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Original poster

anyone out there had the dreaded wait of a brain scan result?

28 replies

7up · 16/10/2006 20:49

waiting for my 2year old sons mri brain scan result.he had the scan a week ago in london to confirm his diagnosis of Cranial Diabetes Indispidus and to find the cause,which is damage to the pituarity gland.

the wait is awful!

OP posts:

nulnulcat · 16/10/2006 21:23

hi 7up sorry lost your email address again! are things no better then?

nulnulcat · 16/10/2006 21:24

know how bad it is we had to have a eeg to confirm the epilepsy and the week we waited it was awful

Dottydot · 16/10/2006 21:28

Hi 7up - it's not the same because if it was my child I'd be going bonkers, but I'm waiting for the result of my MRI brain scan. It was done on Friday at 4pm and I was just sitting here wondering how long I should leave it until I start phoning the consultant's secretary!

I know there's a lump behind my left eye so the scan was to try to establish what it is - benign, malignant and also whether it can be removed without damaging the eye. I'm assuming no news is good news (assuming they'd move pretty quickly if it was something horrible).

good luck and I hope you don't have to wait for too long. I was told it would take 2 - 3 weeks before the report went to my consultant, which seems outrageously long. Were you given an idea of how long it would be?

Thinking of you - like I said, if it was my 2 year old I'd be going loopy...

Anchovy · 16/10/2006 21:29

I had it once for myself - doctors thought I may have had a stroke - it was just awful. I can't imagine how much worse it is for a child - best wishes to you and your family.

nulnulcat · 16/10/2006 23:14

hi email me at [email protected] and let me know what has been happening speak soon

edam · 16/10/2006 23:19

I also had a brain scan and waiting was not fun. Must be a thousand times worse if it's for your child. (My mother was very distressed, now I think about it.)

When I finally saw the surgeon though, he was really helpful, explained everything in great detail and showed me exactly what he could see on the image. Hope your ds's consultant is equally helpful.

mummylin2495 · 16/10/2006 23:39

dottydot i do hope you will eventually get good news.all the best i will keep my fingers crossed for you

7up hoping that you hear soon and that the results are good for your child

Original poster

7up · 17/10/2006 09:27

dotty dot,

hope you ok with your waiting too,atleast im not alone.they told me it can take at least 2 weeks as they have to have a conference to discuss the images then type a report and get it to your local consultant. ive been told to ring friday if not heard anything as it would be 2and a half weeks by then.

nulnulcat il email today.x

OP posts:

Dottydot · 17/10/2006 10:00

It's so effing frustrating though isn't it? I can't get past the logic of just being able to have a look at it when it's done and get on with doing something about it! And I work in the NHS - should know better..!

Clarinet60 · 19/10/2006 22:22

If it's any consolation, we were told that ds's first MRI would take a couple of weeks to be read, but because they found the tumour, they came to tell us while he was still coming round from the general that same day.
So maybe no news is good news.

dottydot, could you describe your eye symptoms? Because I've been able to feel something behind my eye for a while now.

hatwoman · 19/10/2006 22:32

I've had 2 scans and waiting is horrible. fwiw I think the conference thing is the main reason it takes a while - the people who are experts at reading scans are not the same as teh people who are experts in neurology or those who are experts in eyes (in my case) or a load of other things that need considering - all the relevant experts need to see it in order for any conclusions to be drawn. Also the scan might not show very clear cut results. when results are clear cut (happened to a friend of mine) and they need to, they can move very fast indeed. I hope you get results soon.

amynnixmum · 19/10/2006 22:37

I'm going to ask for an mri when I see my consultant tomorrow so not at the waiting for results part yet but its still hard. Good luck everyone.

Dottydot · 20/10/2006 16:31

hi Droile - I've had no real eye symptoms at all - it started last November when I had a headache which caused some paralysis in my right arm and mouth. Ended up in hospital for 4 days. They were wondering about a brain tumour/epilepsy. I had a CT scan which was clear and an MRI scan which showed the lump - but not in my brain, just behind my left eye. So probably the lump caused an atypical migraine which caused the paralysis. So that's good news really. Quite amazing that this all started a year ago next week and they're only just starting to sort it out - I had to wait for 6 months for the first MRI scan (only 4 weeks for the second once they'd found the lump). How's your ds, Droile - I try to keep up with your posts but haven't seen anything for a while.

7up - no news yet?

Amynnixmum - let us know how you got on today - hope you got an MRI booked in.

Dottydot · 20/10/2006 16:31

Oh - so forgot to say - can't feel the lump at all, but my eyesight detoriated quite badly in that eye at the time of the weird headache.

amynnixmum · 20/10/2006 17:07

Hi dottydot

The consultant was pleased with my progress and seemed reluctant to discuss MS at this point. He said the majority of poeple he sees with optic neuritis never have it or other MS symptoms again. However because of the numbness and tingling in my left arm and hand he is referring me on to a neurologist who will then decide whether or not to do an MRI. So more waiting

I'm going to talk to my parents tonight as they are going to ask how it went and I can't lie to them. I think I'm dreading worrying them more than anything else at the moment. I'm cooking them a roast dinner but I feel sick with nerves at the moment so don't know how much I'll eat.

Good luck everyone else who's waiting for scans/results etc

Dottydot · 20/10/2006 17:11

Hi - sorry you're going to have to wait longer. I know what you mean about telling parents. When my neurologist phoned me to tell me about the lump, my Mum (who I'm close to and lives over the road) was on holiday, so I didn't text her. When she got back and came round to tell me about the holiday I let her talk about it first and then told her - but felt really bad because it really brought her down from her holiday high. But if I hadn't have told her I'd have been in real trouble!

They'll want to know and it'll be good to talk it out - I've only really talked to my Mum, dp and a good friend (and here of course) and it's really good to be able to go over it - makes it a bit less scary. Good luck!

amynnixmum · 20/10/2006 17:17

Thanks dottydot

The problem is that in the last 2 years my parents have had to cope with my mums breastcancer, my dads atrial fibrillation, my sisters battle with her old company about sexual discrimination and my sons sn which emerged when he started school and ended up being excluded 3 times in as many months at just 4 years old. After all this shit things have just started getting to the point where its all going well and now I have to dump this on their shoulders. I'd like to protect them from it especially as at the moment we are only talking about a 30% chance but they wouldn't want me to do that.

Dottydot · 20/10/2006 17:22

Sorry you've all had so much on your plates - but you know if it was your children you'd want to know - they'll be sadder/crosser if you tell them later, even if (fingers crossed) it isn't MS.

Clarinet60 · 20/10/2006 22:39

Hi Dottydot, ds is still having seizures but his tumour is stable, ie, hasn't grown on the last 2 scans. Thanks for the info on your lump.

hatwoman · 20/10/2006 22:50

aminyxmum - sorry to hear you're waiting for this news. I was dx with MS in 1999. I have been told that MS that starts off with ON and numbness (like mine) is quite often the milder kind. I have only had 2 or 3 episodes since 1999 and have had about 2 days off work for MS-related things in nearly 7 years. I'm currently running about 20 miles a week and am probably fitter than I've ever been - so even if they do start talking about ms you don't need to panic. If there's anything I can do or if you'd like to ask anything feel free to cat me.

hatwoman · 20/10/2006 22:51

mis-spelt your name! sorry

CristinaTheAstonishing · 20/10/2006 22:56

DS is having an MRI and CT scan next week (on his 7th birthday, but we didn't feel we could refuse the date, esp since it took only a couple of weeks of waiting). It's with a view for a cochlear implant, I hope we get the results soon.

I hope you have reassuring results, 7up and Dottydot.

amynnixmum · 21/10/2006 09:53

Thanks hatwomen thats really reassuring. Telling my parents wasn't as bad as I thought it would be but i'm glad its done I'm feeling quite positive this morning and determind to get a handle on my stress levels so I am going to go to yoga.

Have you had any news yet 7up or dottydot?

amynnixmum · 24/10/2006 09:44

Any news yet 7up or dottydot?

Dottydot · 27/10/2006 12:23

Just posting to have a grumble that it's been 2 weeks since my MRI scan and I phoned the consultant's secretary this morning to see if he's had the report and the scan still hasn't been reported on yet.

I'm taking it that this is good - if they'd found something horrible they would have reported it asap (???!), but it's so frustrating. I really wanted to have some kind of clue by today (I'd got a 2 week wait in my mind as being OK!) of what the lump is and what's going to happen.

The secretary wasn't particularly helpful and didn't think it could be speeded up - gave no indication of when it might be reported on, so I'll have to wait. Might phone again at the end of next week.

Ho hum. Any progress 7up?

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