hello

[burtongal]

hi, im new to this forum , just wanted to see if there is anyone on here who has had or has a brain anuersym , i was diagnosed with one in may this year , it is 20 mm in size and the shape of a doughnut , my surgeons word not mine ,the middle section is a blood clot , i am awaiting a date for a brain operation , im very scared so wondered if anyone has any information thank you in advance x

[Shon48]

Heavens yours is creeping up to mine. Mine is 28mm, unruptured which has been coiled with 17 coils and two stents. Have they told you what they want to do with your aneurysm?. Ask as many questions as you need no matter how stupid they sound . 🤗🏴󠁧󠁢󠁳󠁣󠁴󠁿

[burtongal in reply to Shon48]

hi hun thank you for the reply , oh gosh 28mm thats huge how do you cope emotionally physically etc how long since your diagnosis ,i have been to see the surgeons who offered me 3 options , leave it but with a 12 per cent chance of it rupturing within 5 years and maybe death , (i dont no the proper words for the next bit so bear with me lol ) the groin operation but risks of lots of stuff plus another operation in time , open brain operation 10 per cent chance of a stroke , so i have decided to go for the last one ,am i crazy i feel it at the moment x

[cat3]

Welcome m'dear. Pease remember that whilst brain surgery is mysterious and scary for you and me, the neurosurgeons are highly skilled and perform these procedures every day, and each patient is special to them.

I had a brain haemorrhage back in Dec2011 and the bleed was stemmed by inserting a titanium coil into the aneurism intravenously via a blood vessel accessed in the groin. So my only 'wound' was a tiny incision in the groin which was pretty insignificant.

I was hospitalised for 2 months and have residual issues, not from the coiling but from the damage caused by contamination of the bleed itself. Coiling of an unruptured aneurism has fewer (if any) after-effects, especially if treated intravenously as there's no invasive surgery involved and hardly any infection risk.

It's best you understand the procedures involved as some degree of knowledge reduces the mysteriousness of it all. Facing the issue head-on is empowering and, by putting your trust in the neuro team and taking onboard their advice and plans, you can take back some emotional control.

My surgeon was the loveliest person and SO pleased at my progress. He delighted in showing me before-and-after scans and telling me how special every patient is, and what pleasure he gets from 'fixing' people.....

Can I ask why you've opted for open surgery and whether it's the preference of the consultant...…..perhaps an issue of the aneurism being otherwise inaccessible ?

Any questions m'dear, please ask away. PM me if you prefer. Love Cat x

[burtongal in reply to cat3]

hi hun thank you for your response , its so nice to talk to others who are or have been in the same position as me ,im really scared and alone , my family think im being over dramatic and a drama queen ,i have opted for open surgery as i feel it will give me my life back , as in just leaving it and just monitoring me i cant deal with as i feel its a ticking time bomb in my head and i do not want my son to find me dead if it does burst ( as surgeon said i would probably not survive a rupture because of size shape etc ) going through the groin would mean more operations in the future , i am not strong emotionally for that ,so open surgery feels the way to go as my surgeon said once i have had the operation i will be fixed ( so to speak ) i can not rember every single word they said at my appointment just over 2 weeks ago but rember the basics ,

fingers crossed i will get the operation sooner rather than later as i feel im in limbo at the mo xx

[cat3 in reply to burtongal]

I've just read your reply to SAH-survivor explaining that your aneurism isn't suitable for coiling, so that explains why you're opting for open surgery.

I've lost count of how many folk here have come through that particular procedure and I hope it won't be too long before you're posting to tell us your aneurism is fixed and all's well.

Of course you're scared, and of course you're worried for your son ; but your surgeon and team will be highly skilled and will have the best of technology to achieve a safe and successful outcome.

We're always here m'dear and ready to listen if you need to talk..... Love Cat x

[SAH-survivor]

Hi Burtongal

Hope you are ok. I, like Cat, had a ruptured aneurysm so the bleed has given me all the problems since. If you have the choice, you are in a good position. Like Cat said, open brain surgery is more invasive. If they can fix it with coiling, I would go for that option.

Hope this helps.

There is a Brain Aneurysm Foundation website which is based on the US. It might be worth looking on that as it is for brain aneurysm patients only.

Thanks

Xx

[burtongal in reply to SAH-survivor]

hi hun thank you for your reply .im ok just in limbo at the moment as i awaiting the operation , is the coiling operation the one that goes through the groin ? if yes i do not feel i can have that as the surgeon said i would probably need more operations as my anuersym is unique in size shape etc , so open operation is more final and i can then get on with my life hopefully , i just wish my family understood how serious the operation is , they treat me like im over reacting and its just a cold and to stop being so down and over dramatic x

do you have the website address for that u s foundation ??

thankyouxx

[SAH-survivor in reply to burtongal]

bafound.org/

This is the website. Hope you have some useful information on there. Maybe sit down with the family and explain how you are feeling and what the risks are. Because I ‘look’ ok post surgery, everyone thinks I am now fully recovered but do not understand so I make them.

[burtongal in reply to SAH-survivor]

hi hun , just looked on that site its very helpful thank you , some of my family think because i look ok i must be ok , i have told them how scared etc i am but all they say is get well soon or oh my god your such hard work and always moaning about your little problem , so i have given up telling them how i feel , so its good that i found this place as i was feeling very low and alone xx

[SAH-survivor in reply to burtongal]

Hi again

You have to understand that because they are not going through the experience, they wont understand. Everyone on this forum will be so so supportive as they have bern through it so hopefully you will get the strength from us. Post any worries on here and they will always be answered

[Navillus]

Hi I’m sorry you got this news. I know in the beginning I was terrified and scared what to choose. I was diagnosed with 8mm only but was on junction of 3 arteries so had no option but to do open or leave. I’m was given 50% chance of bleed and stroke and told if it did burst I definitely wouldn’t make it. I’m not gonna say it’s been easy as I spent 7 months in hospital but I didn’t have a stroke, surgery went well, I suffered no neurological damage, my aneurysm is now completely gone and I’m getting on with life. I waited a year for surgery initially. I found this group helpful in not feeling so alone and made the right decision for me based on responses. I really hope all goes well for you also. You are fortunate to find before it burst as organised surgery is less destructive than it bursting.

[Joey53]

Dear Burtongal, I just had 2 surgeries to repairs my Brain Aneurysms, had repaired only 1, still have another Aneurysm to treats, I had my surgeries on Charing Cross hospital, the Nurses were a Blesses from heavens! If you do have any network of supports, that's the time! ,fears are normal, in going true such Delicately conditions, if you can acesses some counselling! ,I would strongly recommend, on my case, I'm almost totally alone! As my network of friends +family are in Holland and Germany, but there are several wonderfully charities in this Blessefuly Country, you could acesses, I'm not sure if you could acesses "SASH",They are the most genuinely Tender and Caring people! What's being helping me a lot is my Buddhist meditation; "NAM MYOHO RENGE KYO! ,and there's a wonderful +friendly +supportive center in Russel square "SGI ".

Being sending you good vibes/prayers,

Shares as much as you can, to helps to release the much pressure!