I went to Mt Sinai for my yearly checkup and fibroscan. The scan improved once again, but not so dramatically.
I have been going for an ultrasound to screen for HCC every 6 months, but this time, my doctor said I should have an MRI once a year and an ultrasound once a year. There is lots of experience with SVR people and HCC rates following SVR and he felt this would provide better detection of any carcinoma.
The good news was that no cancer was detected. The bad news is that I have blockage in the right hepatic vein, probably from a thrombosis. I have no symptoms from this as the other veins are patent.
So back to regular doctor visits and now an MRV monday morning.
I'm sorry to hear of this hepatic vein blockage. I know nothing about this but it certainly sounds worrisome. Please keep us all posted - what it means to your health, what is done about it, etc., so we can learn with you. Sending my best wishes.
I read on your profile that you Treated many many times, so congrats on your stead-fastness, in completing your SVR!
Are they going to do something about the blockage in the right hepatic vein, or does the blood just "rechannel"? Forgive my medical ignorance, in advance~
I have to go for an MRV on Monday in order to provide more detail. The main worry is the reason for the clot to form. If it's due to restricted blood flow caused by fibrosis, I will have to go on an anticoagulant. The docs are talking about a filter as a possibility, since it it's a clot that breaks free, it can cause a pulmonary embolism.
Just when I thought I was done with liver problems! There are three hepatic veins and a blockage in one will not produce symptoms. If all three become blocked, it's fatal without a liver transplant. Two blocked will produce ascites and other signs of liver failure.
Well the MRI is by far the best test to have when checking for HCC and a CT scan with contrast is next. My Hepa though try's to avoid them anymore due to the radiation issue. He will use the US as an in between from the MRI. I would much rather have the MRI but it is a constant battle with my insurance as they don't like to pay for it...
I would ask Doctor D who by the way I have a lot of respect for if he really feels you are now at stage 2 something then why the HCC screening at all. I have heard of it being done at later stage 3 but never in stage 2...
Good luck on the blockage issue... I think of you often when I hear people wishing for their 12 weeks of Incivek to end, you must hold the record for doing that stuff for 48 weeks..... Yikes.
Thanks for the support. Dr D is just going by the Fibroscan. The gold standard is a biopsy, but I don't want any more of them. My Fibroscan steadily improves, so that is why he is optimistic. I might have had this for a long time. I haven't had a scan of any type for many years.
I am not sure if Medicare will pay for the MRV. I spent hours on the phone with them and they say they pay for any magnetic resonance test that is medically necessary, so we will see.
Even a biopsy can miss a section of the liver that is cirrhotic, since it only samples a small section. I feel great though, so I am trying to be optimistic.
Hi. I am so very sorry to hear about this turn of events.
If there is anything I can do to help let me know.
Medicare should pay as MRI can show the detailed anatomy of the liver and reveal the presence of hepatic vein thrombosis where ultrasound is better at seeing the complications that can arise with more serious thrombosis. Gallbladder wall thickening, ascites, patchy liver echo pattern, splenomegaly, hypertrophied caudate lobe.
As far as alternating MRI with ultrasound. That is what the procedure at my transplant center is. For many years I would have ultrasound then CT or MRI alternating. Until I was diagnosed with HCC. Since then it is multi-phased MRI with contrast at least every three months. So I think alternating once a year is a good idea, although as you said the rates of HCC after SVR and much lower than those with active hep C.
Let us know how you are doing. My hope is for a swift treatment and recovery for you.
Hang in there. I know you over come this setback.
Birth control pills caused it in some women during the late 60s. I don't think the newer ones used today can cause it, but I am not sure. I read lots of articles about it on the net, but none listed definitive causes.
The good news is that the portal veins are patent as is the left hepatic vein. No portal hypertension is visible in the scan, so I am puzzled about why the clot formed. I will know more when I get the results of the MRV and talk to the docs.
You are right. Your situation seems good as far as thrombosis is concerned. I hope they can get a handle on it while it is still mild.
Have they concluded this is Budd–Chiari syndrome?
* The cause cannot be found in about half of the patients
* Primary (75%): thrombosis of the hepatic vein
* Secondary (25%): compression of the hepatic vein by an outside structure (e.g. a tumor)
* Hepatic vein thrombosis is associated with the following in decreasing order of frequency:
a) Polycythemia vera
c) post partum state
d) use of oral contraceptive
e) paroxysmal nocturnal hemoglobinuria
f) Hepatocellular carcinoma
g) Lupus anticoagulant
* Infection such as tuberculosis
* Congenital venous webs
* Occasionally inferior vena caval stenosis
The hepatic veins comprise of three large veins which are the right hepatic vein, the middle hepatic vein and the left hepatic vein drain the hepatic parenchyma into the IVC. There are separate small veins draining the caudate lobe of the liver.
* Right hepatic vein
The right hepatic vein runs at the right hepatic fissure and drains segments V, VI, VII and VIII. The plane of the right hepatic vein separates the segments VI and VII (which are posterior to this plane) and segments VIII and V (which are located anterior to this plane).
It is a single dominant vein in 60 - 78% individuals. There may be early bifurcation (splitting into 2 parts), early trifurcation (splitting into 3 parts)or even multiple right hepatic veins entering the IVC (inferior vena cava). This may make it difficult to deduce segmental anatomy of the liver.
Here is a good diagram of typical liver venus architecture.
Hang in their buddy.
This is just a temporary bump in the road.
This is the definition I found at "UptoDate" a database of articles for physicans. I don't have a prescription but you can get access to the intro.
Etiology of the Budd-Chiari syndrome
..."Thus, the Budd-Chiari syndrome is due to occlusion or partial occlusion of one, two, or all three of the major hepatic veins (right, middle, and left) and/or occlusion or partial occlusion of the inferior vein cava (figure 1) . In addition, several small veins that enter the inferior vena cava directly from the posterior surface of the caudate lobe and occasionally from the right and left hepatic lobes may or may not be involved by the occlusive process."
There are 64 links to documents about Budd-Chiari syndrome here...
Here are some other links...
I am glad it is only one vein although that sounds frightening enough. Hoping for simple effective treatment.
I went for an MRV of the liver today. I asked the technician if he could see the blockage and he said no. I will have to wait for the radiologist to look at the pics and right a report before I have a definitive answer, but I am encouraged that the technician couldn't see anything.
The MRV is the definitive test for this syndrome. Ten year prognosis for one blocked vein is 95%. Given my age, my 10 year prognosis with no problems is less than that - LOL.
Good to see you are still going mostly strong and have a decent prognosis.
I had a surprise this year..... I was getting an EKG and the tech kept throwing away each EKG printout.
They ran a few, through em away, ran some more.....
the tech finally came back w/ 2 nurses.....and they ran a few , repositioned the leads and tried again, threw em away...
Finally I said; "Whats going on?"
The nurse said; "This says you're having a heart attack. Are you?"
I said I am now......... : )
It turned out that I had an irregular heart beat.
I was screening for a trial and I thought; well, that's then end of that. : (
Later on in the screening when I asked to see the prohibited list of herbs, drugs, etc, and I figured out that the tonic water I had been drinking for leg cramps (contains quinine) was similar enough to a prohibited quinilone drug (which caused heart arrhythia).
I quit the quinine/tonic water that day and have had numerous EKG's in the trial; all normal.
I wish yours was that easy.
Wishing you the best Eric, and all my old buddies....
I feel great, so I doubt this is anything serious. I will no for sure in a few days when the radiologist looks at the pictures and writes a report.
I am hoping that Medicare will pay for the MRV. The lab that took the pictures here in Sarasota says it won't, but Mt Sinai says it will. I did lots of searches on the web and found sites (not Medicare itself) that say it will pay for an MRV when a thrombosis of the hepatic veins is suspected.
Got the MRV result today. It shows a 7cm thrombosis in the middle hepatic vein. Left and right hepatic veins and all portal veins have normal flow. The middle vein is not completely obstructed and I have no symptoms.
Gosh, Eric-so sorry to read this. Have you decided on a course of treatment? After all you've gone through for liver health, then this comes out of left field. I'm wishing you (and the lovely Mrs) all good outcomes.
And if I'm reading correctly, Willy's in a trial? Never thought I'd see the day, lol! Hope all is going well for ya, Willy
What a surprise, so sorry to hear that you are having to deal with this. Thank you for sharing this information, it is educational for all of us. I will be watching to hear your progress as more information comes in. Best wishes.
I have made an appointment with a Dr at Tampa General. This practice is associated with the transplant center, so they are well versed in liver architecture.
Dr D says this is not serious now, but would become serious if it spreads to the other two hepatic veins. I am puzzled about why it happened, but I might never know that. The clot is stable in size for the 3 months between MRIs, so that's good news.
It's great to see some of my old friends still here helping people. I hope you are all well. Meanwhile, I am still enjoying life and planning to continue that for many more years.
I missed your question back some posts. They are going to send me to a hematologist to get treated for the clot. There are drugs to prevent clotting and some that bust clots. I don't know what they will do. Hopefully, I will see the hematologist next week and get some answers. The vein is not completely blocked and I have no symptoms.
In general, there is enough HCC in people that SVR to cause most docs to get more aggressive with ultrasound and MRI testing for HCC regardless of the stage, unless it is 1 or less.
Went to see a hepatologist at Tampa Hospital. He is associated with the transplant center there. He showed the pictures to a transplant surgeon and their opinion is to just watch it. They don't believe it will progress or cause me any symptoms.
I wish I didn't know about it, but at least I don't have to take a blood thinner.
Never caught this thread in September so it is nice to read now that after 6 months everything is back to normal. I assume that was with no medicine/blood thinners. I have always thought of you as an extremely fit person so was surprised at this thread. I am glad it is resolved.
By the way, Medicare denied payment for the MRV and the hospital tried to get me to pay $2,900 for it. I appealed and supplied them with letters from Dr D and policies from Aetna that does pay for Budd-Chiari syndrome.
I won the appeal and medicare paid the hospital $360 and the hospital accepted the payment. Go figure, they wanted me to pay 9 times that, but were happy to accept Medicare's payment.
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