Portal vein thrombosis

[EHPH]

My son was diagnosed with portal vein thrombosis causing portal hypertension in February. After an endoscopy for banding the surgeon came out and told us he has extra hepatic portal hypertension.

Anyone know what the extra hepatic means?

[Widemoon]

Not sure sorry, wouldn't want to say something wrong - perhaps it's one way of saying that the portal hypertension is affecting things elsewhere. Did you not ask the surgeon what it meant?

[EHPH in reply to Widemoon]

Was abit of a shock to hear him say that it’s symptom management only. Was hoping to see a doctor on the ward while he was recovering but didn’t see one until we were discharged.

Still waiting to go back and see his consultant. So will get the answers then

Thanks for getting back to me.

[Lois-Cldf Partner]

Medical questions are best to be answered by the liver teams and I can send you some details of how to contact your team. In the UK the hospital have 'helpline' services and emails for medical questions. If you are not in the UK it would be better to speak to your liver team directly.

UK families can join CLDF here: childliverdisease.org/cldf-...

If you are not from the UK you can download our information resources here:

childliverdisease.org/liver...