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Hi im saffy....just found this site to-night...i have been diagnoised with a 9mm aneurysm and am seeing specialist next week to discuss coiling...i have had 4 weeks of sheer worry....even been putting my funeral plan in a file on putor...but seem to have calmed down abit now...had a scan for trigeminal neuralga.....and they found this....i am really scared..they say ive a 10 % chance in my lifetime ...Im 63... down to 5 % if i have coiling...so do i have it or not ...how do you make that decision...my friends and sister say yes...my daughter thinks 10% is good...any advise would be welcome ...thank you.

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Hi Saffy,

I'm really sorry to hear your news and can understand what a shock it must have been for you. It's a lot to take in and hopefully you can speak to the Specialist next week about your concerns and they may be able to help you come to a decision.

I can only speak from my own view point and following the aftermath of experiencing a SAH, as to whether I would have further coiling if needed .... and my answer would always be, yes.

I may have to have further coiling at some point and even though I would be worried, I would rather have the coiling carried out, up against living with the fear of having another brain haemorrhage and enduring even more damage.

However, it's probably easy for me to say that after having a SAH and it's only you that can ultimately make the decision that's right for you after weighing up the information given to you by the medics at your appointment next week.

Understandably, you're scared and probably feeling torn in all directions at the minute and I feel for you.

Anything that you want to ask, then please feel free.

Wishing you the very best. xx

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Hi Saffy, sorry to hear your news but hope the views you receive on this site will help you.

I had coiling done to secure an aneurysm that was discovered from a scan. I was not too well at the time having had my SAH and my recovery was not good, the scan highlighted the aneurysm and the coiling was done via an entry into my groin and routed to my brain.

I must admit I had no knowledge of this procedure at the time because I was suffering from Hydrocephalus and it affected my concious state considerably, besides obviously being sedated for the procedure.

However having it done has given me the confidence to know that currently I am free from aneurysms due to the procedure and subsequent check up scan.

I have to go for a follow up scan after six months but would not hesitate to have further coiling if necessary. The coiling as opposed to the problems caused by my having another SAH would be no question. I lost six weeks of my life due to my illness but luckily I came out the other side.

I hope you are able to make the right decision for you, I do not know how I would have reacted in your position knowing I had an aneurysm. For me the decision was taken for me due to my condition.

You are only 63 and obviously have a loving family who care deeply about you.

Knowing what I know now since my SAH I would have coiling done again.

I hope you are able to make the right decision for you, good luck next week.

Best wishes,

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Saffy,

I can sympathise with you with the predicament you are faced with.

It will be a worrying time for you, discovering that you have an aneurysm, but the fact that it has been discovered before it has had the possible chance of rupturing is, I believe, a fortunate thing, although it probably doesn’t feel this way to you at the present time.

Many of us on here only discovered we had aneurysms after they had ruptured which obviously can be very serious. I too was faced with a similar dilemma – having to decide whether to have an aneurysm re-coiled. I remember how distraught I was about having to make that decision. It is not an easy decision that you are having to make, but you are going to see the experts next week, so I would suggest that you make a list beforehand of all your concerns and queries, to take with you, no matter how many that might be, and hopefully when you have the answers to them, the decision should hopefully become a little easier. Also, it’s a good idea to take a family member with you, it always helps for remembering things!

I do myself have another un-ruptured aneurysm, (4mm) so I may have to make the same decision in the future. Although I was very hesitant and worried about making the decision last time, I have had a haemorrhage and can honestly say that now, having so much more knowledge than I did then, I would not hesitate to have my second aneurysm coiled if it was deemed necessary by my consultant. That of course would be my choice and I am not faced with this at the moment like you are. I do wish you well with whatever decision you make – there are many of us on here who have experienced coiling, so you must not feel you are alone on this one and can always raise any concerns with us.

All the best,

Sarah

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Hi Saffy

Really glad you found the site, and that you posted.

I had my SAH in OCt 2004, that was a ruptured aneurysm. A few months later I was found to have a 2nd unruptured aneurysm, and I was advised to get it coiled. I was lucky enough to get booked in for one month after the diagnosis - I found that month to be a very long one!

I found the 2nd coiling far les traumatic than the first, and I recovered from the op itself very quickly. It was a very different experience to the first coiling, which was done just after the SAH.

If I was found to have another aneurysm, I would choose to have it coiled, as I felt reassurred afterward. I was still scared about the surgery, but I think that' only natural with any op really.

Obviously you may feel differently to that. Good luck with your appointment next week, I hope it makes you feel more able to make a choice one way or the other.

Best wishes

Blondie xx

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Thank you so much for your quick replies.....its so good to know that there are others out there who understand what im feeling....i really dont think my hubby and daughter have a clue of the seriousness of this....comments like "it could be worse if they had said 50%risk" "stop thinking about it"...maybe its there way of trying to encourage me ...but its not helping....anyway thank you again for your help...Saffy xx

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Hi Saffy,

I had my first aneurysm coiled after it ruptured in June last year. They also found found an unruptured aneurysm which I had coiled in December last year. The coiling of the 2nd anerysm was so much easier as I didn't have the SAH to deal with as well. When I was told I had the second aneurysm and given the choice of having it coiled I was also told what the percentages were of it bursting. But I was also told that these percentages go up every year that you don't have it treated. I know it is a very hard decision to make but I wouldn't hesitate to have it done again as I now know the consequences of a burst aneurysm. I now have the peace of mind and can live my life to the fullest knowing that the chances of either of those 2 aneurysms rupturing are very minimal.

I wish you all the very best of luck.

Hugs :)

Debbie

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Hi Saffy,

Any time that you need to sound off to somebody or are worried, then please come back and talk to us. We can all pretty much understand what you're going through.

Husbands and family can sometimes do the Ostrich thing and bury their heads in the sand when faced with this sort of situation and think that if you don't talk about things, then it will all miraculously go away and life will return to normal! I think that a few of us here, have experienced that, even after having a brain haemorrhage, but that's also down to lack of information from the medics as well and may be not wanting to face up to the situation or perhaps they don't want to worry you with their own fears about your health and the future.

Keep talking to your daughter and Husband and let them know how you're feeling, as you need to be able to discuss your situation with them. I often think that the psychological issues are probably worse to deal with, than any of the physical problems that I've encountered and you do need to be able to share your anxieties and fears, rather than keeping it all bottled up. xx

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Hi Saffy

I'm so sorry you've found yourself with this dilema and the anxiety must be just awful.

I agree with Karen, I would do what is needed to avoid having to go through another SAH and the recovery.

You do need support however. Maybe show your husband and daughter this site. Have them read through some of our stories and posts, especially members that have gone through what you're going through.

Good idea to write down your questions and get your husband and daughter to do the same with their questions/worries.

Take care.

Liz xx

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Hi Saffy

Not much for me to add everyone's said it all.....just wanted to say welcome....

I didnt have to make that choice, which I think is the best choice really then there's no dilema.....

As Karen has said if you have any worries or want to talk come back to the site there's loads of people here with different insight.

would be an idea to get your hubby to look at the sight too just a thought

take care

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Hi Saffy, and welcome to the site, I can appreciate the problem you have, and you have to make this decision on very little knowledge, and only you can make this decision for you, what i do know is recovery from sah can be a much longer process,than recovering from a coiling, My wife had an sah last march so nearly a year on now and she still has mobility,memory,cognative thought and hearing problems with an sah it's a whole new set of problems, it's a decision only the individual can make for theirselves for me with the knowledge i have i would have it coiled, but you must talk to your consultant and then make your own mind up, Best wishes Rod

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Hi Saffy

Welcome to the site I'm sure you will find lots of support here. Like a lot of members I had an SAH so never had the dilemma that you have. It must be really worrying for you but as some of the others have already said make a list of all your questions and concerns to take to your appointment then you should be able to make an informed decision.

Wishing you all the best and please let us know how you get on.

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Hi Saffy,

I agree with most of the others here.

I had my burst aneurysm coiled. But if another was found & I could have it coiled I would in a heartbeat. My recovery, like many others, has been a long slow process. I have since been diagnosed with post-concussion syndrome.

Like Liz D said, if you have any questions, write them down and get them answered by the neuro-consultant.

Good luck with everything.

Ern

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Thank you all so much.....i am probably going to say yes to coiling.....ive been looking around this site and its pretty scary having a 9mm bomb in my head as alot on here seem to range from 2mm -7mm....i know its just as bad what ever the size...but when you read of smaller ones rupturing its very scary.im just worried how long i,ll have to wait...since my first ct scan they sent for me back the next day for another ct scan with dye...2 weeks later mri scan ..this was end november...i ended up ringing the specalists secretary every other day for results as i had a letter in december telling me i had an enlarged blood vessel in my head...4 weeks ago i saw the specalist to find out about this aneurism....and to be told they needed to check measurments and speak to the ones who do the coiling....so over last 4 weeks have been nagging the secretary for results ..in the end went to my drs in an awful state and she rang the secretary up to find out she was in the process of writing to her and me with results..i then got letter 3 days later asking if i wanted the coiling or not ....or would i like to see mr roberts again to talk about it.....i rang her and asked for appointment....told her i wasnt willing to waits weeks ( i think sometimes we just wait and keep quiet )shock to get phone call last thursday for appointment next week....

Can i tell you a little of me...7 years ago i lost my son to cancer...i nursed him last 3 weeks of his life..here at home...i was with him when he died.....i thought that was it for awful things happening to my family ...now they have this..(must have been a badden in my last life ) so now since my poor son ..i tend to fight for my rights now...so i can see more calls to his secretary coming up....or i may go and sit outside her office lol....sorry im going on .....thank you for being here for people like me.....i wont say God bless as im abit off him at the moment saffy xx

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Saffy, I think that perhaps a lot of us wonder what we've done to deserve the deal in life that we've been given ..... I often used to say that "things can't get any worse" before I had the SAH ... however, I now know that they can and you just have to find the positives where and when you can ... I know personally, that it's not always that easy sometimes and I still tend to live for the day, rather than look too far forward ... :wink:

I'm really sorry to hear about the loss of your son and I can't even begin to imagine what that must have been like for you ....it's every parents worse nightmare and one that I can't even begin to contemplate.... but you sound like a good, loving Mum with a lot of strength and I'm sure that will help carry you through.

Good for you with your persistence with the medics! .... you shouldn't have to keep on at them, but I think that most of us here know that it's the only way to get things sorted and the ball rolling!

Hugs to you Saffy....xx

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Hey Saffy

Welcome to the site and to the family. I'm like most of the others here - I suffered an SAH so would say yes to coiling in a heartbeat - there is no way I would risk another rupture and the aftermath.

I said to my hubby that I must have been really bad in a previous life for this to happen to me - but its just one of natures many things that makes the human body so amazing and yet so dangerous to itself - think about it - we have an appendix (essentially a sac of poison that serves no purpose what so ever) and if it bursts it can kill us - talk about design faults (Toyota eat your heart out!!). Anyway, I digress lol - personally I would have the coiling but like Karen said, ultimately only you can decide.

Take care hun

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Hi.....well i go to-morrow evening to see the specialist.....feeling very nervous......but i dont think i can live with this thing in my head....so am prob going to ask for coiling....i find nights are bad...just lie there with all these thoughts going round and round....so will let you know how it goes.....saffy xxx

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Hi Saffy,

Wishing you the very best of luck tomorrow and yes, it's a lot to have on your mind.

Hope that you are able to reach a conclusion and find some peace of mind at your appointment with the Specialist tomorrow.

Let us know how you get on..... xx

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Hi Saffy

Hope the meeting goes well for you tomorrow.You should know once you speak with the person who will carry out the coiling whether you want him inside your head.

Good luck it must be your decision as you will have many more thoughtful nights to come.

Laanka

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Hi Saffy

All the best for tomorrow. I hope you are put at ease and are able to make your decision.

I had SAH with an aneurysm of a reasonable size 13mm x 8mm x 7mm - what was initially advised to me as a 1cm aneurysm, so possibly around the same size as yours.

Having been through the SAH with initial mis-diagnosis and having the op a week after the bleed (without having to make a decision) I, like others, would not hesitate to coil if another aneurysm was found and was viable for coiling.

However, you have to take the advice from the Neurosurgeon and weigh up the pro's and con's for you.

Good luck again

Kel x

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Hi.....Well been and going to have it coiled....he was very nice and explained everything...said that he felt it was the only choice i should make as theres a one in ten chance of a rupture...he also said the waiting list is short for this procedure at my hospital...april begining of may...so thats that....feel abit better as the descision is made..scared of course...so the ones of you who have had it ..what does it feel like in your head when its been done...how long are you in hospital...ect lol...do you have to take it easy once your home...please prepare me lol love saffy xx

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