dysfunctional with it
I’m not going out I barely get dressed , my old self has gone , I’m having panic attack’s as I live alone , it’s ridiculous how I’m now living .
Mines 6.3mm I’m convinced it’s growing as these head aches and pains above right eye
Neuro guy said wasn’t connected
Confused really am what’s worst look outside is a beautiful day ,and I can’t even go outside with the amount of doom in my head since I’ve known
What you're feeling is entirely normal!! I don't think i slept for a full week initially, I went down in a spiral, researching, freaking, signed up for organ donation (just in case) etc etc. And then.... i found the actual facts and statistics weren't that that bad, and found FB group of others with similar unruptured aneurysms. They were incredibly helpful and reassuring. I'm a private person but in this case social media was a god send. So that's why i vowed to reach out and help anyone in similar situation in future.
In a weird way remind yourself life overall is risky. Theres 50% chance of cancer for mostly everybody. If aneurysm treatment has 90% success rates its still far far better prognosis than what some people face. In an odd way we are lucky.
Yes no operation or treatment recommended for my aneurysm. So its annual monitoring. Which is scary initially but 8 months later I'm doing ok.
I also have other weird neck/skull issue they discovered too called Chiari Malformation which may require surgery. While having the untreated aneurysm (scary). Issues c5c6 too. So in a way they are my bigger worries than aneurysm.
Please give yourself a chance. Take it easy.
An aneurysm initially sounds terrifying but the docs found it, you're going to great expert, and in good hands. In time you'll have more info and treatment or not will be recommended.
Plus a sinus issue , I wish there was like a little local support meeting group , I know this forum is great and very supportive , it would be nice to have some where to go to .
Big thank you for your info
What size is your aneurysm?
Just seems everything goes wrong at once I’ve had to stop work in July when I found out so that’s a worry to , I just need to catch my breath fir a bit as it all was a shock .
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