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missing superior vena cava

My partner has found out that she suffers from not having a SUPERIOR VENA CAVA, thats right its missing. She has had this from birth, and the hospital doesnt have a clue what to do to deal with vthe situation. She had exploritory surgery 10 years ago, and that when they found out about this condition. According to the doctors, she is the only person EVER to have suffered with this.

Her symptoms are :-  1 - shortness of breath,
                                2 - weakness of joints, can come on very suddenly.
                                3 - sudden panick attacks.

Has also had various LUNG FUNCTION tests, failed 3 and passed 1. Has been tested to the hilt on just about everything. ECG, BLOOD TESTS, lung function.

We would like to know if there is anyone who has suffered with this, or any doctor that chad treated someone with these symptoms.

Please could anyone with answers, e-mail me at ***@****
5 Responses
976897 tn?1379167602
wow this has me very intrigued, even though it doesn't seem possible. The superior vena cava receives used blood from the upper half of the body and is connected to the right atrium. How is the blood from the upper part of the body getting back into the right side of the heart? Is it going through the inferior vena cava?
Avatar universal
I'm not sure how the blood is circulating to the heart, but I have a theory. I would think that the body would reroute the blood to accomodate for the missing vessel, and as such more blood would flow through smaller veins than would in anyone who has a Superior Vena Cava. We recently discovered that my mother has the same problem because of an issue with her stomach and digestive system ingeneral. For some reason, She hasnt had a bowel movement in about a month, and doctors have been running tests on her constantly. During the last CT scan, while running contrast they discovered the missing Vena Cava. They think the two may be connected, as do I. I believe that because of the body trying to make up for the missing link, the amount of  blood flowing through the veins in her lower body  is greater than the veins can accomodate, and have become swollen or inlarged. Because of this, i believe it has caused a narrowing of her intestines, causeing a blockage. Any Feedback?

Pandalytle
Avatar universal
Yes, that´s right. The  blood flows through smaller veins, which the body has created to replace the missing one. I also have missed the superior vena cava from birth, but it was discovered just couple of years ago because of massive thrombosis at my both legs. I was treated in Helsinki University Hospital´s bleeding disorder clinic (I am Finnish), and I ´m quite well now.  I get little out of breath when walking uphills but not otherwise.
Avatar universal
Sorry, I need to correct, that I miss the inferior vena cava, I guess its more popular, than missng the superor vc.
Avatar universal
My Father is 75 year old and 3 year ago he needed a pacemaker and during the operation they discovered he is missing his superior vena cava.
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