Mumstown Chat

by **Haileysmum** » Mon Jan 09, 2017 4:52 pm

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I have posted about this on another thread but am wondering has anyone heard of this or know anyone with it?.

Hailey's MRI of her spine showed a small thoracic syrinx- which is a cyst in your spine which according to Dr. Google is either nothing to worry about or you will be crippled with pain for your whole life!. am finding it hard to get a hold of Hailey's consultant so just thought i would throw it out there is anyone has any info on condition please

by **allyj** » Mon Jan 09, 2017 9:24 pm

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No I haven't heard of it. What about your gp until such time as you get to speak to consultant. Presumably they would have a copy of haileys report? Dr. Google is dangerous, but I know as a mammy it's too tempting not to to Google.

by **Haileysmum** » Tue Jan 10, 2017 6:57 pm

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GP didn't really know about it- she knew as much as me about it, she said i need to get info from consultant.

by **Sabbi** » Wed Jan 11, 2017 11:25 am

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what baffles me is the way they tell you something new, then say it might be something important or not really important at all and then send you home with hardly any information for your imagination to run wild!!

its so annoying. if they would only speak to you properly when they give such news, it would save so much worry and confusion.

I hope its nothing bad for Hailey and I would second what allyj said, don't google....its bad for you!!!

by **Haileysmum** » Thu Jan 12, 2017 11:19 am

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Sabbi the consultant didn't even tell me this new info- it was in a letter that she sent to my GP that i asked for a copy of- its beyond frustrating at this stage

by **Haileysmum** » Sat Jan 28, 2017 3:10 pm

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Finally got a hold of consultant- unfortunately she said she doesn't know enough about Syrinx to answer any of my questions.She had a meeting with the radiology team and they have now referred her MRI results to a Neurologist to look over and then he/she will either contact us for an appointment or will be able to answer my questions....I'm hoping it isn't going to take months and months like everything else has

by **Sabbi** » Sun Jan 29, 2017 12:03 pm

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Can you call back the person you spoke with and tie her down to a timeline for more info? Its absolutely so frustrating for you - don't they have any compassion?

by **Haileysmum** » Mon Feb 13, 2017 6:46 pm

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Got a phone call from Hailey's consultant- the Neurosurgeon got back to her and said that he isn't concerned about Hailey's Syrinx, he said it doesn't need monitoring and we don't have to worry about it. I'm soooooo relieved as i was really worried about it. its seems mad that having a cyst in your spine is fine but that's what he said so phew

by **munchin** » Mon Feb 13, 2017 8:21 pm

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Ah glad to hear it Haileysmam

by **allyj** » Tue Feb 14, 2017 2:29 am

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Oh that is fantastic news, you must be so relieved,

very glad to hear that.

by **Haileysmum** » Thu Feb 16, 2017 5:32 pm

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Thanks Munchin & Allyj

such a big relief

by **Sabbi** » Fri Feb 17, 2017 6:05 pm

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That is so good to hear.

Why they had to terrify you for no good reason for so long is beyond me. But its good news at the end of the day!

That's great, so happy for you guys