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Interrupted ivc and deep vein thrombosis
Heart & Blood Health | Last Active: Jan 27 9:14pm | Replies (32)Comment receiving replies
My 26 year old son was diagnosed with the complete absence of IVC when he was 19. It has been 7 years with no further complications/issues. A couple weeks ago he was having a lot of pain and went to the hospital. Because of COVID we weren't able to go inside. They discovered he had DVT again. Last week they surgically removed the clot and confirmed all of the clot(s) was removed and sent him home. They are doing everything possible to send him home rather than at the hospital because there are no rooms available.
10 days after surgery, he started getting pain again and was unable to walk. He went back into the hospital and they said he now has several more clots. We haven't been able to meet with the vascular surgeon and the information his wife is relaying to us is difficult to understand. The surgeon was discussing with them the prospect of creating a new IVC including new paths. I cannot find any information on creating a new IVC that isnt combined with tumors or just connecting segments of IVC that were started/not fully formed.
Replies to "My 26 year old son was diagnosed with the complete absence of IVC when he was..."
Hi @paulandcrystal and welcome to Mayo Clinic Connect. I have found that it is definitely rare for surgical intervention on an absent IVC to be done as there aren't a lot of cases documented, but I did find two that were mentioned in the Med Scape article and they seem to be successful.
https://emedicine.medscape.com/article/1933035-treatmentCan you ask your son or daughter in law if you can sit in virtually on the consult with them to understand what's going on? I know how difficult it is to have an adult child that you still want to nurture and care for, but they are old enough to make their own decisions.
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We are several years behind you. My 14 year old grandson was recently diagnosed with absence of IVC. It was discovered because of two major blood clots in his upper legs. The clots have been removed and he is now on blood thinners and compression stockings. We are looking to find whomever is the "expert" in treating this rare condition. A second opinion never hurts. I have not yet found a case of creating a new IVC, although I do wonder if someone is researching growing IVCs with stem cells or using cadaver IVCs to replace that that is missing. If I discover anything useful on the subject I will post it as well. Best of luck in your search. Your son is in my prayers.
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