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Getting My Son's MRI Results
What is my next step?

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#1 Miss 50s

Posted 16 November 2012 - 07:53 PM

I hope this is okay posting this in this section. Background - My DS has always had very shaky, uncoordinated arms and has his fists closed a lot of the time. I've always felt like something wasn't right with him so when he was younger we srated seeing a physio who thought we should see a paed as she thought here was something that needed to be investigated further. We saw the paed twice and he thought he might have Erb's Palsy but wasn't 100% sure so he referred us to a paed neurologist. We saw him and he sort of made me feel like I was exaggerating. He said he thought DS has Motot Dyspraxia and said that we should come back in a few months so he could reassess. He also said if I wanted I could get him put on the MRI waiting list since it was about 5-6 months long and by the time we saw him again we could cancel it if need be. Anyway there ended up being a cancellation a couple of weeks later  and the hospital called us first so DS had the MRI done at the end of September when he was 6 1/2 months old.  
I called the hospital about a week later to check if they had scanned his head and neck (just because the physio asked me) and they mentioned the results had to be typed up but should be with the neurologist the following week. I didn't hear anything from the neurologist the following week so I called and left a message asking how I would get the results. Day after day I rang and he never contacted me back. Finally I ended up calling the hospital who told me they couldn't give me the results but they could give them to my GP. My GP sent a letter to the neurologist asking for a copy but still nothing. Finally one day I called and his receptionist told me he was on leave for a coupld of weeks. I asked her to send the results to my GP which she did (I think she was as frustrated as I was by this stage). So I saw my GP and there was a note that his frontal white matter was narrow (I can't remember the exact wording) and MY GP wasn't sure how that related to the symptoms we are seeing in DS. So I was back to square one again and I called the neurologist and left another message for when he came back from leave which was a couple of days ago and I still haven't heard!
I just want to know what it all means and I don't have another appt with him until January. Does anyone know what I can do?? I don't understand why he's not contacted me.

Sorry for the essay sad.gif

#2 Laborious Nicety

Posted 16 November 2012 - 08:29 PM

IME if the condition is stable and benign, they won't contact you as it doesn't sound like it is necessarily causing his issues or if there is any treatment.

Yes I know it sucks and is incredibly frustrating to be on the receiving end of it but either he has reviewed it, it's on his non-urgent list or it has not even been reviewed as it is waiting as non-urgent.

I hope he does write to you and/or your GP but I wouldn'tbe holding my breath.

#3 Miss 50s

Posted 16 November 2012 - 09:38 PM

Thanks for the reply. That's really annoying and frustrating because of course I did what I shouldn't have done and googled and came up with all sorts of possible conditions. I understand he must be extremely busy but I'm a worried mum and I sort of think I have a right to know what they found.

#4 Laborious Nicety

Posted 16 November 2012 - 09:47 PM

I totally agree.  It really is annoying and frustrating.  But it's also very common to wait like this.

I hope someone does get the results for you ASAP!

#5 Helen-Alice

Posted 16 November 2012 - 09:52 PM

Can you get the paed you first saw to look at the results and help you out?

#6 Catolyn

Posted 16 November 2012 - 10:21 PM

What Balzac said. You can request a copy of the images from the hospital but they won't give you the report. It doesn't sound like it's urgent so try to let that put your mind at ease. I know how frustrating it is though, both as a patient and someone who works in healthcare.

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