MRL

[ssc123]

Hello all,

I was wondering if anyone had ever had an MRL to look at the lymphatic system in their stomach area?

It has been suggested that my younger daughter would benefit from this diagnostic test to understand where her lymphorrhea is coming from and then there may even be a potential to glue the leak.

I suppose it would be good to understand exactly what it involved and were the results worth it? This is a very new procedure in the uk but I understand that it’s been carried out in the US for a much longer period of time so it would also be great to hear from our American friends.

She has already had lymphoscintigraphy and I was a little disappointed with the results because it just confirmed she has lymphoedema and had no positive impact on her treatment or therapy but I am hoping that this may be different.

Best wishes

X

[Lynora]

Where are you being seen for treatment/assessment of her condition? Has she had fluoroscopy to tract the lymphatics? Does she have chyle reflux?

[ssc123 in reply to Lynora]

Hi Lynora,

Thanks for your reply. She is being seen at St. George’s in London. I understand they have recently received funding for this new diagnostic test and have so far only carried out a handful of times and once successfully glued the leakage. Hence, the reason for my post. She has not had fluoroscopy and this was not mentioned during her appointment. Would this also achieve the same results as an MRL and is it less invasive? I’m not quite sure what chyle reflux is? She has lymphorhea which leaks from somewhere in her main body cavity (they suspect from around her stomach) and exits the body most likely via her vagina. This is mostly controlled using a mct diet but she is still struggling with what they suspect is blood stained lymphorhea. She is still very young so it would be great to try to stop this before puberty.

Best wishes

X

[Lynora in reply to ssc123]

I have sent you a PM.