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Hi Dhiraj-wedge pressure at time of biopsy would be useful and if no portal hypertension then reassuring. Defibrotide has been used by haematologists for a long time but as others have commented, evidence is woeful. It does seem safe and well tolerated, and in the overall cost of a BMT is small beans!
Thanks Dominik
This mans aneurysm has grown so I am not sure we can offer anticoagulation. It really is quite n image-with some intrahepatic vessels seeing to eminate from it.I thought an update would be useful re this patient
TIPS went ahead with control of ascites, and following initiation of avapritinib, he is back at work and no ascites etc.
So based on the experience of one(!) we have been referred another…thank you both-clearly this is a niche group of patients.
I am happy to any database and I am hoping to get someone on board who can do the hard miles!
I will feed back your experience-I think the push will be towards TIPS -and I can then feed back the outcomesthe problem with transplant is that she “only” has abdominal distension and probable gut oedema. She has no ascites etc-and well preserved liver function.
re frequent recurrence-I can only imagine that when we dilate, the IVC “un-twists” a bit, and after dilatation it gradually returns back to predilatation state.the stenosis is between the tips and the right atrium-it is a maximum of 2cm. Any stent will then end up with the free end in the atrium, plus could also impinge on the TIPS stent. I have an inherent worry about metal stents in benign disease anyway tho there are short large diameter stents available. PLus, she is relatively young, and I am also concerned about complicating the transplant issue with an embedded IVC stent in say 5 years time….
Its not easy!(not sure if there is a way we can share some of the images-the NHS firewall is relatively robust, unlike our politicians!
