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Any compex kidney stone experts on MN?

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Nocontactgrief Tue 30-Apr-19 12:03:13

I am hoping someone might be able to provide some advice/expertise.
My poor DS (sister) has a complex kidney stone, which is stuck in a sac coming away from her kidney.
She is in lots of pain, and has been on and off morphine for months, whilst trying to work.
The pain is sometimes excruitiating (as anyone who has had kidney stones knows!) and other time bearable.
She has been in hospital again after it got very painful and has had more scans and tests.
Her consultant is saying the sac that the stone is in, is on a thin tube that would be difficult to lazer or operate on. They are saying there is nothing they can do because surgery would risk infection, losing the kidney, scarring, etc.
They said they also found some cysts in her kidney.

They recommend watch and wait, with heavy painkilling medication as needed. They don't know why pain is coming and going.
This feels unsustainable in the long-term and my sister is getting down about needing morphine to manage and having so much time off work.

I know this is very specific and its likely no-one has much to say, but I have seen so much great knowledge and help on MN with obscure medical things, I thought it would be worth asking!
Thanks for any advice or knowledge you might have.

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