Tipss blocked

[Neph]

Hi all I have Budd chiari syndrome, which I was diagnosed with almost 6 years go. They performed an emergency tipss procedure at that time. I went into hospital yesterday to have it widened/stretched. They performed the operation but couldn’t perform the procedure as they couldn’t pass anything through it. I had a ct scan after I was back from theatre and it confirmed that my stent was completely blocked, with a blood clot. The surgeon informed me the stent that is already in place can not be removed. He informed me that a senior meeting would now take place to discuss what the next move is for me. I asked what the options was and he said he didn’t know. So was wondering if any one else has experienced the same sort of thing and what happened to you?

[Jo3560]

Hi Neph

I also was diagnosed with Budd Chiari 12 years ago. I had a tipps which also got blocked a couple of times . Since the blockages I was put on aspirin aswell as Warfarin ( as a trial at the Royal Free ) and since taking both medications together my stent has not blocked again . I have to go in and have tipsagrams about 2 or 3 times a year where they dilate the stent as it keeps narrowing but not blocking . What medication are you on ? If you are not taking aspirin it might be worth speaking to your consultant about it . I hope you get answers quickly and wish you well. Pls keep us posted xx

[Neph in reply to Jo3560]

Hi jo, I’m on warfarin and have been since I was diagnosed. I didn’t think we could take aspirin as it can damage the liver along with nurofen and ibuprofen. How do they remove the blockage from your stent? How do they know when it’s narrowing? I also have regular ultrasound scans and mris with contrast, they always say the tipss is patent. I’m struggling to understand how the blockage was missed in my stent. Thanks for your reply. X

[Jo3560 in reply to Neph]

Hi Neph,

I’ve heard of a few people now with Budd Chiari who take both Warfarin and aspirin together . I have my INR checked every other week so am being monitored all the time. I also have MPD and am Jak 2 positive for which I take hydroxycarbomide daily . When I have scans they also say that the stent is patent but my stomach gets largely distended which in my case is a sign that the stent has narrowed thus requiring a tipsagram / dilation.

What hospital are you under ? I really would discuss with your consultant about taking aspirin in conjunction with Warfarin . Keep me posted xx

[Neph in reply to Jo3560]

Thanks jo, I am under the Queen Elizabeth Hospital Birmingham.