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Nov 30, 2018 · Interrupted ivc and deep vein thrombosis in Heart & Blood Health

I feel like I should add this for the next poor soul looking for answers about an absent inferior vena cava considering the rarity of the condition. We feel much better. My sister met with a VS that has had 3 previous cases of this and also consulted via phone with an additional specialist. They agree that he will be on blood thinners for 6 months then moved to one aspirin daily. This is protocol for a situation such as his. They believe trauma, due to some work he was doing that this is what triggered the 2 clots. He has no swelling in his stomach or his legs. They do not believe this is something he will grapple with and they assured us that though it is rare, there is consensus that this is less rare than what is known as people live with it their entire lives without incident. Providing the fetus survives, the body heals itself by making collateral veins that do the work albeit, less efficiently. My nephew has no other congenital abnormalities which is helpful in this situation and they believe he will go on to live a normal life. If someone happens on this as I did because you are scouring the internet for information while waiting for that coveted appointment with the specialist… FULL STOP. We are not doctors and we cannot easily discern what we are reading. The information is frightening and worst case scenario. In most cases, it will be OK. Blessings

Nov 29, 2018 · Interrupted ivc and deep vein thrombosis in Heart & Blood Health

@interruptedivc My nephew was recently DX with absent inferior vena cava. Went to ER for pain in stomach/groin area and it was found. His first appointment with a vascular surgeon is today at 3pm. I am in the northern Chicago suburbs but she is in So. IL. She has consulted with a VS from St. Louis who has also seen this before (once). He told her he would go to Mayo if it were his child but that he would help her along the way. Coincidentally, there is a VS in So. Illinois that has also had experience with this situation; that is who she is seeing today for initial consult. Our entire family is absolutely terrified. Our boy is 20 years old. Can you please share more about your journey? As in, what your next steps have been since your post in May? Thank you so much.