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Aneurysm that has grown


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Hello my name is Dawn. I used to be a member on here about 10 years when I was diagnosed with a 7.3mm aneurysm. Nothing changed over 10 years until my last scan 6 weeks ago when I have been told it has grown slightly and they are going to call me into clinic to discuss options of whether to operate or not. I feel like my whole life has been turned upside down again. I had gotten used to the fact that it was there and never did I think it would grow. Has anyone had any similar experiences.

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Hi Dawn, sorry to hear your news,

 

It must have come as quite a shock after such a long time, you are bound to be worried but the good thing is they have been able to catch it before it gets to a stage where it could rupture, I had 2 aneurysms  one ruptured and the other was found when they went in to coil the ruptured one, they coiled them both at the same time.

 

There are members here who have had to have further surgery and I'm sure they will come along and share their experiences with you, hopefully putting your mind at rest.

 

In the meantime try not to stress to much, easier said than done I know but trust the medics who are looking after you, they wouldn't be doing this if they didn't think it was necessary, have that discussion with them and see what your options are.

 

Hope all goes well when you go to consultation, let us know how you get on.

 

Love

Michelle xx 

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Hi Michelle, thank you for your kind words. It has been a big shock. My youngest daughter, who is 17 doesn't want me to go ahead with an operation. She's more worried than I am. She keeps saying what if it ruptures when they operate? She's so upset about it. It's so hard to think about what is the right decision. Yes you're right I need to see what the consultant has to say. Been told it won't be until January though. I'll keep you posted. x

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I'm sorry to hear you are in this situation and how worrying it is for you and your daughter.  Hopefully after your appointment, the options will become a little clearer for you to consider and make any decisions based on their judgement. I was wondering if  this is an untreated aneurysm you have and whether your daughter has only known about it since this recent news and therefore is having to take a lot of information on board in a relatively short space of time - plus the uncertainty that goes with it. (my youngest son is 17 now)

 

In 2015 I was in a similar situation in waiting for an appointment to discuss an aneurysm that had grown slightly and what, if any, treatment was needed.  My approx 8mm aneurysm had ruptured in Nov 2008.   I'm not sure to this day how me, or my family, got through that particular time.

 

In brief, I'd had my MRI on 10th Aug, the same day as my sister had a scan which revealed bowel cancer. I got a phone call on Fri 9th October asking me to to go in and discuss my results on the Monday - that Friday my husband was having major heart surgery across the city and hadn't even been woken up after his operation when I had my appointment to discuss the aneurysm which was when I was told it had grown. 

 

Due to my circumstances they agreed for me to have a further scan in 6 months' time. After that scan I was given the options  to either have an angiogram to see if it needed a stent and more coils put in, or be scanned again in a years' time to see if it had changed any further.    Needless to say I chose the 2nd option.  Following my scan in April of this year, I received a letter saying "stable appearances - scan in 12 months". So I'm a little confused to say the least.

 

I'd suggest you go to your appointment armed with any questions you have and maybe take another adult with you and preferably even ask them to put whatever has been discussed in writing to you - and tell them about your daughter's concerns - not that I thought to do that with my own 3 children's concerns.

 

Best wishes,

Sarah.

 

 

 

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Dawn,

 

When I had to have a shunt put in (Not the same but my hubby was worried) he was afraid for me xx 

 

He rang Surgeons, male nurse and said I am thinking of not going ahead as he was scared for me.  Luckily I remember nothing of this.

 

The Surgeon rang hubby back and said "If it was my wife I'd have it done" so hubs went ahead with it ..Good of him lol xx 

 

Seriously it was like a light coming on and I am so glad Surgeon said this to my husband as I have another chance xxx 

 

You will worry but it isn't like when you first went to hospital blue lighted.  You have something that they want to make sure will not grow again.

 

Be Brave and  I promise I wont sing a song when you come out and tell us what happened (Oh I fib also) xx Good luck xxxx and tell Daughter to be brave for you xxxx  My Daughter squeezed my arm and said "welcome back Mum" and we both blubbered  xxxx 

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Thank you for your kind words and support. I can't begin to think how it must have felt for you all having ruptured and treated aneurysms. It must have been terrifying, but you've all come through it. Mine has been left untreated for just over 10 years now. It's been monitored with regular scans. Both my daughter's have known about it since it was first diagnosed.

 

My eldest who is 19 years doesn't talk about it, so I don't really know what she thinks. My 17 year old is the worrier. I will take on board all of the advice you have all given and ask her if she wants to come and then she can be there to listen and ask questions herself. Hopefully my friend Karen whom I've not seen for about a year will be able to come with me too. If shes free I know she will. She was with me through the early years to hold my hand and help guide me through.

 

 

On 16/12/2017 at 19:01, kempse said:

I'm sorry to hear you are in this situation and how worrying it is for you and your daughter.  Hopefully after your appointment, the options will become a little clearer for you to consider and make any decisions based on their judgement. I was wondering if  this is an untreated aneurysm you have and whether your daughter has only known about it since this recent news and therefore is having to take a lot of information on board in a relatively short space of time - plus the uncertainty that goes with it. (my youngest son is 17 now)

 

In 2015 I was in a similar situation in waiting for an appointment to discuss an aneurysm that had grown slightly and what, if any, treatment was needed.  My approx 8mm aneurysm had ruptured in Nov 2008.   I'm not sure to this day how me, or my family, got through that particular time.

 

In brief, I'd had my MRI on 10th Aug, the same day as my sister had a scan which revealed bowel cancer. I got a phone call on Fri 9th October asking me to to go in and discuss my results on the Monday - that Friday my husband was having major heart surgery across the city and hadn't even been woken up after his operation when I had my appointment to discuss the aneurysm which was when I was told it had grown. 

 

Due to my circumstances they agreed for me to have a further scan in 6 months' time. After that scan I was given the options  to either have an angiogram to see if it needed a stent and more coils put in, or be scanned again in a years' time to see if it had changed any further.    Needless to say I chose the 2nd option.  Following my scan in April of this year, I received a letter saying "stable appearances - scan in 12 months". So I'm a little confused to say the least.

 

I'd suggest you go to your appointment armed with any questions you have and maybe take another adult with you and preferably even ask them to put whatever has been discussed in writing to you - and tell them about your daughter's concerns - not that I thought to do that with my own 3 children's concerns.

 

Best wishes,

Sarah.

 

 

 

 

 

 

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  • 6 months later...

Hello everyone.

 

I took the decision to have my aneurysm coiled. I went in for the procedure on 16th May. However it did not go to plan. The surgeon ruptured it  before he had  chance to coil it.  Hence I had a bleed and stroke and they had to remove 2 clots, I think performing a craniotomy. I spent 3.5 weeks in hospital and have now  been home for 6 days.

 

My head is very fuzzy all the time and the tiredness is awful. I have been told that I've go to have another op in about 6 months to replace  the part of skull that was removed. I've got quite a big dent in the side of my head, it disappears overnight, but is back once I get up.

 

I am absolutely petrified about having further surgery. Has anyone  had any similar experiences? I just want to be  normal again and get on with living my life. How long is the fuzziness likely to stay for and will I ever feel not tired again. Thank you for reading this

 

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Hey Dawn

 

So sorry that things didn't go as well as they should have done.  I can understand your fear over this, although I haven't experienced it.  As usual, the advice is to make sure you rest and drink plenty of fluid.

 

Sending you hugs xx

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Had mine coiled so I am no help at all, sorry you had a rough time of it.

 

My head played me up for a while, hope they can sort it out soon xx 

 

Good Luck and Hope you feel better soon xxxxxxx

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