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Difficult decision


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Hi

I am writing on behalf of a friend whose partner has an untreated aneursym. I have recommended she join Behind the Gray but she has had difficulty registering just now.

My friend Sandra's partner has an untreated giant middle cerebral artery aneurysm. It was discovered due to his having tests/scans to investigate epilepsy. He is 47 years old.

The neurosurgery team considering the case has said that the risk of the aneursym bursting is 3-5% per annum and if this happened, there would be a high risk of permanent morbidity or mortality. The aneurysm is not suitable for coiling so clipping is the only possibility. However the surgeon estimates that the clipping operation risk is not insignificant - and the surgeon estimates that the possibility of either a major permanent stroke causing left sided hemiplegia or death is in the region of 20%.

Sandra and her partner see the consultant again in July and are having to think about whether he should go ahead with the operation. We were wondering if anyone has been in the same position or has any advice they could give about this. I hope Sandra will be registered soon on Behind the Gray herself so she can post directly.

With warm wishes

Anne

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Hi Anne,

If Sandra is experiencing difficulty in registering, then please always feel free to contact us via the homepage link, as we're always happy to help...:-D

I personally don't feel that I can give any advice, as to whether or not somebody should have an aneurysm treated .... as it's something that they have to personally weigh up themselves and whether they can live with the knowledge of having an aneurysm and as to their quality of life at the moment.

However, if and when I have to more treatment, then I would go ahead with it, as know that after having a sentinel bleed and the following SAH 4 years later, that I perhaps wouldn't be so lucky with my outcome with another bleed.....but also know that I couldn't live with having a ticking time bomb in my head either, as living with that knowledge, would probably be worse than the thought of it being treated and the risks involved.

Is the epilepsy linked any way to the aneurysm? xx

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Hi Anne

It's a very difficult decision to make, I too have a untreated middle cerebral artery aneurysm and I am waiting for the appointment hopefully next month for coiling.

It has been really hard to make a decision for me because there are more risks involved now and when speaking to my neurosurgeon and cardiologists last week it has not been good at all, that is one of the reasons I have been worrying a lot.

Your friend perhaps can read some of the posts here to make a decision but as Karen has said ultimately it is his decision and he really needs the support and understanding.

These past few weeks I have been in a turmoil, I can't win either way, there are risks involved not only with my brain now but also the heart, hence the cardiologist.

Take care and let us know how your friend is getting along.

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Hi Anne,

I had an aneurysm coiled but at the time was away with the fairies as I was also suffering from Hydrocephalus after my SAH. My wife decided to give permission on my behalf because the risk to me of another bleed was probable death if it had occurred. This sounds very dramatic but I am grateful that she did. I have just had my six month MRI to check my progress but can say that I am a lot calmer knowing that the only aneurysm that had not burst has been treated by coiling. If as a result of the MRI they come and say we have found another one I would not hesitate to have that coiled as well.

It has to be a decision they take after consideration of all the facts and after all the advice from their Consultants. I wish them well.

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Hi Karen, Myra, John

Thank you for your replies. Karen - I was trying to help Sandra register today (I never have much luck with these things!) but we did send you a message through the Home page link with Sandra'a email address so hopefully you will have received it and Sandra will get on herself.

Yes it is a very difficult decision. I think just hearing about other people's experiences on BTG will help Sandra and her partner during this time.

Thanks again

Anne x

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Hi I'm like Karen i don't think that you could advise anyone else what to do but they have to look at all thi info wiegh it all up and then make an imformed decision, me i could'nt live with that in my head with the bit of knowledge i have gained since merrill had her sah, but good luck to them and i'm sure the decision they make will be the right one for them, Best wishes Rod

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Hi Anne

I can't advise on the actual Anuerysm or the site of it but my anuerysm was clipped and the odds I got given were 70/30 with 30% being risk of stroke/death but mine wasn't a giant and I had already had a bleed.

I agree with the others it is a difficult decision to make maybe when they see the Nuerosurgeon again they can make a list of their worries and concerns to mention.

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Hi Anne...like Janet...i cant advise on the actual aneurysm. My aneurysm ruptured, it was only 2mm but a severe bleed at the stem of my brain, basilar tip. I was told if i did not have it clipped it would bleed again at anytime and i would die. Mine was not suitable for coiling. I had to wait 12 days for my brain to reduce from severe swelling, before they could operate, in intensive care. I was given 10/20% odds of surviving. I had to say goodbye to all my family :( . After 7 hours of surgery i survived. :) :) It is an incredibly hard decision that only he can make, taking into account his Consultants advice.

It was a horrendous time for all my family....but just wanted to give you hope.....against the odds i did survive.

Edited by Tina
typo
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  • 4 weeks later...

Tina, Janet and team. Yes they were not good days for you either, with thanks to God you did.....even against the odds. The odds is my business so I know where you were. I was given 40% survival. So today we all sing to you.... "Simply the Best". Hoping you and your family all do well.

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  • 4 months later...

Hi

I just wanted to let you know that Sandra's partner Rab has passed away. His aneurysm burst and although he was quickly admitted to the hospital and taken on to the specialist hospital, he did not recover and passed away the following day.

When I wrote on the site on behalf of Sandra a few months ago, she was very grateful and really appreciated all your replies and kind words.

Anne

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So sorry to hear this very sad news. I remember being in hospital after Richards aneurism burst being told that if I didn't sign the consent form he would definately die and if I did he would probably die anyway. Thankfully, he did pull through but with many problems but I am so thankful to the hospital for saving his life. Sadly, some people don't make it and my heart goes out to the families. Sending love to your friend through what is surely a difficult time.

Zoe.

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Hi Anne sorry to hear the sad news of your friends partner, I just read your original post on this subject and it occured to me that if they had said there is an 80% chance this op will go without problems instead of a 20% chance of things going wrong it might make people come to a different decision. Best wishes Rod

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