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Nerve Sheath Tumour, follow up MRI and appointment.

3 replies

queenrollo · 05/09/2025 09:13

Wasn't sure what title to put so just going with what I already know.

Last year I was referred to physio for back/hip pain and some leg weakness. Vague symptoms but enough to be having an impact on daily life. We assumed arthritis or later life complication from being born with hip dysplasia.
I had an MRI which ruled out those things but did pick up an anomaly in my spine.
I was referred to Sheffield and a contrast MRI, and in the subsequent meeting with the Consultant I was told it's a nerve sheath tumour. On the cauda equine nerve, in the spinal column and right against the spinal cord.
He requested a full spine and brain MRI with contrast to see if it is a lone tumour or there are others (he mentioned fibromatosis but I have no other presenting symptoms). This would be reviewed by a Multi Disciplinary Team.
We had agreed the follow up appointment would be by phone, as it's a lot of travel for us.

Yesterday they called and said he wants a face to face appointment instead.
I am trying to stay calm and not read too much into this, but obviously some degree of worry is natural.
It's at the end of the month, so not too long to wait but I am a little anxious about the change from phone to face to face.

OP posts:
GentleSheep · 05/09/2025 13:24

Sorry to hear this OP - do you have any family or friends you can talk to in the meantime?

queenrollo · 05/09/2025 15:33

@GentleSheep yes, my husband is great and I have friends who know what is going on and I have told them.
I have found great support on mumsnet in the past so thought I would share here and it’s a good way to sort of get it out of my head so I stop dwelling on it.

OP posts:
GentleSheep · 05/09/2025 16:00

Yes it's understandable you would be worried, I guess the good news is that the cause of your problems has been discovered, hopefully with a way forward. I think waiting for these types of things is usually far worse than actually getting the news! Keep posting if it will help you. xx

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