Scary find

[BERTHA12]

Glad I found this site. I was diagnosed with 5mm basilliar tip aneurysm 15 months ago. Incidental find. It's going to be monitored every 2 years. I am terrified every day that it could rupture. What do you guys do to reduce the risk of rupture? I'm scared to do anything.

[Auldhen]

Hi Bertha I had a subarachnoid haemorrhage 4yrs ago suddenly Apparently I am luck to be alive, was coiled by a fantastic surgeon through the femoral artery. Not that I knew anything about it. Was in hospital 3 weeks and had fantastic care at LGI. I have scans every year to check it, don't feel you can stop them happening. But hope someone makes a comment that can help us. All the best love, don't be scared of living your life to the full. Xx

[BERTHA12 in reply to Auldhen]

Thank you Auldhen for your reply. Glad you had a happy ending. I'm just so scared all the time. I am trying to stop smoking (not easy after 40 plus years). According to good old Google laughing,crying,bending,lifting,smoking,drinking can all cause rupture 😱 where was your Annie? How big was it x😬

[Alibongo60]

Hi Bertha, like you I have a basilar tip aneurysm, it was found accidentally in 2012, I had stents and coils fitted the following year, and it behaved for a few years. In 2016 I started feeling more unwell and it was found aneurysm to be growing needing more coils. I had always been told because of where my Annie was if it ruptured it would be catastrophic, so when walking the dog it ruptured, it was completely out of the blue with no warning, I was very lucky to be found by a very nice lady who stayed with me, and got help for me. I spent a month in hospital, further surgery, to have more coils fitted, but I recovered fairly well, I have short term memory problems, my brain swaps words, like I have visits from penguins in my back garden, considering I live near Manchester that’s not bad, my balance can be poor, all these worse when I’m tired. I did return to work on reduced hours and work load, this I have since had to medically retire now as I have developed mini strokes, this started three years ago I ended up in a Spanish hospital on holiday, wow that was a nightmare, on return it was found my aneurysm was so big it was pressing on my brain stem, and felt safest to leave well alone. I felt it was a death sentence, my neuro surgeon said he had someone still alive after five years, however having yearly scans, my aneurysm, which has always been very unpredictable, has decided to shrink, at the moment I will take that , I don’t know what it means for me and I don’t ask because I don’t think I want to know, just make the most of every day . I wish you lots of luck Bertha, yours is very small, and chances are will behave , I hope I’ve not frightened you with my tale but I wanted you to see that the experts don’t always get it right, that miracles do happen. They say the most important thing you can do to help is to stop smoking if your a smoker, wish I’d never started, I have breathing problems now which I find harder to cope with than the brain ones. Lots of love Alice xx

[BERTHA12 in reply to Alibongo60]

Thank you Alice for sharing your story. How scary your story is and I'm so glad you survived the event. My neurologist is reluctant to do stent or coiling because of the location and the small size of the aneurysm. What size was your Annie when it was found? They say high blood pressure can cause a rupture. Mine is low to normal. I wish they had never told me about it to be honest. I just live in fear now. There is very little support out there and the doctor's just say don't worry. How do you cope?.

[BERTHA12 in reply to Alibongo60]

Did you manage to stop smoking Alice😬😜

[Lulu_Lollipop]

Best wishes from me to all with brain aneurysms. Are you being monitored, Bertha? What have they said to you? I had a large aneurysm clipped in 2017. It was found by chance and I have no idea how it hadn't ruptured as it was 22mm x 14mm. I was told in a light-hearted manner to avoid getting constipated and avoid sneezing, but that was advice given by the ENT man who spotted it on a scan for my tinnitus. I was told to just carry on as normal. Waited 6 months from diagnosis to craniotomy. I have had no check-ups since I had an angiogram 5 months after surgery. I hope that you are having check-ups and good communication with the neuro experts xx

[BERTHA12 in reply to Lulu_Lollipop]

Hi Lulu. Thank you for your comment. WOW what a size yours was😱. My Annie was found during a scan after my face drooped in June last year. I was referred to Sheffield hospital and had a MRI in September. I received a call confirming the Annie followed by a letter. The phone call was to say the team had decided to do a MRI in 2 years time and didn't feel surgery was necessary at this time. That's it. No other input. I rang them a couple of weeks ago and said maybe scan yearly not 2 yearly but he said it's not necessary. So that's that. I sort of feel abandoned. My anxiety is through the roof. I am just so scared. Wish they never told me. Ignorance is bliss 😜😜

[Lynnie1975]

I had two reputered basilar tip aneurysms when I was 21 (25 years ago). I was living in Germany at the time and was airlifted to Heidelberg, where I had them coiled (coiling was VERY new then. I was only the 23rd person to have this op in Germany). As the procedure was new, they were unable to totally occlude one of the aneurysms. I went home to Aberdeen and had a further unruptured aneurysm clipped a year later.I didn’t receive any follow up scans on any of my aneurysms until I had a totally unrelated vasovagal episode in 2018 and the A&E doctors referred me to the local stroke clinic. The stroke consultant referred me to the neurosurgical unit in Edinburgh to get the status of my aneurysms checked.

Unfortunately, the basilar tip aneurysms had recurred so I had to undergo coiling again in 2019 (this time, I got a stent inserted to keep the pesky coils in their place. Aneurysm treatment has come a LONG way in the past 25 years 🤣).

Just had my one year check (delayed a year due to covid) and my aneurysms are all totally occluded. I will be rechecked in 5years time, as my case is a complicated one.

Aneurysms are very common (I was told that it’s thought around 1 in 50 people have them). But not all aneurysms rupture. But yes, as soon as you know it’s there, you can’t help but worry.

I asked my consultant at the time what I could and couldn’t do to prevent my non-ruptured aneurysm from bursting. He advised that the only thing he would not recommend me doing is bungee jumping (and he wouldn’t recommend doing that anyway as it’s dangerous 🤣). It’s reassuring that you’re being monitored every two years. To me, it shows that your aneurysm is not big. If it was, and was likely to rupture imminently, they’d have you in to treat it sooner. ( just a side note, I gave birth to two children whilst my aneurysms were unchecked and probably growing and they didn’t rupture during childbirth)

If you do have to undergo coiling, don’t worry. It’s by far the best option for where you aneurysm is (IMHO). Less invasive and less risky, I believe, than clipping.

Hope this helps? 😊

[BERTHA12 in reply to Lynnie1975]

Thank you so much for sharing your experience. I feel more assured. I try hard not to worry. My Annie is 5mm and the neurologist says it's low risk of rupture. 1-2% in the next 2 years 🙏 my worry is that I am struggling to stop smoking after 40 years and I read that can cause a rupture. I must try harder. The anxiety makes me smoke. Visciuos circle. Did your Annie rupture?. You have been so brave. It's lovely to be able to share my concerns and thank you for taking the time to respond to my questions and fears. I truly appreciate it. X

[Lynnie1975 in reply to BERTHA12]

My basilar aneurysms did rupture but I had another unruptured aneurysm at a different location (not a basilar one). I was ‘lucky’ as I had a slow bleed. They actually thought I’d trapped a nerve in my neck as I was so young, so I was walking around for two days with a subarachnoid haemorrhage before I was taken to my local hospital for further tests. They reckon my aneurysms are congenital but just a ‘quirk’ and not caused by any underlying health condition (there is no history in my family of cerebral aneurysms so that’s good).

I’ve also never smoked but I believe that there can be a link to smoking and aneurysm rupture because smoking thins the veins and cause them to be more fragile (but I’m no doctor). But I totally agree. It’s definitely a vicious circle. I hope you can quit (but I’m the daughter of a smoker so I know how tricky this can be, especially in times of stress).xx

[BERTHA12]

Thank you for this info. I keep getting headache right side of head with tingling in face. My neck feels like trapped nerve. I had a scan last December and they said it's migraine. I'm sure if it was a bleed I would know by now wouldn't I?. I agree about the smoking. I'm off to buy a new e cig now and use 0% nicotine oil. Thank you for reassuring me. You have given me some hope. Can I ask why you went to the hospital and did you have to have lumbar puncture to confirm the bleed?

[Alibongo60]

Hi Bertha, yes I managed to stop smoking, it’s the biggest risk to rupture, so I gave up before I had my first surgery to coil the aneurysm in 2012, I did relapse and went on ecig six months later but have now reduced the nicotine level and I’ve stopped that too. It’s not easy and still could kill for a cig but do tell myself it will kill me ,so makes it easier, and with time it does become easier.

[BERTHA12 in reply to Alibongo60]

Thank you for your reply. Good on you stopping smoking. I'm finding it really hard to quit 😭. I know I need to 😜

[Alibongo60]

My consultant wasn’t overly concerned with the ecig, as proper cigs, so I stayed on those and every few months reduced the nicotine level until I was down to the lowest. I found it harder to come off these because they are still like having a cig without the dangerous chemicals. My Annie was eleven mm, going up to fifteen, before she ruptured, it is frightening to think we have this in our brain, but so do quite a few of population and they don’t know until they rupture, at least we can take some precautions to try to help,but must admit I dread sneezing, I don’t do delicate little sneezes any more they feel like they are going to take my head off, I also seem to have developed Tourette’s, I never used to swear but can like a trooper now when I sneeze. Feel free to drop us a message any time, take care and keep trying to give up the dreaded weed, lots of luck love Alice xx

[BERTHA12 in reply to Alibongo60]

Thank you Alice. Your comments cheer me up. I would love to keep in touch. So glad you are ok now. I have so many questions I would love to ask you some time. You take care too.x

[Andersl]

I've been in your shoes. My aeurysm is in a different place but the fear of it bursting was an emotion that consumed me night and day in the first year. I even started taking antidepressants.

Then I got cancer and overnight I switched off about the aneurysm! Didnt even realise it

When we're told of the presence of an aneurysm we are better placed than the thousands in this country who walk around unawares. Ours is on record so if anything happens the information is available for the ambulance and treating drs to see.

I wear a rubber medical alert bracelet so that medics can easily see what could be the cause and my hospital consultant name and hospital number.

It's the first thing that comes up on my gp practice screen so I'd advise you get that organised.

I'm followed up every 2 years. Its standard protocol. If it grows they will identify it on your next mri. But dont forget it may not grow at all!

Mine hasn't since first diagnosed in 2017

.I've taken out power of attorney for health and welfare and another for financial affairs. I also have an Adavce decision Directive. These give me assurance that my children can take over my affairs smoothly if necessary.

My advice would be

Do what you can to plan for worst case scenario and switch off...

Lastly

You're more likely to die of something else !

Hope this helps

Louise x

[Eilidhmac]

Hi Bertha, I feel very much like you at the moment but I haven’t had the Neuro consult to decide what they are doing… or not doing. Not sure where my aneurysm is but it is 6mm . Dr has told me this today so I am in a bit of shock. … was found incidentally and I had hoped it was smaller. I did smoke years ago but managed to stop eventually…. Not easy I know.

I am getting eye pain and headache on the right side of my head and can’t stop worrying about whether it is the aneurysm . I get it every day… 3 weeks now and it is getting me down. Dr says it is not necessarily the aneurysm but I can’t get that into ( or out of!) my head!!

How long did you wait to see Neuro, and how long have you had it now. It seems such a lonely place to be and as I am alone anyway it is hard to switch off my worries. Just need someone to talk to I guess

Take good care of yourself… hope the smoking cessation is working for you. Xx

[BERTHA12 in reply to Eilidhmac]

Good morning Eilidmac. I really feel for you. It is such a shock when we are given this news isn't it? Mine was found incidentally in June last year and I had to wait until around September for the MRI to get the exact size and shape of the annie. At the incidental find on a CT scan they said it was 7mm but the MRI said 5mm so you never know it could be smaller. 🙏. I also get pains in the right side of my head nearly every day. They scare me a lot. I rang my consultant and he reassured me that very rarely do aneurysm cause headaches ( unless they are HUGE). My consultants decided that there was more risk to operate on mine than to leave it alone for now. It is a lonely place. I have not seen anyone face to face to discuss or talk about this due to the lockdown. All my bad news was over the phone. It was like " this is what you got, this is size, this is why its best to watch and wait, see you in 2 years" I have cut smoking way down but still struggling. I use e cig with no nicotine and have a few skinny roll ups a day 😱. I only found out the position of my aneurysm in the first place by reading my discharge notes from the hospital lol.Always here to chat because like you I am worried and feel alone. This site is good and some lovely people have answered my questions to try to reassure me.

[Eilidhmac in reply to BERTHA12]

Thank you so much for replying…. I have been pinning my hopes on seeing a Consultant face to face as there are so many questions! I had an ENT appointment for endoscopy last week as the CT scan also showed a mass in my neck! Luckily, they found nothing sinister but t was another scary appointment! Do you live alone? I am on my own and it is hard. Seems like I have just been sitting dwelling on it for weeks, and now the news about the size has thrown me again.

Also difficult talking to friends and family as I feel like they are feeling sad for me and I don’t know how to react to that. I did stop smoking years ago but my blood pressure goes up to a ridiculous level when I am stressed… so that isn’t good.

I hope that we can keep in touch…. Where do you live. I don’t know if we are allowed to message personally on here or not. I w

Thank you again for replying so quickly.

I wish that I could be stronger about it all……we will probably be fine and never have a problem with it but it is the nagging uncertainty that takes the joy out of the day. Take care and stay safe and well. X🙏

[BERTHA12 in reply to Eilidhmac]

Thank you. I live in south yorkshire and I live with my Husband. I know what you mean about the joy being taken away. I must admit I am getting better at coping with the news. I am 56 years old so I am hoping I have many more years ahead of me. The right side head pains have been diagnosed as occipital migraines although I find it strange that I would have these nearly every day???? I hope that is all it is 🙏. Reading some of the stories on here helps me put things into context. Some people have had huge aneurysms and have survived them. I monitor my blood pressure as the consultant said high blood pressure is a threat to us. I have learnt deep breathing to keep calm and this helps. My blood pressure is fine now and when stressed I deep breath and it comes down. I guess we have to take it a day at a time and enjoy every moment we are here. I admit I think about it a lot and that cant be good for me. I like you dont discuss it with family as I know it frightens them and I dont want that. Lets hope you get to find out where your annie is and hopefully you wont need surgery and just watch and wait and be scanned every couple of years. xx

[Eilidhmac]

Thank you, I am in South Cumbria. I had episodes of high blood pressure with anxiety attacks at the beginning of this year and had to go to A&E twice when it topped 200 systolic! 😵😵 I am better now and daily BP is around 115/70 but still shoots up when I go to clinics and such! Really don’t know how to control that. It is so weird re the right side head pains… I have it every day and pain above my right eye too which is scary. I’m glad that you have had a Diagnosis for that as it must be a relief to know that it isn’t the aneurysm. Thank you for taking the time to chat and hope that we can talk again soon.

Keep keeping on top of the cigs….. I tried to stop many times before I managed… for many years I smoked only now and again and usually other peoples!! Or bought a pack of ten for a night out. Or when I had a crisis I popped to shop and bought 10 .. , smoked two outside ( hiding behind bins) and then threw the rest away! I haven’t had one now for over 1O years … but sadly the damage was done. Never give up giving up as they say. Take care and thanks again x

[BERTHA12 in reply to Eilidhmac]

Thank you. That's a good blood pressure. I will keep trying with ciggies lol. You take care too. Stay safe xx

[Eilidhmac in reply to BERTHA12]

By the way, do you drive at all. I am not sure about driving. Dr says it is fine, but I think I have to tell the DVLA? Any thoughts on that would be helpful. Thanks. X

[BERTHA12 in reply to Eilidhmac]

Hi there. I no longer drive can't cope with the stress on the roads x

[Eilidhmac in reply to BERTHA12]

I see, thank you. . Roads are a lot busier than they used to be to be sure. I still manage(d) to drive to see my family in Scotland and to get round and about town. Hope I can continue. X

[BERTHA12 in reply to Eilidhmac]

Hi there. Hope you keeping well. I have to say that without being dramatic I also chose not to drive as I was worried That if my aneurysm burst while driving and I cause accident for someone else. I would never forgive myself. Everyone's choice. Also I don't know if there would be any warning so I don't risk it. That is my own personal fear and no judgement on anyone elses decision to drive. I'm glad you get to visit your loved ones. It's a lonely place we are in. Keep me updated with your health. Hope we still communicating in 20 years 🤗

[Eilidhmac]

Thank you and I fully respect the way you think. No reason why we shouldn’t be here for many years….. we have every chance given the odds. Take care and stay strong. Xx

[BERTHA12 in reply to Eilidhmac]

You too love x