blood clot in portal and superior mesenteric veins

[Akabler]

i am a 32 year old female who was diagnosed with portal vein thrombosis and smv thrombosis in october 2007. i am trying to find anyone with similar diagnosis or experiences to discuss condition with. i have been told this is pretty rare and so far have been unable to find anyone out there on other message boards. feeling pretty much all alone any info is appreciated

[Mandyrose63]

I have Thrombosis of the Portal,Splenic and Messenteric veins. I was first diagnosed in 2012 when I was admitted to hospital with severe stomach pain etc. I was 48 at the time. I've been told by my specialists that my condition is very rare and I'm quite unique and there is nobody else in my hometown in Australia with my condition and I'm actually the case study at the hospital and every specialist is interested in my case. I didn't just have one blood clot but hundreds floating around. They originally thought I had pancreatic cancer also. But fortunately for me that wasn't the case. I've been told by many specialists they have never seen a case like mine,and with so many clots. Also my liver itself is quite healthy,and I had quite extensive screening for many cancers,auto immune diseases etc for several years trying to find the cause of my condition. None was found and the specialists have all said I'm a bit of a puzzle. I have to have regular liver function blood tests every 3 months and have been on Clexane 90ml daily ,a injectable blood thinner ever since my diagnosis. The hematologist at the hospital recommended that instead of Warfrin or Heparin as they weren't strong enough or suitable for the extent of my condition. I have since developed oesophagal varices,grad 1. These were found in 2017 following a regular gastroscopy that I have every few years. Anyway I don't know of anyone with my condition or quite as extensive as I have. Whenever I see my specialist,she always calls me Miss Famous,lol and tells me how everyone is so interested in my case. I have been admitted to hospital numerous times over the years with my condition,as I still have flare ups with stomach pain,and because of my history I am always investigated blood tests,MRI's etc and kept in hospital for at least 4 days. Also every since my diagnosis way back in 2012 I have always had low blood pressure every since. Usually about 105/70 which I believe is unusual for most people in their mid 50's

[specialmom]

Thanks for sharing your story!  On the plus side of being an unusual and interesting case, is that doctors are giving your situation attention. :>)  On the downside, they don't know much to help the issue.  Are you managed well enough on the current protocol?  Are things stabilizing or is there a chance they could get worse.  I guess they always could but it sounds like it has been a few years.  Do you have any bleeding from the oesophagal varices.  Why do you they think you developed this?  Your liver sounds like it's in great shape.  But I guess the why is part of the mystery!  

[Mandyrose63]

Thanks for your reply and I will answer your questions the best I can. Yes I have some amazing specialist who have been treating me from the get go and yes I am managed well too. Like I said above I have to have regular Liver function tests every 3 months and a FBC etc to make sure everything is going ok and my Liver is still functioning properly. Besides all the blood clots in other area's my Portal vein to my Liver was totally obliterated as one of my reports states. The blood clots still remain there all these years later,but with the help of the blood thinners(clexane) that I inject daily,some blood is getting through in that area,but fortunately for me what happened was that there were small veins that formed and took over the job of the Portal vein. These are called Collateral veins,hence why I have to have regular Liver function tests. As for the question,..am I stable. Well yes to a degree. But things could go horrible wrong as there is no cure for my condition,and even though I am on blood thinners the specialists have said there is always a chance of more clots forming,plus another issue is if something went wrong with those Collateral veins that formed(Clots possibly or maybe something else?) then I would be in serious trouble as no blood would be getting to my Liver and no new veins would form again. As for another serious issues pressure could build up even more due to the Portal vein obstruction and those Varices in my oesophagas could burst,then I would be bleeding internally which would be life threatening if I didnt get to the hospital on time. The specialist have always told me to be aware if I ever bought up any blood,or passed blood in my stools,that I should get to the hospital immediately.So far I have no bleeding,and as mentioned above they are only Grade 1,but that can change. Hence why I have to have regular gastroscopies so they can keep an eye on them as much as possible,and if at the time of the procedure they noticed the varices enlarging they have informed me that they would have to band them and hopefully stop the bleeding.. I also have to have regular Colonoscopies too,since my Messenteric veins were involved also. So basically they take pretty good care of me and I am monitered well and managed as best as possible. I still get cramping in my stomach from time to time which can be quite painful and it feels like my stomach is being twisted and then I find it hard to eat for a few days,but it eventually settles down. I just manage it at home,but do know when to go to hospital also if it is too severe as like I mentioned I am fully aware that things could go wrong. So even though this happened way back in 2012 this is a lifelong problem for me,it is managed as best it can be with regular checkups,blood tests and procedures as mentioned above. I am actually going in for a CT scan early Septemeber as they just want to see how things are going internally,and it's been awhile since my last Scan,then I will see my specialist again later that month,just to discuss things as usual. As for the cause,..totally unknown in my case??? And just because it's been 7 years since the diagnosis,doesn't guarantee me that all will remain okay,but I don't really think about it as it's out of my hands. I just look after myself,eat healthy,exercise and do all the things that is recommeneded for me by specialists and will be on blood thinners for life. I hope I gave you plenty of information.

[christyrose1]

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?

[Nolaman9]

I had a sigmoid colectomy removal on October 15, 2014 and spent 4 days in the hospital. My recovery was on schedule until about 11 days later. I had this ripping/tearing back pain that was 4/10 pain. A few days later it was 10/10 back and abdominal pain. My wife told me my face was white as a sheet. Went back to the hospital on October 30, 2014 and was diagnosed with PVT. They started me on Heparin and I was NPO for 51 hours. They switched me to Lovonox injections and Warfarin after a couple of days. I was released after 4 days and currently taking Warfarin. They want me on this stuff for 6 months. I will have another ultra sound in March and my hematologist stated he would take me off Warfarin if the clot is dissolved. It's a nasty drug, but I guess keeping me alive. I don't let this condition keep me down. I've been running about 10 miles a week and lifting weights. (nothing too heavy) My doctors are baffled that I have this rare and uncommon clot. And there is not too much information regarding this condition. Are there any PVT support groups out there?  

[Jnthn]

I just left the hospital with the diagnosis of SMV thrombosis. Mine seems to have been a result of the emergency laparoscopic appendectomy I had a week prior to my readmission to the hospital. I have a follow up with a Coumadin clinic in the morning to start my 6 mo regimen.

[80proof]

I'm 32 male its been 3 years since I had a blood clot in my  smv.   I don't know why i got the clot.  It would be nice to talk with someone with same problem.  doctors put me  on blood thinner rest of life .  I would be nice to know what caused it.         You can email me so we can talk.     Paul_80proof              yahoo.       com

[Surpi0505]

I am  a 30 ur old male who had portal vein thrombosis 2 years ago. My vein was 100% clotted. After 3 emergency surgeries and being in ICU for 10 days my life was saved. They also did TPA infusion on me. I currently take coumadin and will have to stay on it my hole life time. I would be happy to share more info with u. U can contact me at ***@****

[Dules5204]

Factor 5 Leiden gene mutation is the most common hereditary hypercoagulable disorder in the U.S. What this means is that your Factor 5 (which is part of your clotting cascade) cannot be broken down so clotting is left partially unregulated. If you get one copy of the gene passed down from your parents you have 4-8 times more of a chance to have a DVT or venous clot and if you have 2 copies then it is around 80 times more of a chance to have a clot. Most people are put on an anticoagulant like Warfarin (Coumadin) to decrease the chance of clotting. Patients are also asked to not go on long plane trips and to avoid things with excess estrogen and progesterone like birth control pills because these things cause an increase in clots too. Vitamin K is avoided in the diet because it counteracts Warfarin and will cause it to not work. Anytime a clot is found in uncommon parts of the body and in patients of younger age it is important to look for genetic cause of hypercoagulation.
- 2nd year med student

[onemorecat]

lso had thrombosis in my portal vein and two in the mesenteric vein (one anterior the other posterior)  Mine occurred in August of 2007.
As above I went to the emergency room  with extreme pain in my upper abdomen and bottom of my shoulder blade. Was hospitalized for 9 days and put on heparin, and morphine.
I did not have any type of cancer, lupus, liver or gallbladder problems although my liver enzymes were a bit high at that time.
I was tested by a Hematologist and diagnosed with "acquired protein a resistance" A hereditary blood disorder. I am not able to take any type of hormones (birth control, hormone replacement therapy etc) I will need to ensure I am constantly hydrated (lots of water which is good for a body anyway) as the risk for getting clots again is quite high. I also need to ensure that I do not sit at a desk or stay stationary while traveling in a car, plane etc. for long periods of time. I am at a very high risk of recurring clots for future surgeries.
My family all were tested and so far they are all free of the disorder except for my daughter. So, as a word of advice maybe check to see if it is a blood disorder. If hereditary it may be worthwhile ensuring your family members are also tested.

[vhall]

My best friend (25 yrs old) has recently been diagnosed with 'portal vein and superior mesentric vein thrombosis with chronic thrombosis of the inferior vena cava' she also has 'factor v leiden heterozygous'. she has just been declared disabled and is no longer allowed to work. Im trying to work out what this means for her in the long term, ie mortality and morbidity rate and also the chance of her being able to have children.
I would appreciate any replies, many thanks.

[cazsb]

Dear Akabler,
I was taken into hospital 3 yeas ago with a blood clot in the mesinteric artery. It was called ichaemic colitis. I was in hospital for  days and the clot had to flush through on an IV. Thankfully I didnt end up having surgery.

I too was told it was rare, but I have had other clots over the years, so nothing suprises me any more.

Best Wishes

[mona35]

Hi CalGal,
I was diagonsed with portal vein thrombosis in Jan this year ,Was in hosptial for 2 weeks and put on to warfarin for 12 months .
I went on the pill around december time and the docs think that was the cause of the thrombosis.
Its been about 6 months now i just had a CT scan with the dye last week and the clots still there my consulant has said that it might not ever go .. im really worried but i cant chnage it .
When i first went in to hospital i was in severe pains they have eased off now but if i over do it then the pain will kick in again and ive got to take my strong pain killers and up all night .:(

Hope to hear from you soon

S

[lovelife50]

A ct scan with an IV contrast (3/15/10) found I had multiple blood clots in the portal vein. Further tests showed the cause to be a hereditary blood disorder called gene 5 mutation. It is pretty complicated to fully understand. The ct scan showed (fortunately) no cirrhosis or other damage to the liver. I have been to two hematologists and the dr I am crrently seeing has me on 2 injections of 60 mg lovenox and 5mg of coumadin daily. I am to get my blood tested today, my pt/inr #'s have been low (1.1-1.2). Dr said it should be between 2-3. I am scared and am consumed with confusion about all this. It is very hard for me to watch my intake of vitamin K veggies and alcohol. I am a 50 yr old woman in otherwise good shape and condition. But I do (or did) drink alcohol on a daily basis as well as ate all the veggies not allowed daily. I was told no alcohol or veggies w/vitamin K. This is a VERY big change to my daily lifestyle and would like anyone else's suggestions who may be going thru the same or know another who is. Also, the pain is constant, does it ever go away?

[cindy31]

i have just had this, i have a blood clot in my portal vein, which they do say is rare and of course no idea why i got it, the ultra sound never pick it up....a ct scan in the er was the only thing that found it.....spent 6 days in hospital on morphine and warfarin, discharged on warfin and pain meds, but would like to know how long it is going to take till i feel better.......

[vanss3L]

I hope you are on the mend.  Your symptoms are identical to my boyfriends, he is still being monitored and on Coumadin.  He ended up with a bad case of gout shortly after being released from the hospital and it's still acting up a bit.  Weird.  He still has the blood clot, he can feel it, but he is not in severe pain any longer.  Hopefully the Coumadin will dissolve the clot.  They said it could be 6 months.  It's been 2 1/2 months so far. Good Luck, and Get Well.  

[carsus]

Just discharged from hospital a couple of days ago. Admitted thru ER after several days of severe abdominal pain (just under rib cage), nausea & vomitiing. Diagnosed with clot in superior mesenteric vein. Given Heparin, morphine and since release on coumadin. Must be monitered while on blood thinner and will return to hospital for another CT-scan. Scary. Doctors have no answrers as to why, however I did have gastric bypass sugery 3 years ago...connected?

[vanss3L]

My boyfriend is in the hospital now, 1 week so far - diagnosed with portal thrombosis, a blood clot in the portal vein extending into the splenic and mesenteric veins.  It's been awful.  It started about 3 days before hospitalization, with pain in abdomen, just under rib cage.  A visit to the Dr. office for blood tests confirmed elevated liver enzymes. Assuming it was galbladder, Dr ordered CT scan @ hospital and when finding something questionable, they followed with an ultrasound which confirmed the blood clot.  He was hospitalized immediately, and given heparin and morphine for pain in which he got sick on.  Finally, given heparin, coumadin, and strong doses of vicaden he was able to get thru the pain.  Abdomen swollen and sore.  Can't eat much, nausea...  The pain killers caused him not to be able to eliminate so he was given a catheter and suppositories.  It's been a long week with not much information as to how he got this, why he got this, he is normally a healthy active guy of 54 years old. Never been in a hospital before!

[80proof]

then end was at yahoo

[80proof]

might be better to get at Paul_80proof***@****

[80proof]

I,m 28 and have thrombosis of the superior mesenteric vein.   found problem 3-16-08. still trying to find why.

[Akabler]

thanks for the info! unfortunately still having trouble finding people who have a blood clot in same area. i really appreciated your help though

[CalGal]

I'm not sure these people on still on the board, but check here: http://www.robprince.net/dvt/forum.asp?action=list

When you get to the site, look in the late January dates.

Also, check for support boards for DVT - deep vein thrombosis. Sometimes people go there because they're not sure where else to post.