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Missing Inferior Vena Cava


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Old 05-08-2017, 07:52 PM   #1
SRedlhammer
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Question Missing Inferior Vena Cava

Hi,

I am 21 one and have just been released from the hospital after having a huge blood clot removed. After a while they discovered I was missing my inferior vena cava.

It began a month ago with minor lower back pain that seemed to just get worse every day. It became very painful to walk and even sit up straight. Nothing gave me relief. The university physician said I just sprained a muscle in my back and pinched a nerve. It felt like the pain would move around to different parts of my back and I just passed it off as being stressed. One week ago from today I noticed a stiffness in my leg. The back pain had dissipated but it was hard to walk and bend my leg. The next day my leg was significantly swollen, incredibly stiff hard to move. I went to the doctor where they immediately though it was a clot. They did an ultra sound on my left leg up to the groin and found nothing. I was sent home with useless pain medication. The next day the leg grew significantly, it was discolored and double the size of the other leg. The swelling was significant from the top of the thigh to my toes. We went to the ER, were the did a CT on my leg and my chest. They still found no clot. They did another CT of my stomach/ pelvis area and discovered a monstrous clot ranging across the pelvic area. It took 6 doctors and 2 radiologists to find the clot and then realize I was missing my inferior vena cava.

The leg continued to swell and grow until it was 3 times the size of my other leg and I could no longer lift it. It was red and really scary looking and just a shock for people to see. They think that birth control could be a factor in it. I had a surgery and the swelling has actually gone done significantly. After 5 days it is very minor. I have experienced weight gain and pain from recovery but atleast I can walk again. In another week I should be back to almost full mobility.

My problem is that I will have to be on blood thinners the rest of my life, as well as compression stocking almost every day. The doctors have no clue what will result from having no inferior vena cava and its hard to not know what to expect in life. I am apparently the 66th in the US with this case. Has anyone had experience with this? How will it limit what I am allowed to do? Can I have kids? Should I expect more clots even with a blood thinner? Can I work out?

I hope someone can offer advice.

 
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Old 05-13-2017, 10:22 AM   #2
Jen790
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Re: Missing Inferior Vena Cava

Yes. Omg to find someone else missing the inferior vena cava. My son is 25 and he is in so much pain. He has been in and out of hospitals forever. His is sever. He is missing that plus he has factor 5 blood diorder. He has a long history of priblems. He is now blood clotted from upper thigh all the way down in both legs. They have done a couple of surgeries. Nothing worked so great yet. He has gone through not being able to walk for long periods of time. In hospital now and this is the worst time ever during all of it. They are talking about major reconstruction surgery.

Last edited by Administrator; 05-26-2017 at 04:35 PM.

 
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