Called back to consultant after DS brain MRI

[nearlymumof5]

hello, my DS aged 7 has been having nausea, sickness and headaches since November and through lots of pushing managed to get an MRI which was on Monday eve - we were told to expect results in 2 weeks. Today I received a phone call from the paediatric consultants secretary asking myself and hubby to go in tomorrow at noon. I’m terrified. Has anyone else got experience of this? What’s scared me most is that they have asked me to bring hubby. They have requested that we don’t bring DS. I don’t even know what I’m asking for on this thread, maybe someone that has been in a similar situation? Thanks x

No advice, Op, but I wish you all the best.

I wish you all the very very best too. Just bumping this so that someone more useful might see it.

I imagine they want to talk through any findings with you, or what to do next if there are no findings.
No way of knowing from that if they have seen anything of concern. I hope tomorrow goes well OP, of course you will be feeling anxious but try and do distracting things until then, make sure you eat something etc.

Good luck. I would suspect calling you early means they've found something on the scan, you won't know what until you speak to them. It could be a wide variety of things from something very straightforward to something very serious. I know its impossible but try not to overthink it and stress yourself out as it won't help

oh gosh how worrying for you all- all the best for tomorrow.

What a worrying time for you. Well done you for advocating for your son and getting him seen. I It could be a good idea to ask if you can record the meeting to listen again later. I hope they've got to the bottom of what's making him ill and that it's easily solved.

No real advice op but try to stay calm if possible. I would assume they have found something but it might not be serious, it could be anything. There are lots of possibilities not just the worst case scenario. I will be thinking of you and I wish you all the best tomorrow.

I can imagine that you are extremely anxious. Try not to catastrophise and stay off Google until you've heard what they've got to tell you. Even if it is something serious, it is amazing what doctors are able to do now. All the best to you and your DS.

I have had a few MRIs. Most recent one was vibrating sensation on looking down Dr suspected tethered spinal cord. They did find something but not what the Dr suspected. So it was an incidental finding. But not called in for the results.

So moral of story there is IF they found something it still might not be what you was expecting/ looking for. Mine was badish news but not terrible news. Nothing changes because of it. Good luck for tomorrow

No constructive advice or direct experience, OP, but I do have experience of waiting for an appointment after amniocentesis when there were potentially serious issues to discuss, and also supporting a child through years of surgery.

Waiting is always horrendous.

Having the right people fighting your corner, with the tools of the miracle of modern medicine at their fingertips, is a good starting point.

Thinking of you and fingers crossed.

Best wishes for tomorrow. I can only imagine how you feel. Can you do some relaxing things tonight or go out for a walk to help the time go quickly x

Good luck for tomorrow op. 🤞
no experience myself hopefully someone with some experience comes along soon.

I didn't want to read and run. I bet you are overcome with worry. My best wishes for you for tomorrow

Thank you, I hadn’t thought of recording the meeting, I’ll ask them first but I’m sure it will be ok?

Good luck OP. Very well done for getting him scanned. It takes elbows to get anything done at the moment. He is lucky to have you. 💐

Thank you so much everyone, I’m trying to keep calm, and my brain is busy bouncing from worst case scenario to something relatively minor. It would be useful if I could switch off. The unknown is terrifying but I do tend to catastrophise so I’m also trying to remind myself that my brain can easily go off on a tangent! I’ve got work in the morning so that will keep me busy until the appointment. I really do appreciate everyone’s comments and thoughts x

The waiting must be awful but whatever they tell you you’re better off knowing and coming up with a plan of how to get ds feeling better.
Make notes, ask questions, repeat them if you need to.

sending positive vibes and best wishes xxx

Good luck OP. Definitely record the meeting if you can, ask lots of questions. Stay off Google tonight

Well, there is no doubt that they have something to discuss with you. I just hope it's the less scary end of the spectrum of things they want to discuss with you, iyswim.

Amazing job, getting him seen btw. Whatever it is they want to talk to you about, you've been your child's best advocate and will continue to be.

How's your son?

Best wishes for tomorrow.

Good luck with your meeting tomorrow. I can only imagine how worried you must be. I hope it's all ok or something very minor. xx

It may also be that they've seen something they can't positively identify and need to do a different type of scan to find out if it's anything concerning. This just happened to me with an MRI.

How absolutely horrible for you. You must be on your knees. Hoping hard that it's either nothing or something really straightforward. 🤞🤞

Wishing you the best outcome for tomorrow. There are so many things the could be calling you in for, it's not necessarily something awful.

Will be thinking of you

I hope everything goes better than you are expecting tomorrow.

In my experience doctors are very happy for you to record and it's a very sensible thing to do. You'll be shocked how much you forget or misremember. And how you think they said something in a certain tone which made you worry but when you listen back the tone seems perfectly normal.
My mum had a heart op at 80 and she was terrified. But she played back the recoding several times as she got worked up and listening to the positive and confident consultant really calmed her nerves.
Good luck tomorrow.