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Big decision - coiling or not


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Hi, I have just been for follow up with consultant. My 1st one after SAH in June last year and he has told me that out of the 3 anni's that I have left - 2 are of no concern because of the position of them and the other 1 they will coil if that is what I want. He has given me all the statistics and risks of either having the coiling done or not and I have to make a decision. I know that there are others on here who have been in this position and would love to hear of your experience and how you coped with it all.

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Hi Jan

It is a difficult decision to make. I haven't been there as I had both my anni's coiled at the same time, but I guess it's a case of weighing up the pros and cons of the situation. Is the likelihood of the anni's bursting greater than the likelihood of something going wrong during the op - that sort of thing.

We can only support you in whatever decision you decide to make, but personally I would weigh up the situation and go for the best option. I know that already having a SAH makes it harder as you know what the outcome could be if they were to burst and that's a scary thought - but all procedures carry a degree of risk and its those risks you have to decide with.

We'll be here no matter what you decide but if you want to know what I'd do personally - I'd have the op - there's no way on earth I'd want to go through another bleed - but again I'd factor in the odds of either way.

Sorry this is a bit convoluted but it really is a personal decision.

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Hi Jan,

Not an enviable descision to have to make. I'm not quite at that point yet, although I could possibly be later this year and I am already getting anxious at the thought of being in the same position as you. So I am not sure what to say about coping or deciding as I know it's not an easy position to be in. Without having the actual descision around me, I tell myself I would opt for coiling but if and when the time comes I know I will be in a state trying to weigh it all up. I have been through coiling twice now so I suppose I would somehow cope with a third op if needs be.

Sorry not to be of much help, but it is so much an individual descision and not that simple to make but I do wish you all the best.

Take care,

Sarah

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thanks for the reply sami - He said if it bled then it's a 50/50 chance of surviving whereas the op is 3 in a 1000 of having complications like a stroke. I know the odds are in favour of the op but it's still scary to have to make the decision. The one thing I'm most worried about is putting my hubby and daughters thru any more trauma. I'm really lucky to have come thru the SAH as well as I have and although he has said that I will only be in for a few days at the most it would be interesting to hear if it has been the case for others.

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Hi Jan

Thats the thing that would sway me to the coiling - not wanting to put my hubby and daughter through the horror of it happening again and the aftermath. Personally, with those odds, I would go for the coiling - but lilke I said (and I know it sounds like a cop out) it's a decision only you can make.

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Sorry Jan, only just seen your question. The first coiling was from the rupture, the second one was discovered after a check up, when they discovered blood was still entering the aneursym. They knew, although I didn't at the time, that they had not filled it up completely as I had severe vasospasm at the first op, and they had not wanted to put too many coils in, for fear of them coming out and causing me to have a stroke. I have since found out that there is still a small amount of blood entering it and it has a wide neck. My other annie will be check by MRI in August and I have been told it will be discussed then. Oh the joys!

(So I didn't think I had much choice than to have more coils put in)

Sarah

PS. I was in and out very quickly the second time. Operated on the Wednesday, out Friday!

Edited by kempse
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Hi Jan,

I agree and can only echo what has already been said by Sami and Sarah .... I have a neck left on my aneurysm, so I wouldn't be surprised if I need further coiling in the future. I've had a sentinel bleed and then this SAH in 2005 and I don't think that I could go through this all again and would worry that I would have even more physical deficits. If the medics think that it needs coiling at a future date, then I would personally have it done. It's a hard one Jan and I wish you the very best of luck in coming to a decision that's good for you. xx

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thanks for the quick replies - now that I've had a few hours to think about it and spoken to my family I am pretty sure I am going to opt for surgery. The consultant did give me 2 months to make the decision but I think I will be phoning him before then as don't think I could have it hanging over my head for that long.

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Jan,

I'm sorry to hear you have such a decision to make. I can't imagine how that must make you feel. Such a big thing to hve on your mind. I've always been the type to mull things over for ages. Whatever you decide to do, we will all be here wishing you well. It does sound like your mind is made up already and I can understand why you'd want to speed it through. Please let us know when your final decision is made. We are behind you all the way.

Sally xxx

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Hi Jan

Yes it's a tricky decision. I'm in the same position as I have another small aneurysm. Last year I was told it was too small for them to operate on it but this year when I had my MRI, I was told that although it was no bigger, they now had smaller coils and so would be able to operate on it. Apparently they give you odds which are personal to what your circumstances are and mine are 1 in 200 chance per year of it bursting and if I had the op, a 7-10% of it resulting in death or stroke. The risk is high as it is a very small aneurysm which is apparently harder to coil and it's also in a tricky place.

I've decided not to do anything for now and just to have it monitored and I'll have another scan in 2 years time.

I think in your case, the odds seem much more favourable. so I can see how you are more inclined to consider having the op. It was obvious that my consultant could only present the fact/statistics to me and would not advise me what to do. However I got the feeling that he was happy with my decision to leave it. Do you get a feeling from your consultant as to what would be best for you to do?

Warm wishes

Anne

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Hi Jan,

I had to make a decision on the 3rd anni 3 months after 2 were coiled after SAH. It was the hardest decision of my life at the time. It was a 3mm anni & wasn't coiled initially as they had to order in small enough coils to be able to fix it.

The best advice I had was to consider how much I was worried about it (Very much after going through SAH already!) For me, the worry was all I could think about even though there were risks from having the op. It also helped that I asked the consultant if he would risk the op, he said he would.....

If you want to PM please do...

The good news is, I woke up in HDU and asked to go home the next morning (and was allowed to) the op was a success and there was none of the trauma or side effects of coiling a bleeding an anni. It still amazes me that I had a brain op with no further side effects and was well enough to leave so soon after. I am sure you will be absolutely fine too.

Best wishes, Michelle x

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Jan, very big decision. I think I would want the doc to just tell me what we had to do! I'm glad you've got family to discuss with and lots of people here who have been through it. I haven't had any coiling or clipping myself but I can imagine how hard your situation is right now.

Sandi K.

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Hi Jan, sounds like your decision has been made well done! I'm with Sandi on this one I'd want to be told what to do!

Am so glad for this site full of shared experiences no matter what it is thankfully there is always someone who can relate.

Jan I wish and hope all the best for you. Maggie x

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Jan I really fell for you. I was in the same situation albeit briefly at y review n Augst. They told em they suspected a mirror anni on the left posterior artery & theywanted to coil it duirng elective surgery. i was devestated initially but after thinking about what they had said I would have gone for it. They said as my right eye was affected by the initial anni they didn't want to risk leaving the left one for the same thing to happen as then I would be unable to see! It wasn't really an option & they were keen to get me in to do it as a preventative measure. However this proved not to be the case when they examined th angio again & nothing wsa found on the left side (they'd seen a thickened area which was a return on a lblood vessel)so nothing more was needed.

The surgery would have been done & i would ahve only stayed in for 3 days maximum & as an elective procedure the risks were much lower.

In all honesty it terrified me the thought of surgery again but the thought of another SAH was more scary so I would have gone with it.

Hope that helps in some way???

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thanks - all your comments have helped me to come to my decision. I'll probably change my mind 10 times a day until I've signed on the dotted line but I know that getting it done is the right decision for me and my family. Love and thanks to you all x

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Hi just to let you know that I phoned the surgeon this morning and am on the list for the op so hopefully I won't have to wait too long. Hubby has said we are going on a holiday before the op so it will take my mind of the wait. Don't know where we will end up but as long as it's warm it will be lovely. Once again - thanks for all your comments x

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Hi Jan,

Pleased to hear you have got that phone call out of the way. That sounds like a thoughtful suggestion of hubby :smile1:- Hope you don't have to wait too long as I know each day feels like a year when you are waiting for the day to arrive. Will no doubt speak again before then.

Take care,

Sarah

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Hi Jan,

I’m glad that you have made a decision that is comfortable for you and your family after weighing the pros and cons.

I decided to clip my unruptured aneurysm after my SAH because I never wanted to have another SAH. The neurosurgeon also told me that I’m “young and healthy” (yeah, at age 44 :-D) and he didn’t want it to “rupture in the future.” I now had a better understanding of the clipping surgery. I figured that since I survived the first one, I was going to survive the second one – and I did! Yes, I was very scared / nervous prior to the surgery but now I don’t think much about my aneurysms.

Take care and best wishes for your upcoming coiling.

Grace

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  • 2 months later...

Finally got date for op - will be having it done on 31st May - am really nervous but staying positive. Am hoping to go abroad with the family on July 10th. Does anyone know the timescale before you can fly after elective coiling.

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Hi Jan!

Don't have any answers about flying post elective coiling. Just wanted to let you know I'll be keeping you in my thoughts for upcoming surgery. I know this was a huge decision for you - so staying positive for great outcomes and that you're able to fly and enjoy your visit!!!

Hugs to you,

Carolyn

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Jan I had a holiday booked 2 weeks after my dicharge from hospital & was told there was no reason why I couldn't go so I imagine after a coiling it should be much the same. One word of caution really that you might not feel able to go, I certainly didn't but then I was clipped. i'd also check your insurance policy to see if you can claim if you don't feel up to going.

I hope it all goes well for you & hope you are back with us to update as soon as you feel up to it xxx

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you can fly as soon as you feel fit ( so allmy doctors in the hospital told me i flew about 5 weeks after my coiling and it was fine

Donna

PS will be thinking of you on the 31st xxxx

http://www.brainandspine.org.uk/information/neurological_conditions/subarachnoid_haemorrhage/index.html

page 29 has info on flying

Edited by donnamarie
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