I need help, talking down, sensible talk please

[PanickedMum]

My DD had a juvenile brain tumour (low grade). It was a truly terrible time but 2 operations later she was ok, cured. She's grown up now, it's almost 20 years ago. She's just been referred back to neurology and an urgent MRI scan following a routine eye test. I'm literally sick with terror, I can't talk myself down. I can't believe it's back after so long but neither can I think of any other rational explanation why this is going to be nothing. I somehow need to find a way to support her through whatever is coming, but I'm heartsick, I just can't bear it for her or me. It's enough already what she went through, too much, it's just unbearable if there's more.

Thank for all of your kind thoughts. I'm trying to stay positive and succeeding at least part of the time.

sue I'm so sorry to hear that, it's very hard to do this once. X

A friend's dd got referred because they saw pressure on the optic nerve that could be a brain tumour at a routine eye check up. She was rushed in for an MRI-I think it was within 48 hours they were that worried.

All was clear.

Sending positive thoughts your way, OP.

Hope you've had as good a weekend as possible - I know the worry never goes away but hopefully you've been able to push it from the forefront of your mind. Every day that passes is a day closer to knowing what the situation is, rather than imagining what it might be. Imagination tends to lead us to all the negatives, whereas in reality there are lots of perfectly reasonable explanations for why doctors want to investigate things, and often it's a case of being cautious.

Thank you, I'm up and down. Sleeping very badly though, so tired today at work I felt physically sick. I don't do this sort of thing well, I know I'm prone to catastrophic thinking so I'm trying to work on that and keep remembering to do my mindfulness and techniques for managing anxiety.

Hope you're ok. Has your daughter had her scan yet?

Hello, yes it was Wednesday. We haven't heard anything yet, I'm very jumpy every time the phone rings.

Nothing helpful to add but I hope very much you have good news.

Thinking of you and hoping you get good news for dd very soon ]

Well finally after over a week hearing nothing DD chased them up. The neurologist said no evidence of tumour recurrence, however she has 'more fluid' on her brain than previously. At this stage she cannot give any further information about that as she isn't an expert and needs to discuss with the radiologist. So from bing relatively calm and beginning to think no news was good news, I'm now back on the ceiling, especially as DD is starting to get headaches and was violently sick yesterday after exercising.

Here's a virtual hand hold. You poor thing- waiting for a response, and now you've got one, having to wait some more.

You're not going to stop feeling panicky until you have some conclusive picture of things, but a few things strike me: first, no sign of recurrence of tumour is great news, second, presumably if more fluid were a really worrying sign, the neurologist would know more about it, and it wouldn't be a case of needing further discussion, thirdly, do you think your dd being sick and having a headache could be partly because of exercising in hot humid weather?

I know it's proper answers you want from the specialists but In the meantime try to focus on the positives and the fact that there really are various explanations

Thanks Babbitty, I'm trying. Not tumour is good. I don't know why the neurologist can't offer any more insight, maybe the fluid is something for a surgeon rather than a medical specialist. I'm sure we'll know soon now.

What a horrible time for you! So sorry you are going through this. Without trying to diagnose I wander if it's a growth occupying cyst? My daughter had had this suspected. It's common on kids that had a brain tumour. It's where fluid builds up in the space where tumour was? Or has she got a shunt that's perhaps failing? Try and focus on the positive it's not a Tumour - that's great news! Xxx

Vicki I've never heard of that. Her tumour was cystic so that's what I associate cysts with. She never had a shunt, although after her second surgery it was considered as she was in hospital for several weeks with symptoms of raised pressure. The surgeon wanted to avoid if possible as it would have locked her into the system as they always get blocked. He felt it would resolve over time, and it did for 19 years.

So after 2 and a half weeks of waiting and chasing DD has just had a call from neurosurgeon and they want her in today for a shunt tomorrow as it's too risky to wait.

I am so sorry to hear this :( you must be worried. I wander why it's needed after all this time. The good news I'm guessing is that they haven't found any growths... im thinking of you all - sending love xx

awww best of luck op x hope everything goes well

Just got back from the hospital. She's going to have another scan tomorrow so they can examine the flow of fluid, and then they will decide on how to treat. She will probably have the surgery in the afternoon and she's had to stay in hospital in case of sudden deterioration. They have confirmed no tumour regrowth so that's a massive relief.

You've really been through the mill with all the waiting, I feel for you, it's horrible just waiting for results and treatments,

Hang on to the fact there is no tumour regrowth. Your dd has been thoroughly investigated so you can put your anxiety about tumours in a box, mentally, lock it up and walk away.

You're bound to worry about the surgery but it'll be done soon and clearly the docs have identified the issue and can deal with it. An unpleasant experience for you both to go through but hopefully one you'll put behind you quickly and your dd will be able to get back to normal without the headaches and feeling ill

They've just said she is growing a cyst. Not sure yet if it's different terminology between doctors. They are trying to decide if an alternative method of treating would be better as if she has a shunt she will need 2. No one is being reassuring at the moment. It feels like it's very serious and complicated.

I feel for you and your daughter. It is really horrible waiting for surgery and doctors can often not be the best at patient contact skills! I have a shunt, although mine is in my spinal cord, not my brain. I find nurses are much better people to talk to than doctors for reassurance - I have a truly wonderful one who sorts out any problems (much better than the GP).
The Brain and Spine Foundation (brainandspine.org.uk) have some useful information, and they have a helpline you can ring where you can talk to a neuroscience nurse. Hope everything goes well for your daughter

thinking of you both i know its just awful when your dcs are in hospital or waiting - best of luck with everything x

Sending love. Stay strong x

Just to update. After several days of not knowing whether we were coming or going she had surgery yesterday and it went extremely well. She had hydrocephalus due to two blockages and they used endoscopic techniques to bypass them and restore the flow. The second procedure is so unusual and when done is virtually always in children that they had a paediatric neurosurgeon on the team to assist. They have been so wonderful and once again when the chips are down our utterly fantastic doctors and nurses have come through for her and saved her life.

Brilliant news- speedy healing for your daughter.