TIPS Procedure

[Livmar]

Hi wonderful community. My question is:

Has anyone had a TIPS procedure without having a gastric or esophageal bleed or without HE, ascites or any other of the many conditions associated with cirrhosis?

Currently have cirrhosis, enlarged spleen(14.5 cm) and grade 4 both esophageal and gastric varices. Just trying to get a gauge to see if anyone has had TIPS with no bleeds. I am thinking no one has had it but I would love to find out.

Many thanks!

[WayCas]

A prophylactic TIPS sounds like great idea. However, I have had bleeds and other problems but doctors have been reluctant to offer me TIPS. Like to hear others experiences. Thanks for your question.

[Livmar in reply to WayCas]

Hi, read your BIO and posts. You are an inspiration to others that fight against all variables with this beast of a disease. Wishing and praying for your continued health 🙏.

[WayCas in reply to Livmar]

Thank you for your kind words and prayers. Always trying to encourage anyone fighting this Beast. Wishing you God's Grace on your journey and challenges.

[JanetH67]

As background:

I’ve had a large & traumatic esophageal bleed (survived, obvs) and many smaller GI bleeds since 2017, with a ton of varices developing all over my abdominal region (GI tract, many paraesophageal varices, and varices snaking around the portal vein even). Also had a partial splenic embolization 2 yrs ago, as my spleen got up to 27cms.

Surgeons and physicians are very reluctant to do a TIPS procedure on many, even if you have severe portal hypertension, as it can rapidly enhance hepatic encephalopathy, and no one wants that to happen.

I wish you the very best, it’s tough some days.

[Livmar in reply to JanetH67]

Hi JanetH67, Thanks so much for your reply. May I ask if you know what grade were your varices before you had the bleed? Also, did you get the TIPS done ?

[JanetH67 in reply to Livmar]

Hi Livmar, in Canada we have the following varice grading:

Grade 1 – Small, straight esophageal varices

Grade 2 – Enlarged, tortuous esophageal varices occupying less than one third of the lumen

Grade 3 – Large, coil-shaped esophageal varices occupying more than one third of the lumen

I was grade 3 with torturous veins per my Drs report. Sounds fun. I didn’t even know I really had any problem until one night I was chatting on msger with someone, went to bathroom and never returned to the convo, lost nearly 6 pints of blood. It was and is an unpleasant memory, but the worst feeling was the blood pressure just flatlining which caused me to fall on the bathroom floor.

Still, despite that massive bleed and 6 years of subsequent GI bleeds, none of my Drs ever wanted to touch the TIPS procedure but they did remove half the spleen (and they realize my PH is very high which has caused the varices to develop all throughout my digestive system, but TIPS (at least at Toronto General, where the Liver Clinic is run by the great UK Dr Gideon Hirschfeld) is often used here as a last resort as there are so many beta blockers and banding and other procedures that do not have the potential complications (develop HE) and risk of décompensation that TIPS has associated with it.

[Livmar in reply to JanetH67]

Hi JanetH67, at least you are on beta blockers which help avoid a bleed by at least 50 % based on what I have read.

Precisely what happened to you is what I am afraid might happen to me.

GI Bleeds are the worse because they can be fatal. I think I would rather get HE than have a massive GI bleed which can be my last.

Wishing you all the best 🙏

[JanetH67 in reply to Livmar]

Yes dear, if my husband wasn’t home at the time, I would not be writing 😵‍💫 he was usually away with military on the weekends and this was one time he didn’t have to go, thankfully.

You need to definitely be on beta blockers if your PH is high, but yes, you need to get those varices eradicated I hate to say it, as they normally don’t “just go away” with hopes & prayers 🙄. Why is your physician not taking proactive measures? Demand it. My Dr here said she didn’t like to scope too much due to the 1/1000 potential for infection from scope abrasion. I told her after another dr saved my life, what about the potential for death if I don’t have someone near me at all times? So let’s get proactive shall we? Sometimes you have to force the issue with drs and advocate very hard for your health I’m sad to say. Here’s to living!!

[Livmar in reply to JanetH67]

Amen, to all your words. I want to live a long life. Anything and everything that can be done to achieve that I am 100% behind that! Glad to hear you are doing well. Bless you and continued health 🙏.

[Yodamatt1983]

Hi I’ve had one , 2019 no bleeds thankfully. There are risks such as HE this is actually due to it working too well! I would certainly consider it strongly as it’s a very good tool with having cirrhosis etc

[Livmar in reply to Yodamatt1983]

Hi, are you on xifaxan and lactulose ? Have you had HE since your TIPS?

Thanks!

[Yodamatt1983 in reply to Livmar]

Honest answer we don’t know if I had a mild HE episode in 2020. I did take riflaxamin temporarily. I’m not on it now not do I have HE symptoms, I’ve never taken either of those meds you speak of (uk based)

[Livmar in reply to Yodamatt1983]

Thanks for info. It really helps me. It’s good to hear you are doing well. Continued good health 🙏.

[shellrock]

I had a tips procedure two years ago and all is well, not bleeding anymore.

[Livmar in reply to shellrock]

Hi Shellrock, have you had any HE since TIPS? Are you on Xifaxan and lactulose ?

[shellrock in reply to Livmar]

No only drugs prescribed to me is amlodipine to lower my blood pressure

[BearWood2]

I had TIPS done after a large bleed in February when they were banding my 44th varacie. It’s been good for me, I haven’t had a bleed or an HE episode yet. I did get a small blood clot and they were able to shrink it with medication.

[Livmar in reply to BearWood2]

Hi Bearwood2, that is so great to hear! Are you on xifaxan and lactulose? Is that what is keeping your HE in check ?

[BearWood2 in reply to Livmar]

I’m on Lactulose and have xifaxan lined up through my doctors and the pharmacy if needed, as I’m on disability and it is expensive here in Canada.

I was given TIPS because they were not able to band anymore varacies, they had exhausted that form of treatment.

[Livmar in reply to BearWood2]

Yes, OMG after banding 44 varices! Thats why I am becoming convinced that TIPS is the answer. These varices are like weeds, they just keep grown and invading everything in your body. Like weeds, they need to be erradicated, cemented ab=nd then TIPS done to relieve the portal pressure. My variceses are too big to be bandedd so might as well get the TIPS before a bleed that could be horrible happens. Thanks so much for your input!

[Chez2706]

Hi, I had TIPSS in July 2021, but this done was following numerous oesophageal bleeds. I couldn't be banded due to a very narrow oesophagus, and the TIPSS was done as a rescue procedure after I had another bleed while I was under GA for the sixth attempt at banding. It saved my life, and I've had no further bleeds since, and no HE.

Have been really well since but there were some changes shown at my last US, and an adjustment of the TIPSS might be necessary. Just waiting on on further tests for that.

[Livmar in reply to Chez2706]

Hi Chez2706, those bleeds can be extremely dangerous, especially the gastric ones. It’s great to hear that you are doing much better. Yes, I have read that sometimes an adjustment is necessary for the stent but at least it’s controlled. Wishing you all the best and continued good health 🙏.

[Chez2706 in reply to Livmar]

Thanks Livar, and I hope all goes well with you and your health. ❤️

[KingsKidEveryDay]

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