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kempse

Having to make a decision almost 11 years after aneurysm rupture

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I am in the unenviable position of having to make a¬†decision about whether or not to have my aneurysm treated for the third time. Unfortunately,¬†decision making is not my forteūüė®

 

Background is that in November 2008 I had a subarachnoid haemorrhage caused by the rupture of an aneurysm situated at the apex of the basilar artery in the brain stem. This was coiled 11 days later and again a year later. Since then, I have had this aneurysm, which has a wide neck, plus another unruptured one, monitored annually. Yesterday I finally had a meeting with the consultant neuroradiologist following the MRI which I had 5 months ago and also had to chase it up twice.

 

What he suggested was to have more coils put in the base of the aneurysm where there is a gap and at the same time insert a flow diverter which, as the name suggests, diverts the blood away from the aneurysm eliminating risk of rupture which currently stands at a risk of 1% per year.

 

All this appears to be a sensible idea but to achieve this I would need to put myself through a procedure which fills me with fear.   I was also told there was a 5% chance of having a stroke during the procedure. Although I've turned this round to a 95% chance of not having a stroke it's not made my decision any easier. The other option is doing nothing now and continue being monitored on an annual basis which presumably is just delaying the decision. 

 

Anyway I came away from the meeting having agreed to an angiogram being arranged so he can get a more detailed picture of what he's working with.  He also said he would get a second opinion from some consultant in Birmingham before going ahead with any procedure because of it's complexity:unsure:. I have asked for another meeting with him after the angiogram before I try and make a final decision.

 

 Sarah

 

 

 

 

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Sarah I do feel for you having to make such a decision. You have lived with this uncertainty for many years now and now it seems it’s crunch time. 

 

The only advice I can give is to trust your neuro team. They have kept you safe so far and only have your best interests at heart. I have a patient who needs a procedure that has a 15% mortality rate which he constantly focuses on. I have suggested he focus on the 85% he will get through it.

 

Surgeons have to give odds so you are well informed and patients always fixate on the failure % not the success which in your case is so high. 

 

You survived the original event event that had a much higher risk of mortality so have trust. 

 

I hope your angio is  soon so you can get a full picture to enable the team to help you with your decision. 

 

Take good care

 

Clare xx

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Hi Sarah,

 

so sorry to hear about your situation what an awful position to be in x

the percentage chances sound very good to me,the angiogram and the second opinion are all positive in my eyes.

Obviously it is your decision but I think if it was me I would go ahead with surgery rather than live in fear every day xxxxx

hope you get lots of other opinions on here to make your decision a little easier xx

 

best of luck.

 

 

 

 

 

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Hi Sarah,

 

So sorry that you are in this position, I really don't know what to say.

 

I would certainly agree with what Claire said, your Neuro team have kept you safe for all these years, trust them, as Claire said they only have your best interests at heart, it must be such a difficult thing to have to deal with.

 

Sending you a huge hug lovely lady, whatever you decide we will all be here for you. 

Love 

Michelle xx 

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HI Sarah

 

See what the team have to say after the angiogram and try not to worry or feel you have to make a decision until then.  Agree with the fact that you can trust your Neuro team . them having kept you safe all these years.  Personally, having had one rupture and another not, I would have the surgery and risk that minimal percent rather than take the chance of having another one rupture.  

 

I have two anni's - they are close together and  they made the decision themselves during my life saving op to coil the other while they were there - so luckily I don't have to make this decision (although I haven't been scanned for over 11 years and do wonder whats happening up in my old grey matter).

 

Talk everything through with them after the angio and see how you feel about things then x

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Sarah you will make what you feel happy with xx

 

Sometimes we wish they would tell us a lie.  Mind you 95% is good odds, but only you can make decision.

 

I'd be scared if it was me to be Honest with you.  Your call and only you can decide but if you go ahead wishing you all the best.  

 

Good luck wish I was a fountain of knowledge as all on BTG helped me  when I first came on here singing my troubles and fears away.

 

Whatever feels right for you XX  Good luck again XXXXX

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Many thanks to everyone for taking the time to reply.  All good advice. I will try and do what Sami suggests and try not to worry until the angiogram is done. I think he mentioned November for this so not for a few weeks yet.

 

I was talking to my sister yesterday (she came with me to the appointment) and between us we feel that we came away with quite a few unanswered questions, so we have both started to write these down to ask next time we see the radiologist.   I took a list of questions to the meeting on Tuesday, but forgot to get the list out of my bag!

 

I’ve had great faith and admiration for my neuro team who have kept me safe for the past 11 years, what I liked was having the same two consultants from day one, then about 3 years ago one of them left to go to another hospital.  I have never met his replacement and this year I find out that the one who did both my previous coiling procedures no longer does these procedures, so this was the first time I had met his replacement.   I do still trust the team even though the two main players whom I knew so well are no longer part of that team.

 

I probably shouldn’t read things on the internet, but I have done and the first thing I read was that Flow diversion for basilar apex aneurysms has rarely been reported. The article was dated Dec 2018.

 

Anyway I haven’t got to make the decision just yet although I could well do without it hanging over me! 

Thanks again,

Sarah

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Sarah, bless you, sending lots of love & hugs xx

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Sarah, like you I have a ‚Äėneck‚Äô on my annie as they can‚Äôt fill entirely with coils as it at the dissecting¬†point of two arteries and another. My annual checks , scans typically say ‚Äėno significant change‚Äô . I suppose that would be my question, has the change been that significant that you now need surgery I And guess¬†the only way to get answer is to get¬†that angiogram over and done with ...(plenty of time to get the bikini area sorted at least ¬†ūüėā)¬†

 

sending you good vibes, I think you’ll know what’s right but you must trust new chap and if you don’t ask then ask for referral to someone else maybe for second opinion.

 

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That's definitely something I shall be asking Daffodil, as far as I'm aware there has only been a very slight change in all these years and that was reported from my scan 3 or 4 years ago.  This procedure that they are talking about now was mentioned back then and I decided not to have it done.  There has been no change since then, so quite why they are putting this stressful decision to me again,  I'm not sure. 

 

Thanks for the love and hugs Tina - much appreciatedūüėÄ

 

Sarah

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Sarah, it could be the changes in your neuro team that has precipitated that conclusion. Doctors often have differing opinions as what is the best treatment. Possibly the new team are being cautious.

As others have said, do not make any decision until  you have discussed the results of the angiogram with them. 

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Sarah, I so hope you are ok. I imagine you may have had your procedure. My 7 year old daughter had a giant aneurysm at the base of her vascular artery last December and they treated it successfully with coils and a diverted. Miraculously. She’s 10 months out from the procedure and so far so good. 
I hope all the best for you, please feel free to reach out direct if you want to talk about the diverter, or similar complex aneurysms. xo. 

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Hi Jessica, 

 

Firstly I am so pleased to hear your daughter is doing well after her procedure, but sorry that she and you had to go through all this with her being so young, it must have been a very worrying time. I wish her all the best.

 

As for me, I haven't had my proposed procedure, but coincidentally I was in the middle of reading your post when my husband handed me a letter which had just come through the letter box.¬† It was a letter from the hospital with a date for my angiogram which is 24th October at 8.30 amūüė®.¬† Immediately I saw it was the week after next my heart started beating extra fast! Despite having had a couple of angiograms in the past I still worry about the procedure,¬†I even worry about sneezing or coughing during the angiogram. Perhaps they'll give me a sedative!

 

Thanks for your offer to talk about diverters etc - I will bear this in mind.

 

Sarah

 

 

 

 

 

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Just to update, I have today survived the angiogram!  I got up at 5am to be at the hospital for 8 which had been changed from the original 8.30 as my procedure was due at 9am.  But when I eventually got down to the "angio" room at 10.15 I was told they hadn't had the results of the kidney function blood test. Apparently I should have had all the blood tests done at the pre-op assessment, but no-one took any blood. I don't think the radiologist was too impressed! So they did a finger Prick test and I must have passed as I was then wheeled into the room.

 

When I recently purchased some contact lenses so I could see my brain on the monitors above, I didn't factor in that technology has advanced since my last angios 10/11 years ago and there was only one large monitor which I couldn't see anyway, so it was a bit disappointing!

 

I was forewarned when the dye would suddenly heat up my head/neck, but at that point I was beginning to lose faith when he said "you will now feel heat on the left side of your head, I mean right side - sorry about that, I don't know my left from my right":yikes:  I also got the flashing lights which I didn't get last time.

 

It took about half an hour to complete and then the usual 4 hour bed rest.  The neuroradiologist said he would look at the pictures in more detail, but he did say that, although blood was still entering the aneurysm at the base, he didn't, on first inspection of the photos, think it would be worth putting me at risk with more surgery - that was music to my ears!  I just hope he doesn't change his mind when he's had time to take another look.

 

Apparently I can't drive for 7 days, I don't remember that last time round.  

 

Oh well, I'm a lot happier now than I was early this morning!

 

Sarah

 

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Well done Sarah, it’s an anxious time during that procedure. I recall the flashing lights but agree they didn’t mention driving when I had mine...mind you I couldn’t drive yet then anyway!

 

hope what he suggested stands and nothing further needed.

sleep well. 

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Glad you managed to get through the procedure Sarah, though it sounds very stressful. Hopefully the results will concur with what he has suggested, I am sure that will be a relief to you.

 

Keep us posted and in the meantime relax xx

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Sarah so pleased you got through it ok, well done you xx Hope nothing further needed and he doesn't  change his mind. Must be a new thing the not driving after. Take care, love & hugs xx

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Well done Sarah …

 

 

Subs

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Well done Sarah -you got through it. If he changes his mind you need to go through it thoroughly. Why did he have his original thoughts?, what changed his mind?, how complicated is it?, what are the risk factors now? and what are their percentages? and how reliable are they? etc etc.

 

Goodness your mind must have been in turmoil.  I think you can relax for the time being. I also think that if they are changing their minds then they aren't sure themselves and you don't want to be a guinea pig so I might shy away.  Only if they are definite would I go ahead with it, if the risks are as minimal as they can be.

 

Any operation has risk attached to it and 95% in favour is probably as good as it gets but no risk by not having it done might be better.  It's a tough one but make sure that they are sure before you agree to it.

 

I doff my cap to you young lady!  Once again well done!

 

Macca

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Many thanks for your posts everyone.  

 

Macca, I'm 100% with you on those points and will ask the questions if the need arises.

 

 I'm also trying to get used to the difference between the way in which this and my previous radiologist communicate with me in general.  One comment yesterday was that he was surprised I hadn't died when I had my SAH as the vasospasm was so bad. Plus he called me by my middle name on one occasion having used my first name at all other times. It would have impressed me more if he'd addressed me as Macca has above - 'young' lady:grin:

 

Anyway, assuming he doesn't change his mind, at least I know they will continue monitoring me annually and because I've just had this angiogram, he said my normal April MRI's would now be in October so a bit of breathing space at last.

 

Sarah 

 

 

 

 

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Thanks Sarah,

 

I think if there is anything urgent they'll get in touch quickly!  So as you say, a bit of breathing space for you now.  It takes the pressure off you and will allow more thinking and research time for you without the emotion playing a part. That can only be good!

 

Best wishes,

 

Macca

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Sarah,  So glad to hear you are doing well.  Nice job!  Best wishes and prayers.

 

Chris

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Phew Sarah such a relief for you,   now when you can drive I'll have a chocolate cake please xxxxx Young Lady 

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Sarah sorry hun late on this (I did wonder why I hadn't seen it, then notice your post was on 11th Sept we were on holiday) phew!! thought I was going ga-ga….

 

I hope things go ok and the music to your ears continues...

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On 25/10/2019 at 14:53, kempse said:

...Plus he called me by my middle name on one occasion having used my first name at all other times...

 

 

I remember as a kid going to the optician and the whole time he called me Amanda rather than Andrea. It definitely didn't fill me with much confidence in his eyesight!! :)

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