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Follow up... 9 months


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I went for my follow up with my consultant yesterday who did my op and have come out with so many mixed feelings/confusion!.

First of all he said that he had not had the report back from the radiologist from my MRI scan a month ago but from looking at the images he had he said it seems ok but as soon as he gets the report he will write to me and my GP but then started to talk about the possability of residue building up to which i thought he was talking about fluid building up around the coiling :confused:and then he was quick and strern enough to point out to listen what he was saying and that he meant that some cases need coils topping up etc (i felt like saying well stop talking in medical jargen!!) but they will have to wait for the report but just to go out and carry on as normal it can blow again but the risks are low as i have as much chance as being hit by a bus.............i thought thanks for that:lol: but i come out feeling rather confused and well pance really!!!! i know they have to tell you the good and bad but crikey!!

I thought was there any point to this follow up. Did anyone else feel like this after there first follow up??

Vicky xx

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Hey Vicky

I think he was referring to the coils "compacting" - its when they settle down over time and more may need to be added to ensure that the anni is still completely occluded. It's not always the case that this will happen though - they just have to make you aware of the fact. I remember my Neuro Consultant saying the same to me and I went into panic mode - but he explained that in some very rare cases the coils "settle" and leave a small gap where there is the possibility of blood leaking into it if the artery wall is still weak. By the time I had my two year scan they were satisfied that the coils weren't going to move and that the artery wall near the anni was as strong as the rest of the artery wall anywhere else.

It can be worrying at your stage in recovery but honestly, it does get better as the time goes on and the more scans you have through this time will literally put your mind at ease.

As always, this isn't a medical opinion - I'm just letting you know what my understanding of what he was saying is and what I was told personally. Check with your GP if you're still unsure as to what the Specialist has told you.

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Hi Vicky,

Sorry to hear you didn't feel reassured by your 1st follow up. I can totally understand you thinking he should explain more clearly and him thinking you should listen - not easy after a brain scare!!

Could you take someone with you to future appointments? I have found this helps (when friends/family are available to come with me). I think I only hear the bad bits but if someone is with me they remember the good bits that I have missed.

Take care

Michelle x

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Hi Vicky,

Crikey your doctor was not very reassuring, I don't think they realise how scary it is for us. I went for a follow up last year and the doctor said ' good news, the coils have only settled a little bit, so the stem is only small, and you will just have to be checked every year for five years'. I knew nothing about the coils settling and to me that was bad news! I went home really worried, when I had skipped in to see the consultant thinking I would be discharged :)

I now realise that the doctors are just being cautious, and that I really have not much to worry about.

Vivien

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Hi Vicky

Sorry to hear you weren't reassured by your consultant :shock:

Do you have a telephone number to call the hospital with any queries you may have?

Or speak to your GP who may be able to follow it up with the hospital on your behalf.

You could even email the Patient Advisory Liaison Service (PALS) at the hospital (you should be able to find the contact details if you search online) and ask them questions to raise with your consultant on you behalf.

Your consultant was out of order being so stern with you, and should be a little more empathetic with his patients! He does after all know the possible side-effects after surgery, at least he should do! Concentration being one of them, hence not being able to take in what he was saying to you...

I have taken someone with me when I go for my follow-ups, as they are there as back-up if I forget to mention something or if I miss something that was said to me. I made notes at my 1st follow-up but didn't during my 2nd and wish I had done, as I did forget some things.

I have been advised that there is literally no chance of a re-bleed. And ditto what Skippy has said about the compacting of the coils.

I hope you manage to get some answers soon to help put your mind at ease.

Take care

Kel x

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Awe am sorry your left feeling bewidered by your consultation and I hope you can get some reassurance,if the there is'nt a specialist nurse you can refer to go ask your own doctor Vickey and get proffesional reassurance. You should n't be left upset like this!

Hopefully you'll get some reassurance before the week end and are not left feeling like this.

The main thing is that your still on this planet! And hopefully will be for many years to come like the rest of us Vicky you just have to believe!

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Hi Vicky,

Sorry to hear you were left feeling this way after your initial follow up. It appears that not all doctors/consultants have a good bedside manner, all of the time. I think they sometimes forget that, although they might be dealing with these things on a daily basis, it is all new to us and we are the ones that have actually had the sah and, if like me probably had no knowledge regarding aneursyms/ sah prior to having one. Therefore it would be of great help and also reassuring if we were given information when leaving hospital and more so at the first appointment.

At my last appointment to see my consultant, he had not received the radiologists report either and I remember thinking wouldn't it have been a good idea to book me in after it had been received and analysed, and not before:roll:

I think your consultant will write to your doctor following your visit, so maybe you could go through it with your GP. I know mine did following my first meeting and it was whilst visiting my doctor and asking if there was anything else in the letter that I should know about, that I was told about another aneursym that I have - it was not quite how I would have expected to find that out:roll:. I'm not suggesting this would be so in your case, but I do think if you are not sure about any thing, then do as the others have suggested and make sure you get satisfactory answers to at least give you the reassurance you deserve.

Take care,

Sarah

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Vivienne, can I ask about the coils settling & leaving a small neck please? Why do they only check for 5 years? Does this mean if there isn't a further problem in 5 years, there won't ever be? I hope this question doesn't upset you and I'm sure you have asked it yourself. I am having a 3 year check in July and I worry that they'll say everything is fine (I hope they say everything is fine!!!! BUT I am also scared that if they discharge me and I grow a 4th or 5th etc anni, how will anyone know?

Sarah, I think if the doctors could live just for one day in our new heads they would be more understanding of our worries and how things are for us all even if we got off fairly lightly.

Michelle x

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Hi Michelle

I asked my Neuro consultant this question. I was discharged two years after my SAH and was told that everything was satisfactory now - the coils had settled as much as they were ever going to and the weakness in the artery wall had repaired 100%. From what I can gather, if the coils are going to settle it's within a certain time frame and after this it's highly unlikely that they'll move any more. Always worth asking the question at follow up appointments though.

I see it like a new house being built and the settlement time that follows when small cracks may appear in the walls - they're there but they're not big enough to cause any damage.

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Thank you for that info Sara. I have been told that as I have 3 annis, they are fairly sure that it is hereditary and there is a significant risk that I will develop more, hence the worry over being discharged completely.

Thank goodness for BTG as I find out more on here than I do from hospital - but then I ask questions on here that hadn't occurred to me before reading some of the posts, so the fault maybe lies with me....

Michelle x

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Thanks for all the replys guys makes you feel a lot better talking on here!! Lots of interesting comments and you seem to learn so much on here. I did take my mom with me as my husband couldn't get the time off work and even she thought he was quite abrupt but I suppose we are just another number to them. I don't feel too bad now apart from a few anxiety attacks and have to remember to breath and had a few of the zig zig streaks of light in my eyes again which lasts about 15 mins then goes I think it is some kind of aura thing as I have had eye tests and ct scans and all clear!!.

Hope you all ok

Vicky xx

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