Brain Aneurysm Awareness UK
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5.4mm Basiliar aneurysm ,I am new here

Hello, I have been following this forum for a wee while and decided to share my story and ask for advise.

I am a 50 year old female living in London and had a MRI and Angiogram in Charing Cross Hospital. Like many of you have had difficulty getting actually results without chasing, but since have now met the neurologist and he has corresponded very quickly. (i did say to him that i had been having issues)

My family has quite a strong history of Brian Aneurysms with my grandmother, aunt, cousin all dying from theirs. My youngest sister had a ruptured aneurysm 17 years ago and was treated instantly and recovered well. We all got checked this year and another sister has also got a small 3 mm aneurysm. She is waiting to see the outcome of the next scan.

The neurologist has suggested that I have coiling done ( too difficult to clip) and I am waiting to meet with the radiologist who would do the procedure. The neurologist does not perform coiling, only open surgery. I went into my meeting with a lot of research and had watched the seminars on unruptured aneurysms by the leasing US Hospitals which I found highly informative and knew what questions to ask in the meeting - some of which he could not answer as he will not be doing the procedure.

Have any of you had a basilar tip? i know that these are more rare and more likely to rupture? I still have not made my mind up should i have the surgery or not, i am waiting for the next meeting and then if i decide the operation will be within a month or two. I am scared of stroke andI do know that every operation causes a risk. I wish that I have never gone searching to start with! but then another part of me thinks i am lucky to have found it and something can be done with it.

thank you all for reading my rambling note and thank you so much in advance..

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Hello

I’m not able to help you ,with your type of aneurysm,but can sympathise with you when you say you wish you hadn’t found out ,

There still is so little understanding of the brain and the effects of the procedures that can be done on aneurysms ,we are in fact still in the early stages as there are just not the studies out there ,as I agtree with another person on this forum when he says the resources and attention is spent on those with cancer and not those with aneurysms /brain injuries

I wish you so much luck and a swift recovery if you do go ahead with the procedure.

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Thank you so much for your lovely reply. Unfortunately there isn’t a magic wand that makes things go away. Your exactly right about the research as most lay people don’t even know what an aneurysm actually is . Wishing you a healthy and happy 2018 .

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I am afraid I don't know much about basilar annies except that as you say they are said to be statistically more liable to rupture.

I had a 9mm bi-lobed ICA/opthalmic artery annie. Subsuming the artery junction, it was impossible to clip and too wide based for coiling. So I had a flow diverter device inserted into the main artery by a neuro radiologist under general anaesthetic in 2016. 18 months along and the lobe opening onto the ICA has deflated; a 5mm annie remains on the opthalmic artery.

At the time it was discovered, despite all the risks of surgery I desperately wanted shot of it immediately, and was distraught when the surgeon refused to operate because of the risks to my sight and speech centres. I thought the risk of rupture would be impossible to live with. 18 months on and I don't generally think about my still-with-me annie much - or at least it has just flavoured my life differently. I know it could go any minute and I could not be here tomorrow - but life is all the sweeter for that. This is not how I expected to feel living with a brain aneurysm - I thought I would be totally paralysed by fear.

In fact it has been quite liberating. All that stuff that people say 'life's too short...' for - well if I agree, I don't bother! That includes stressing about stuff I can't change, difficult or self-obsessed people, and 'what-ifs'. My other conditions (ME and FND) had taught me over the last 8 years how to slow down, get out of the rat race and value the small things in life. My annie just iced the cake and made everything precious.

You need to do what will make YOU feel settled and happy. My only advice would be to take your time making that decision. You will find out in time what you can come to terms with and what you can't. Your annie has probably been there for years and it has been ok up until now. Unless your surgical team is leaping up and down (and it doesn't sound like they are) there is no rush. Take your time to make what will be a life-defining decision and to prepare yourself to deal with it (I wrote funeral plan, end of life care directives, organised power of attorney etc before I went for my first angiogram - knowing that things were in place to give my family all the support they need should things go pear-shaped meant I went in settled. The actual op was simple after that.) I hope you find your peace soon. Blessings x

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Thank you so much ch you sound like a very pragmatic person - exactly like me. I wish you health and happiness for 2018, will let you know my decision.

Wonder if you went to another consultant would they relook at your aneurysm ?

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Hi,

I had a large aneurysm clipped in early August this year. The consultant a quite young Portugese Consultant a Mr Pedro Castanho who carried out my procedure was working in Hull Royal Infirmary in East Yorkshire. He has since left & is now working in London at The Royal London Hospital. Like yourself I tried to research the different options & Consultants to try & give myself the best chance I could. This Consultant was a very special person. Most Neurologists tend to work from the Spinal Cord & up to the brain taking in the Nervous System also. This young man seemed only to work inside the brain only. The total dedication & expertise he showed has been unbelievable & to be really honest looking at other patients & photos etc. this man has done an excellent job with a hell of a lot more care & sensitivity than the majority would have taken doing internal brain surgery. I had virtually no hair loss with no radical shaving like most surgeons seem to do. I know this is not the most important thing to think about but someone who has real consideration towards their patients would obviously go the extra mile on the important side of the surgery. I did ask about pass & fail rates of these operations he had carried out & his success rates were virtually 100%. I note you live in London & thought if you wanted any second opinion or had any choice then as its serious stuff it might be worth your while trying to maybe get a consultation with him??

Good Luck & I hope you get a brilliant outcome.

Lynda

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I have had 4 brain surgeries, at a top 2% hospital in the nation on anyuresms. I moved to the state for that reason. I have 1 more surgery to go, they are watching it. Angiogram every several months. I say get a second opinion because it's there and needs to be watched. I have had 2 craniotomy a coiling and the new telescopic pipeline surgery. My coils settled in the one and they are watching it close...

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