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Original poster

Finally they are going to do a scan - but do we want it now?

62 replies

KatyMac · 12/07/2010 13:30

There is going to be a big meeting to decide whether DD has a scan or not

I no longer know if it's relevant/appropriate

I am so unsure about everything

DD is better emotionally and may be seeing better on occasions

I don't know what to do

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DandyDan · 12/07/2010 23:02

I agree. Have the scan to set your mind and your daughter's at rest that you have pursued this option which is now being made available to you. Keep it low-key. But this should bring some clarity to the confusion, hopefully. Having a scan did with us.

If the situation is psychological, then summer will hopefully bring more easing of the symptoms. I can't keep repeating what happened in my situation but we found my daughter's symptoms eased towards the end of the school day invariably.

Wishing you and your daughter well.

DBennett · 12/07/2010 23:06

I have two comments I think.

Firstly, it's extremely unlikely that something would disapear from a scan.
If there is nothing there, it's overwhelming likely there never was.

Secondly, there's some evidence that having the scan only has a tempoary effect on anxiousness.
For example, with hronic headache, patients who are scanned are happier at 6 months.
But not at 12, 18 or 24 months.

I'm afraid neither of those things will make your choice any easier.
And if I had anyhting to say that would I'd say it.

Galena · 13/07/2010 07:13

'they are having a big meeting to discuss if DD has the scan(s)'

In which case I would just watch and wait - they may well decide that there is still no reason for the scan, in which case it's their decision and you can push hard for one in the future if you feel it's important. They may decide that there IS need for one, in which case go with that decision and see what happens.

I guess I'm saying, leave the decision to them, without trying to influence the decision either way, and then, if you decide it was the wrong decision later, it was THEIR choice, not yours!

BudaisintheZONE · 13/07/2010 07:30

Well if it is offered then I would take it. Rule everything and anything out. It won't hurt her. It is not invasive surgery. And it may well put your minds at rest.

Am glad to hear she is improving a bit. Long may it continue.

Original poster
KatyMac · 13/07/2010 16:51

Not such a good day today

I don't know

OP posts:
BudaisintheZONE · 13/07/2010 21:34

Why are you hesitating now? Surely you want to rule as much as possible out of the picture?

bathbuns · 13/07/2010 22:20

I really would take it if offered, just to set your mind at rest. You can keep it very low key with your dd, eg 'we are just going to do a scan to do a check up to make sure that everything is improving' or 'it's just a general health check bearing in mind your recent sight problems.' Or something similar. I totally understand your doubts - I bet you have no idea what to think. But this will set your mind at rest.

Even if evidence shows, as DBennett writes, that people might feel reassured at 6 month, but not so much at 18 months, you might well get long term reassurance from it, especially if her sight is improving. It might put your mind at ease that you did everything for her. I don't know, that's for you to think about. But I'd want it if it were me. It's a scan, it won't physically hurt her and if she really is improving there's no real reason it has to impede that improvement if no one makes a big deal out of it.

Trust your instincts. And it would be interesting to know if your dd wants this too. Maybe she will have a strong opinion and you can go with what she is saying.

SomeWhereOverTheRainbow4 · 13/07/2010 22:45

Sorry Katymac I hadn't seen this thread. I think (If it was up to me) that I would definately go for the scan.

Even if she's a bit better, she's still not 'well' and even if there's nothing it really will put your mind at rest.

I hope things go ok, am thinking of you! xxx

Al1son · 14/07/2010 13:24

You are coming across as being completely in two minds about this.

I know that ultimately it will be your decision but there are other people involved who will have an opinion too.

I would accept your openminded status as a positive thing and go to the meeting ready to hear what others have to say.

You can express your concerns that a clear scan will be seen as proof that it was psychological at the meeting - medical staff will be well aware of the being an undesirable outcome and perhaps will put your mind at rest.

Your DD is old enough to have a big part in this decision. I guess she will be at the meeting so let her listen to what is said, give her some time to mull it all over and then listen to what she has to say.

My guess is that after the meeting and a chat with your DD you could find the decision a whole lot easier to make or perhaps it will be made for you.

Don't be pushed into making a decision at the meeting. Give youself and DD some thinking time if you need it.

Try not to take the weight of the whole world on your shoulders - at least not until you have to .

Original poster
KatyMac · 14/07/2010 13:40

No this meeting is one that neither DD nor I can attend

I do feel divided and confused and lost and alone

OP posts:
Al1son · 14/07/2010 20:00

I don't like the sound of that. Is there going to be anyone advocating for you and DD?

If not I suppose you could ask for a letter from you to be read out but that will only help if you've reached a conclusion about what you want.

What sort of scan is it? What I mean is if it's a CT she'll get quite a big dose of radiation whereas if it's an MRI I guess they'll just be wanting to make sure the cost is justified.

I can see why you would be feeling alone with this. You don't sound like you trust them to make the right decision for DD.

Original poster
KatyMac · 14/07/2010 20:29

Me neither

Well I have tried to get people into the meeting but it's difficult

It's tricky

The Psychologist has requested the scans as she feels I won't 'move on' without them

The ophthalmologist says no

The CAF manager says lets have a meeting without KatyMac & her DD

I feel the time for the scans was months ago when it first happened now she 'might' be recovering and the scans may not show anything & may be pointless or even counter productive

OP posts:
Al1son · 14/07/2010 22:14

I'm not sure that enabling you to move on is sufficient justification for doing any scans. That goes double if you feel that it may not show the cause anyway.

At least you know they can't do anything without your permission and DD's cooperation.

This is extra stress that neither of you needs.

Original poster
KatyMac · 15/07/2010 20:20

I have to be honest & say this is just something else to worry about and as you say we don't need that

Life is very tricky atm

OP posts:
ChippingIn · 16/07/2010 18:33

Katy - let them have their meeting, see what they have to say.

Frankly, unless the scan can do any harm to your DD I would let them go ahead, it wont hurt and it might help...

I wish there was something more I could say that would make this better for you. It's so stressful for you

Original poster
KatyMac · 16/07/2010 22:04

The psychologist says that she has requested the meeting as she wanted me to have the scan for DD that I wanted....do I still want it?

OP posts:
ChippingIn · 17/07/2010 07:59

Yes

It wont hurt to have it done - then you know what's what - otherwise you will keep wondering & they wont be very chuffed if you say 'No' now, then change your mind will they.

I don't understand why you are hesitating to be honest Katy? What am I missing??

Original poster
KatyMac · 17/07/2010 08:30

I really think the time for the scan was straightaway, I feel she is getting better now & the scan will show nothing as what ever it was has passed

So the scan will be clear & they will say look it was psychological all along when I know if it had happened even 12 weeks ago it would have shown 'something'

& I feel paranoid

OP posts:
misdee · 17/07/2010 08:33

have the scan.

if there are areas of damage/probloems etc, then it would still show up.

DandyDan · 17/07/2010 18:50

If there is nothing on the scan, that means the situation organically/physiologically is okay - not a bad thing. If it means they suggest that what remains is a psychological issue, that is not a bad thing either.

I'm not sure you can "know" an earlier scan would have shown something.

If there is nothing there now, that is a healthy situation to be proud of and rejoice in.

Do have the scan, even though you feel you should have had one straightaway. Don't turn down what they are offering. This will be peace of mind one way or the other, as to physiological evidence of something or not.

SomeWhereOverTheRainbow4 · 20/07/2010 10:23

Hi Katymac,

How are things? Hope you managed to have a nice weekend!

xxx

Original poster
KatyMac · 21/07/2010 21:50

Fabulous weekend - we had a big family party for my Brother's 40th birthday - he & his family came over from Sweden for it

Thanks for asking

I am panicking a bit about the meeting tomorrow

OP posts:
ProfessorLaytonIsMyLoveSlave · 21/07/2010 22:01

Take the scan if they offer it; sounds quite likely that they won't but if they do then someone in that meeting will have come up with persuasive reasons why they should.

dickyduckydido · 21/07/2010 22:11

Hi KatyMac

I have read some of your other threads and hope I can express what I'd like to say eloquently enough!

Disclaimer: I am not a medical professional but do have a biological background.

  1. If they offer the scan, I really don't think it matters why they are offering it i.e. for your closure or because they think it's medically necessary

  2. Without being alarmist...anything which would cause blindness - temporary or permanent would not just disappear from a scan. Therefore, anything physical would more than likely show up.

Hope all the replies here help your decision.

SomeWhereOverTheRainbow4 · 21/07/2010 23:07

Hi KatyMac,

So so pleased you had a good weekend, it makes such a difference to take your mind of things. Did your DD enjoy it too?

You're very welcome, and I will be thinking of you tomorrow. Please let us know what happens, fingers crossed for some answers.

xxxxx