Discussions By Condition: Liver conditions

Idiopathic Portal Vein Thrombosis

Posted In: Liver conditions 7 Replies
  • Posted By: Heather66
  • February 28, 2007
  • 02:28 AM

Hello to whomever reads this. I recently was diagnosed with Acute Idiopathic Portal Vein Thrombosis, however, I feel there is more to it than this. Of the numerous doctor's that I have seen in the last two months, noone can seem to answer why I still have pain and how long before the uncomfortable, bloated, distended feeling I have in the upper abdomen will go away. I am at a crossroads now as to how to continue my treatment...continue with the Coumadin or consider surgery to remove the thrombosis. Although the intense pain symptons are no longer present, I consistently have a dull pain, with the feelings of constriction and pressure, especially when i sit. The radiologist informed me today that he doesn't feel that I am possessing intense enough symptons to warrant a surgery, but he doesn't have to live with the day-to-day aches and pains. And of course my spleen is markedly enlarged due to the clot. I haven't been able to wear a pair of jeans in 2 months because of the swelling of my spleen.

I know this doesn't give all my comings and goings since I began this journey, basically I am looking for someone to give me an idea of what will happen if I decide I do not want the surgery. Is reoccurence possible? What will happen to my spleen?

I'm just so confused and am really just looking for someone who may have this condition to discuss it with me....Thanks in advance.

Reply Flag this Discussion

7 Replies:

  • Heather: I am a fifty-three year old man, diagnosed with portal vein thrombosis about a year and a half ago. There has never been any underlying pathology found that would have caused this condition. I am still in constant pain, and all that has been recommended for me is coumidan, to prevent another clot, and Nadalol, a beta blocker to reduce the pressure in the blood vessels. Additionally I am taking pain killers constantly, to try lead a normal life and continue working. I am frustrated, as you are, by the lack of information on the condition, what to expect in the future, and some kind of prediction on the pain and how it will progress. I think that the condition is just rare enough that there is no information to be had. Early on in my illness, one of my local doctors characterized me as a walking time bomb, an unfortunate turn of phrase that put me in a near state of panic. He was predicting that I would burst a blood vessel and die of internal bleeding. It hasn't happened, and I've been fairly active, even going skiing on occasion. To counteract this unfortunate diagnosis (the time bomb remark) they sent me out to the Mayo Clinic in Minnesota. The specialists there found that both the portal vein and the mesenteric veins were clotted and in fact, destroyed. There is no vein there to clean out, just remaining scar tissue. I've read about various operations that have been done, and the risks don't seam to make the procedures worthwhile. The least would be ligation of the varices, but even that would have to be re-done every year or so, and to my mind, doesn't address the underlying problem - the blockage. Shunting around the clot, in my reading, would only cause problems - leaving the liver without adequate blood supply, and leaving the blood uncleaned by the liver, and full of normally accumulating body toxins. Additionally, the shunt might clot up over time. The final interview with the doctors at the Mayo clinic recommended continued blood thinner (coumidan), Beta Blocker (Nadalol), and pain killers as needed. I.e. nothing I wasn't already doing. Perhaps to counteract the "timebomb" diagnosis, I was told I could expect a normal longevity with this condition. I appreciated that, but I'm left with all the same questions, and a kind of daily rollercoaster of pain meds, crests and troughs of feeling bad and good. I've found that eating very small meals, more frequently, is by far a better way to go than eating large meals. The blood going to the digestive system after a large (or normal) meal, will have great difficulty getting back out because of the blocked portal vein, and the consequent swelling will cause more pain. So eat very light and often. I'm curious what operation you are referring to in your letter. Sincerely: Peter
    Anonymous 42789 Replies Flag this Response
  • Hello Peter! Thanks so very, very much for telling me your story in brief. I'll be honest, your continuing battle with the pain and discomfort is SO not what I wanted to hear. Sometimes I think my family doctor thinks I've lost my marbles, even though he is determined to go on this ride with me for the long haul. I just went to see him yesterday because now that I am six months into this, I'm extremely tired of this rollercoaster ride. As usual, not much more he can do for me, although we are now trying another pill that is suppose to help with stomach digestion to see how that works with the bloating and distended symptoms that I have reoccuring often. I don't expect much since the last "shot in the dark" that we tried didn't work either, in fact it made my symptons worse. That was a pill for the the pancreas. I'm off tomorrow for another MRI to check the status of the clot situation. Just to mention, I don't only have the PVT, but also Superior Messenteric Vein (SMV) and Splenic Vein (SV)thrombosis. After the MRI, I've been directed to head back to my GI doctor to see what he has to offer at this point. Since I first wrote, I've had an endoscopy and an endoscopic ultrasound (EUS), been to see a Hematology/Oncology Specialist and a Hepatolgy Specialist at one of our state's medical universities, and they all say the same thing.."Yep, she's got PVT and no anti-coagulation problems". But no solutions!!I'm not back to work yet...my job requires sitting, which seems to aggravate my symptoms after an extended timeframe...and of course there is the eating. Yes, I have already changed my eating patterns to what I call "just snacking"....full meals do me in.In regards to the surgery, there were 3 possibilities explained to me...after the fact. Shunting (or TIPS), injecting Urokinase through my aortic vein, and a "Roto-rooter" type through my liver to "suck" the clot out. My doctor and I have decided IF it gets to the point where surgery MAY help, we would try the Urokinase injection. However, I'm being told by the specialists that surgery is not medically necessary since at my age (40) I'm in otherwise good health and they expect that I should be able to "heal" myself overtime. But they aren't living with the pain and discomfort on a daily basis. And now you are telling me you are already a year longer into this than me and are still suffering. Dear God! I don't know whether to laugh or cry!I must admit, I just said to my doctor yesterday that I wish there was another PVT patient that I could talk with in regards to my situation, just to see if I'm progessing the way they did and what my outcome will be. However, it seems that I may be an isolated case around here. How ironic to find your reply this afternoon. Thanks so much for the input. Hope all is going well!!! Heather
    Heather66 1 Replies Flag this Response
  • Hi Heather, I know it has been a few years since you first posted this discussion but I am interested in your progress. I too have been diagnosed with chronic portal vein thrombosis at the age of 36. It had been there for some time as my body had made collateral veins to compensate for the 100% blockage. It was a weird set of circumstances that led up to the diagnosis, I was married in October 2011 and in the weeks leading up to my wedding, although I was watching my diet as any bride does I put on 5-7 kilos of fluid, the week before my wedding I was a bridesmaid in my sisters wedding and looking at the pictures I can see huge amounts of fluid build up, I just look swollen and puffy and several family members asked if I was pregnant, it was very upsetting to say the least. The week after I had lost some of the puffiness and could fit into my wedding dress, thank God. For our honeymoon we flew to Noosa, QLD, Australia. When I got there I experienced severe pain in my feet and legs due to fluid build up although the odema was that slight visually you would have just thought I was a bit over weight. I found it extremely painful to walk up just the slightest incline and was puffed out and exhausted after minimal exertion. I was concerned and went to the Dr who was confused asked me to wait a while and come back if no resolution (in hindsight very poor management as I could have DVT!!). 2 months later I started to develop severe pain in my upper right quadrant of my abdobmen. My (new) Dr thought gall stones and sent me for an ultra sound and it was there they found the clot, rushed me to hospital and performed a million tests to find out what was wrong. To this date, nearly a year later, they have no idea what is going on, why I have the problem and everytime a test is conducted we either get nothing where something is expected of something where nothing was expected. I had been taking Coudamin and was told only needed to be on it for 6 months, in August they thought it had partially broken up but then a 2nd scan in November showed that it was still 100% blocked and what they had been looking at was a collateral vein, apparently I am a maze of veins in my abdomen. I recently had my 2nd gastroscopy as I had started to develop more stomach pain reminiscent of the pain which revealed the clot in the first place and they found a lump in my stomach and esophegal varicies (which neither were expected). I now have to have an MRI to check the veins and arteries and the like and have been told to stop all blood thinners due to extreme risk of bleeding due to the varicies which could be dangerous because we still have no clue as to why I have a blood clot in the first place. I still suffer from severe fluid problems in my legs below the knees and my arms below the elbow. I suffer from joint pain on and off and abdominal, upper and lower, pain as if it is conjested in there. I take benefibre daily to keep myself regular and when I dont I get severe lower abdominal pain from 'constipation' symptoms that although I have movements it is still constipation. I have been diagnosed with IBS as an endoscopy revealed no cause for the pain (this is no real shock to me). My stomach is bloated constantly and I have put on weight due to the limiting affects on my physical activeness. Regularly I suffer from intense itchiness all over usually at night and this affects my sleeping. I am wondering did you suffer from any of these 'extra' symptoms also? I have said from day one that I feel like my liver is not doing the job its meant to be due to the blockage but the Dr's assure me that my liver is in perfect working order and there are no illnesses or diseases causing any issues there (outside of the clot) and assure me that the collateral veins are compensating for the the blockage but with the other symptoms I cannot help but consider that it is not doing the full job of cleansing my blood and a build up of toxins and maybe even bile is in my blood and am concerned about the long term affects this will have on me. I am currently seeing a Gastroenterologist and the Haematologist has no real further interest in me as I do not have any blood disorders, diseases, syndromes or causes for the clot. I feel alone in this because I know of no other with this condition except those on the internet and you are the first I have attempted to contact, I am hoping you get my message and can provide some feedback on your current status.
    Anonymous 42789 Replies
    • December 30, 2012
    • 07:03 AM
    • 0
    Flag this Response
  • Did you ever find any pain meds that help with your abdominal pain associated with PVT? My husband was recently diagnosed. He is on blood thinners, has been in the hospital twice, but the abdominal pain won't go away. The doctors don't seem to have any solutions for the pain. Thanks!
    gwenditlefsen 1 Replies
    • October 20, 2013
    • 06:45 PM
    • 0
    Flag this Response
  • Hi gwenditlefsen, no pain killers worked for my stomach pain unfortunately outside of morphine when I was in hospital. Although, I went to a naturopath who adv I had candida in my stomach and gave me these herbal tablets which I took for about 6 weeks and the pain completely went so maybe asking the Dr about that could assist or seeing a naturopath
    Anonymous 42789 Replies
    • November 1, 2013
    • 02:54 AM
    • 0
    Flag this Response
  • My story started back in June of 2013. I started itching all over. (Some days it was everywhere) This itching was so severe I was making myself bleed and bruise. I saw so many different specialists...it was so frustrating! Eventually, I went to the hospital because of stomach pain. They did an ultrasound and CT scan and I had 3 blood clots. One in my portal vein, two in my superior mesenteric vein. I was admitted and put on heparin and coumadin. Has anyone else itched like I did?
    Anonymous 1 Replies Flag this Response
  • My husband, aged 27, had sever abdominal pain 8 weeks ago. I took him to the ER where they found appendicitis and superior mesenteric venous thrombosis. They put him on heparin, took out his appendix and kept him for a few days. They released him on Coumadin. 10 days later we were back in the ER. CT scan showed the clot got worse. They put him on Lovenox. All was well for 4 weeks when he had severe pain again in the upper abdomen and under right rib cage. A CT scan showed new clots in his right and left portal veins. I am told he should not have made new clots while on Lovenox. He is negative for all genetic testing and every other test they ran. He is otherwise healthy. They say his organs look fine right now and they put him on Arixtra. After he was able to go without the IV pain killers, they sent us home. This is where we are with no answers and a lot of pain. Does anyone have any recommendations on a doctor that we should see?
    Anonymous 1 Replies
    • February 11, 2016
    • 00:14 AM
    • 0
    Flag this Response
Thanks! A moderator will review your post and it will be live within the next 24 hours.