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Old 12-05-2011, 08:59 AM   #1
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Missing Inferior Vena Cava

Hello,

About a week I just found out after being in extreme pain for a week that I was born without an inferior vena cava, or the vein that brings blood back from the legs to the heart. Luckily, all my arteries are fine. But 2 weeks ago I srtarted to not be able to walk and was sent home from work 2 days later, as I work out on oil rigs. I thought it was just a pulled lower back muscle. But as the days progressed the pain started to spread to my groin area.

I went to the ER and a doctor over the coming days and they all just thought it was a pulled muscle. Well, by Monday night the pain was so unbearable that I was just up all night trying to find a comfortable position to sit in to make the pain go away, but to no avail, no position was found. My entire left leg by that point was in so much pain I could no longer walk more than 5 ft. without breaking down and crying from the pain. I finally made it back to the ER Tuesday {a week ago}. I demanded they find out whats wrong with me so they gave me a whole bunch of MRIs, ultrasounds, and x rays.

Well, on Wednesday I was delightfully informed that from birth, Ive been missing my inferior vena cava. The doctor said that only 64 people since 2000 have been diagnosed with this problem. I will have to be on blood thinners for the rest of my life and have to quit my current job due to the blood thinners. So, basically I am pretty scared as to where my life going or not going at this point. I am seeing a specialist in Houston this week if I ever get out of this hospital. They said they could possibly implant a plastic inferior vena cava but that's a very risky procedure as if it goes wrong, I could lose both legs. Both legs are still swollen like crazy and I cant walk on my own still. Blood clots formed first in my left leg causing a chain reaction of blood clots causing my legs to swell up and deferring pain to my back at first. The docs said it could take from 3-6 weeks for the swelling from the clots to go down.

One other thing thats screwed up with me is whats called venus veins. Most people just have two in each vein going up to their heart. I have 1o of each in both legs, which is very problematic. Anyways, have any of you heard of this insane condition which will now completely change my life? Oh, and Im only 24.

 
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Old 01-15-2012, 05:05 PM   #2
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Exclamation Re: Missing Inferior Vena Cava

when my son was born the doctors noticed his left leg being pale he also had other health issues so he got transfered to another hospital the icu and they thought what was wrong with his leg was a blood clot but after millions of test they found that he didnt have the main vessel that goes to his left leg but other vessel formed to put blood flow into his leg they have no clue what to do with him yet they say it could cause the vessels to go floppy or explode that is scarey so they are still researching what could be done about this they put him on blood thinners to for a few days but took him off after learning this its freaky forreal

 
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Old 01-15-2012, 05:15 PM   #3
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Re: Missing Inferior Vena Cava

my son was born without the major vessel that runs to his left leg when he was born a few hours after while the nurse was giving him his first bath she noticed his left leg was pale and on top of that he had other health issues so they transferred him to a different hospital icu after a few test they put him on blood thinners thinking he had a blood clot in his leg but they did more test and found there was nothing there at all the vessels ran all the way down and where to spilts there was no vessel showing to the left but little vessel where there when looked at closely on the right was just fine they are still doing research on what to do with him they think that he will live a normal life but later on there might be issues with the tiny vessels becoming floppy or breaking which is a scarey or one leg could be skinner than there other they told me that he was lucky to be born with a leg oh and they took him off the blood thinners also just wanted to write and say ur not alone

 
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Old 02-03-2012, 06:54 PM   #4
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Re: Missing Inferior Vena Cava

@dunwitty
Just today I was diagnosed with missing my Inferior Vena Cava (Congenital absence of the Inferior Vena Cava ) via a venogram test that I was given yesterday. I've been desperately searching the internet looking for answers.
My right leg has been swollen and in pain for the last three weeks.
It is a very scary time, I feel your pain. I am only 33 years old and it has already drastically changed my life.
Would you update me on your findings? I will do the same, best of luck.
Chris

 
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Old 03-19-2012, 01:02 PM   #5
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Re: Missing Inferior Vena Cava

Hello,

I just found out I was also born without an inferior vena cava 5 weeks ago. I initially went to the ER with back, and I thought it was from the gym. I was then out on muscle relaxers and told to take 2 days off and be on bed rest. 3 days later I have the most excruciating pain in my back and pelvis, and I'm dizzy. So I immediately get a ride to the ER again. I am admitted right away because I am pale and flush. Once in a gown, the nurse and doctor notice my legs are swollen which I told them I never saw this, and my heart rate was 160. They order a CR Scan and send me in an ambulance to a nearby hospital who have vascular specialists.

I was in the hospital for 2 weeks. I have been out of the hospital almost 3 weeks now, but I am still severely clotted. My walking has improved, but I am limited by pain. I am still on a lot of meds for the pain such as Oxicodone and Oxicotin. I continue to push myself to walk more and more. I have not get returned to work, I have been out about 5 weeks now.

While in the hospital the doctors almost noticed I have a mass inside me near my abdominal area on the right side. They are unsure if it's a cancerous mass or vascular. I have a CT Scan scheduled in 2 weeks and appointments with my oncologist and vascular doctor right after.

I am a 25 year old male, who is in shape, watches what I eat, and enjoys being healthy. Before this happened I was going to the gym about 5 days a week, and ran about 3-4 miles 5 days a week. This literally came out of no where and I had no warning signs.

My doctor has only seen this condition about 3 times. I would really like to know how you guys are doing now with your health issues. I'd you have any questions feel free to ask. I hope to learn much from you all about your status. Hopefully we can share treatments, information, doctors and just advice.

I look forward to hearing back!

 
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Old 04-02-2012, 07:54 AM   #6
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Re: Missing Inferior Vena Cava

Hey man. I am actually in a very similar situation. I am a 23 year old male, who is very active and health conscience. I was in the process of cutting body fat and exercising a lot. I was doing cross-fit as well. Woke up with lower left back pain one morning. I just figured I had done my back. So I didnt workout for a week and just walked it off. then about 7 days later, my legs just gave up and I was in so much pain to walk. I could only get comfortable laying on my back and then that became uncomfortable. So I got an MRI. The results came back, and I was diagnosed with cancer. So I met with a specialist the next day, and they took a bunch of tests and it turns out that I didn't have cancer, but I had blood clots from the pelvis to my knees in both legs (bi-lateral).

So I had the PTA procedure done where they inject Lisis into your veins and bust the clots. Well I reclotted 2 days afterwards. So now 4 weeks later, I am able to walk a few miles and then my legs feel fatigued. I was running miles and working out! I just don't understand where this came from. I also found out while in hospital that god created me differently and I was born without a IVC. I am just wondering what the doctors are telling you? I am wearing these compression socks and will have a doppler at 6 months to see the progress. I feel much better now, I just still get fatigued. I am just nervous because my doctors said I will probably be on blood thinners for life. But they are saying it was an event that caused this perfect storm. Because I went 23 years without having it and I changed my diet and exercise and all of the sudden it happened! So if you could let me know how your situation is going that would be great!

I look forward to hearing from you. Thanks for the post!

 
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Old 04-14-2012, 05:12 PM   #7
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Re: Missing Inferior Vena Cava

Hey,

I am also wearing the compression stockings, thigh high 30-40 mmHg. I had another issue as well, they found a mass near my aorta, it started out as a large 6 cm mass, and they did not know what it was, they thought possibly a tumor. I just had a CT scan last week, and found out this week it reduced in size to 2 cm, so thankfully it is not a tumor. They believe it is a vascular issue, which will be treated with the Coumadin.

I will have to wear the compression stockings for life, also I will take Coumadin forever. We are having a little difficulty reaching a therapeutic level for my INR, I have been increasing my dosages as per my nurse, and I am up to about 6-8 mg a day. However, I am confident it will all even out soon.

I have remained positive throughout, and continually pushed myself on a daily basis, and I am very happy with the rate of improvements. I still have a lot of pain when I walk, and still limited as I cannot run or bike yet, but I am walking a lot more. I just introduced walking up hills the other day, and I noticed the clots are triggered in my shins.

How are things going for though?

Last edited by moderator2; 04-14-2012 at 06:25 PM.

 
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Old 04-15-2012, 09:32 AM   #8
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Re: Missing Inferior Vena Cava

Hey,

I am glad to hear that you are staying positive and doing well in recovery. I am still wearing the compression stockings and probably will for life. I will be checked at 6 months to make a decision about Coumadin. I will either be on blood thinner for life, but probably not Coumadin though because other drugs will take over. Or, I will be taken off and probably just take an aspirin a day or something. I am progressing well, I exercise daily at least a few miles a day. I have started slowly jogging small distances. Can't wait to have my legs back to how they used to be. Suprisingly, I don't have any swelling or pain. I did have alot of pain at the beginning. After about the first week, It changed from pain to fatigue. I am staying positive and just doing everything that I can to fully recover. I wear the compression stockings every day, I take them off to sleep. I take my medicine at the same time every day, stay very hydrated, and not sit for extended periods of time. Also, exercise is key. It also took them a very long time to get my INR right. but now, they think they have it regulated. I had to do lovenox shots for 3 weeks until my level reached 2-3. Hope things keep going well for you man. Also, What have the doctors said about your long term prognosis? Coumadin for life or some other drug? and If so, why do they say you need to be on it for life? Do you have any history or is it hereditary? Because with me, It is not hereditary, no family history, and its idiopathic (they don't know what caused this), so we think it is an event that happened due to extreme exercise, dieting, and no IVC. Keep me posted, and I will do the same. We will get through this man!

-Thomas

 
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Old 04-16-2012, 07:09 PM   #9
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Re: Missing Inferior Vena Cava

Hey Man,

I am glad you are doing well, congrats!

Yes, the doctor did say I will be on Coumadin for life, due to my heart using so many collateral veins instead of the Inferior Vena Cava. I have had a lot of pain this week, I have been doing much more like walking up hills, but also I am on a lower dosage of pain meds. I itially have been going through this since mid Feb, and was a patient in the hospital for 2 weeks, so I've really only have rehabbed myself for about 6 weeks. I tried returning to work but I was in a great deal of pain and extended my time off.

How are you doing? How is your pain? Have you been able to return to work?

 
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Old 10-17-2012, 09:35 AM   #10
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Re: Missing Inferior Vena Cava

Hi guys,

I just found this forum and I`m very glad I did. I`m in a very similar situation. On June 4, 2010 I was diagnosed with a Bilateral DVT (deep bilateral iliac vein thrombosis). I just woke up one morning and I was feeling as though as my legs were heavy, there was muscle tension and I was getting very tired after only 20-30 ft. of walking. I literally had to stop and rest every 20 ft. I had a hard time sitting as well. Then the lower back pain started the next day and in a couple of days I was on all fours and in a lot of pain. I didn`t have a bowel movement for 6 days. I forgot to mention that around day 3 my whole stomach was covered with veins (they were quite visible and were getting darker and darker). About a week before my symptoms started, I noticed that my jeans were not fitting as usual... I knew that I didn`t gain wight overnight and I ignored it.I went to the ER and I was told that there is nothing to worry about and they gave me pain killers (note: nobody checked my legs or abdomen). The pain was back just an hour after I left the ER and it was even worse than before. I went back to the ER the next morning and same thing happened. I was told there was nothing to worry about, but I insisted that there was something wrong and I had an X-Ray done. They said that I might be having "a little bit" of pneumonia and gave me a prescription for antibiotics (which I didn`t buy because I knew it wasn`t that). This happened 6 days after the first symptoms. That night I spent in the bathroom trying to have a bowel movement as I was worried that this was the reason for all the pain. At this point I was unable to sit, lay down, or walk. Sleeping was impossible. My parents found me in the washroom and my dad literally carried me to the hospital. Thank God I didn`t buy those antibiotics... The doctor who took me in at the ER (different ER ) was great.

I was admitted right away and they did numerous tests on me (ultrasound, MRI, CT Scan, blood tests, etc.) and I was diagnosed with Bilateral DVT (deep bilateral iliac vein thrombosis). I was born without an Inferior Vena Cava and my body has adapted to the condition by forming tiny veins that bring blood from by legs to the heart. I was a healthy 26 - years old female and have never had any health issues prior to that day (not even a cold). The clots were so many and so massive that they piled up and blocked both my legs (from the knees up), abdomen and part of my chest. I was put on blood thinners (heparin and coumadin). They fixed me in the hospital and I`m very thankful for everything they did. I spent 3 weeks there and after I was released, I had to wear compression stockings and it took approximately 2 months to recover. I was sent for another CT Scan and ultrasound 3 months later and doctors found that the blood flow in my tights and legs wasn`t as smooth as it was supposed to be. Needless to say I was put on blood thinners for life from day one and I check my INR every two weeks. I take between 7.5 and 8 mg of Warfarin every day and if I happen to cut myself, I just eat a bowl of cut lettuce It was a huge shock for me and it really changed my life, but I got used to the idea of being a little screwed up Life is good!

Good luck to you guys I`m glad you are doing good.

 
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Old 03-17-2013, 08:05 AM   #11
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Smile Re: Missing Inferior Vena Cava

hi, i want to share my story with you,having read your story on having an absent inferior vena cava.

I have the same condition,and have been searching the internet for years to find others who have this very rare condition! i was so pleased to read your story,knowing im not the only one with it!

Let me explain my story.I was 19 years old,in 1999 when i kept getting pains and adull ache in my back,thinking i had pulled a muscle at work maybe,i left it a while,when gradually the pain went into my left hip and groin area,having visited the doctor who said it was 'growing pains',then going back and seeing a different doctor,who said i had 'groin strain', and giving me lots of tablets to take,and to take a couple of days off work.over the next few nights i kept waking up in complete agony,crying out that i had so much pain in my left leg and unable to get comfy.the same thing happened the next night, and when i woke on the third night,i was unable to walk without screaming in pain.i woke that mornin g and my left leg was black,and extremely swollen and i was in so much pain,realising this was not just groin strain,i went back to doctors,she measured my leg and it was 3 inches bigger than other leg,she told me to go home back a bag,and get up the hospital and be prepared to say in.At this point i was very scared,and frightened at what was wrong.after numerous tests at the hospital including scans,mri scans,cat scans and other tests,laying there and seeing the concerned look on doctors faces,they explained that i had a huge blood clot in my groin and it was 8 inches long! and that i was very lucky to still be well,as it could have broke off and gones to my heart or lungs etc.they told me i had a very rare condition,in that my inferior vena cava was missing and my body had adapted and made new veins to carry blood back to my heart.they said i have a mass of small veins running through my abdomen and groin and that it was a very strange vein system that they had never before seen in any patient!!

i was told i had to be on warfarin for life and that i had to wear support stockings for the rest of my life.i was in hospital 1 week,and off work for 8 weeks, as it took a long time to be able to walk without pain.But 14 years later,im living a normal healthy life,with no problems since,doctors are amazed that im well and still here! at the time they contacted other uk hospitals,and nobody had ever come accross it! the only thing that has affected my life was the docs said it may be too dangerous to have children,and i may not get through the birth,so i had to come to terms with that huge life changing event,but over the years have dealt with it. it is so good to hear others with same problem,and good to share my story too! it would be interesting to hear others stories,and if anyone wants to ask me any questions,im willing to help if i can. anybody with any infomation,or same condition,it would be good to hear! keep well

 
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Old 03-25-2013, 02:59 PM   #12
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Re: Missing Inferior Vena Cava

Hi, I'm a 23 year old male, and just a few hours ago, I was also diagnosed with a missing IVC. While most (if not all) of you found out you had a missing IVC by experiencing DVT's, for me it was just a "lucky" catch. I still have to see my own CT scan, but let me start from the beginning.

Today, at around 11AM, I suddenly got one of the most severe abdominal cramps I've ever experienced. I had to puke about 10 times. I hadn't had anything to eat today yet, so not much except yellow bile came out. Gladly I work at the hospital as a final year intern (med student) and was immediately admitted by my colleagues and friends at the ER. Under the suspicion of acute appendicitis, an echo was performed, but since my appendix wasn't "a vu" (visible) they decided to do a CT. No explanation for my abdominal groans was found. Had I had an appendicitis, or had my appendix been a vu on echo, I wouldn't have had the CT, and my missing IVC would never have been discovered...

With my stomach aches disappearing quickly on painkillers, they sent me home, but I'll have to come back to the vascular surgeon in 2 weeks, and the hematologist after that, to check my clotting status and possible hereditary diseases such as Factor V Leiden (increased blood clotting).

After reading all of your stories, I'm not sure yet whether I will also have to be on OAC's (oral anti coagulants) for the rest of my life. I surely hope not, but if I do, I hope I can get those new NOAC's such as dabigatran. Those are a lot less of a hassle.

I hope you're all doing well.

 
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Old 03-27-2013, 06:11 AM   #13
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Smile Re: Missing Inferior Vena Cava

hi,
interesting case,lucky it got picked up and they can treat it.the trend seems to be males who have the missing ivc! as a female this proves very interesting to me! its so good to find other people with this condition,as i was looking for years and searching for information,good to get feed back from others too.i was supposed to be on warfarin for life ,but managing to live with out any medication.I wish you well in furture tests.It has been found out that my sister has a blood clotting disorder too,factor v laiden. would be great to here how you get on with the specialists. keep well .

 
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Old 03-27-2013, 11:22 PM   #14
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Re: Missing Inferior Vena Cava

Not happy about discussing this in a forum rather than with my Doctor but...
Our 14 year old son has been diagnosed with a missing IVC after suffering a very large DVT in his left leg. He has a mass adjacent to the sacrum and has Clotting in Iliac, Common Iliac and Femoral Veins and the MRI showed he has no IVC.
He is now on Warfarin (Coumadin) and Clexane injections have been given and we have appointments at Westmead Childrens Hospital in Westmead but I am interested to understand the long term issues of this problem. I have read a number of blogs after the Docs saying they had never heard of this.

 
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Old 04-07-2013, 09:04 AM   #15
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Re: Missing Inferior Vena Cava

Hi, yes it is hard to talk about on a forum, but I have found great relief from this forum having found others with the problem. Yes my doctors in the uk had never come across it at the time, and contacted other uk hospitals, but nobody having come across it.I hope your son is ok and getting better.i seem to be living a normal healthy lifestyle I exercise and keep well, and outwardly have no problems. I'm not any longer on any medication and it doesn't affect my life , other than not being able to have children, but other that that I'm fit and well and healthy, hope this has put your mind at ease and your son continues in good health x

 
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