Interrupted ivc and deep vein thrombosis

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

Hello, I’m a 48 year old male , I was diagnosed in 2016 with a complete absense of inferior vena cava. I had 2 blood clots, and a mini stroke. I’m taking Xarelto for life, my life did change, I can’t exercise or sit down for long periods of time, because that triggers my circulation and my legs get swollen and numbness in my toes. What I do is i get in the tube with hot water and salt and it soothes my legs. I usually doit every night before bed. Every person is different but if I can help you answer any questions feel free to ask. Trust in the Lord .,
He will give you the strength to move forward.
Ricky

My 14yo daughter was just diagnosed with agenesis of IVC, she has has dextrocardia with situs inversus totalis which can complicate things. Haven't found others in similar situation. So far she appears healthy. Shes never had interests in sports, only gymnastics (with friends) and swimming.
We will be seeing our new Cardiologist soon to figure all the details.

Not true unfortunately. As I was 36 when it happened to me. Mine was from a birth defect from being 3 months premature. I spent 7 days in hospital and 4 of those I could not much because of the treatment. Now I’m on apixaban 5mg twice day for the rest of my life. It didn’t need change my life to much other than wearing compression socks most of the day.

Hi I’m reaching out to you I to have young daughter that has no IVC along with a complete azygos circulatory system as well as lupus anticoagulant syndrome. All this started when she was 17 with a simple Tonsillectomy. One week after the surgery we had her in the ER with a swollen discolored leg that was cold to the touch, they sent her home saying she had injured it in some way. They did do a Doppler of the leg on that visit which showed diminished flow to the limb. We took her home only to return the next morning leg was worse and she had started vomiting. Her dad who is a RN and at the time worked for a local cardiologist requested they do a D-dimer they refused to do the test telling us it would not be accurate because she had just had surgery the week before still they sent her home. Two days later I had to call an ambulance at 4am because she couldn’t breath. She was admitted that day the doctor came in and told us she had the worst occlusion of her leg he had ever seen. They ran the lupus anticoagulant test in the hospital. At her follow up appointment with the cardiologist is when we learned that she had this blood disorder. She continued to have issues with the effected leg (pain swelling) that would not resolve because of this she was sent to Stanford to see a cardiologist that specializes in the vascular system he felt she would benefit from a stent to help blood flow. We returned for this procedure only to be told it couldn’t be done the doctor need to do another test. We returned for this test which showed she has no lower circulatory system (no IVC, no iliac vein’s no Renal’s to speak of she has 3 vessels in her liver 2 veins 1 artery) her ovarian veins help with the return to her heart but the test did not get the top of the heart to see how it all ties in. Your post was from a year ago I’m hoping you see this and we could chat I would love to know what you have learned

Hello! I know this a late reply. I hope you have received help and your son is doing better. But, in case you have not I want to share this information. Doctors Erin Murphy and Gregory Stanley at Sanger Heart and Vascular in Charlotte, NC performed bilateral vascular stent surgery on my 18 year old daughter Tuesday 7/23/19. The procedure took 5 hours and they basically recreated the ivc. We found out in March, 2019 that my daughter was missing her inferior vena cava below her liver. We saw the Asst. Chief vascular Dr at Duke who told us matter of factly nothing could be done and that my daughter’s body had accommodated for this. However, a family friend connected us to Dr. Murphy (704) 667-3840.
My daughter could not walk or stand long periods of time, her feet and toes would turn blue and she would often be winded and just got worse all of a sudden. She had played soccer for 8 years! In January she became very sick and has since been diagnosed with mixed connective tissue disease an autoimmune disease. She was extremely fatigued and began passing out numerous times a day. The missing ivc was an incidental finding on an MRI ordered because she couldn’t feel her lower extremities and due to the bluing of her feet and toes. Hard to tell what was causing what...but she takes plaquenil for MCTD, B12 and iron and started getting better mid-May. However, her legs hurt and still couldn’t walk or stand for any period of time. We elected to do the surgery in hopes of improving her quality of life and to help the numbness feeling in her legs and bluing of her feet and toes. Dr Murphy has authored many publications regarding atresia and occluded ivc.

Hello,

I saw your post regarding your son and wanted to reach out with our story. Maybe we can help each other. In 2016, when my son was three and a half, I took him into the doctor for an ear infection. The nurse tried several times to take his blood pressure and was unable to do so. It turns out, his bp was 150/110. I was floored and took him to the ER where he was hospitalized for a week as doctor's worked to lower his blood pressure and discover the source of the extremely high bp. An MRI revealed a malfunctioning kidney and agenesis of the lower IVC. Blood testing showed heterozygous Factor V Leiden.

Less than two months later, the malfunctioning kidney was removed and over the course of the next two years, my son went from taking three bp medications to none. While we are grateful his blood pressure is closer to normal, and that he is a wonderfully, normal 7 year old boy, we are faced with an uncertainty for his future. As time passes, the veins along his abdomen that are compensating for his partially absent IVC are becoming more and more pronounced. They look like large varicose veins that run from his chest, to the left side of his groin.

We have met with Hematologists and Vascular Surgeons who have told us the same thing: no recommended anti-coagulation at this point, due to his age. Doctors also told us that as he ages and goes through puberty, he will be at a greater risk for DVT. I asked about surgical interventions/grafts and did not get too much information or positive feedback. I take him for acupuncture to help his circulation and try to do everything possible to keep him healthy. We live in Germany, but are willing to travel to get him the help he needs. My hope is that as technology advances, I can find a long term solution for my son.

Hi Uncw94,

Thank you for sharing the information and I hope your daughter is doing well post surgery.

Reading your post gives me hope that we can find a solution for our son as well. Would you mind sharing whether the surgery was effective with an improvement in her quality of life? Our son is only 7, but I am preparing for the possibility that he may need surgery as he approaches puberty. Thank you and warm regards, Lauren

Hello! So sorry to hear of your son’s issues. Yes, the surgery improved my daughter’s quality of life. She can walk and stand for long periods of time and even drive now. I’m not sure where you are, but I highly recommend Dr. Murphy. She promised me she would treat my daughter like her own child(she has 3) and she and the staff were very responsive if we had any questions. Good luck!
Sincerely,
Marshae Williams

My 14 year old grandson is in the hospital right now. He has a blood clot in his leg and has just been diagnosed with No Inferior Vena Cava. The plan is to surgically clear the clot tomorrow and put him on blood thinners and compression stockings. After that I do not know. I don't think our local doctors see much of this. I would like to find a center of excellence where doctors have seen many patients with no inferior vena cava. Does anyone know who and where such expertise exists? I see the recommendation for Dr. Murphy in Charlotte. I will contact him but is their some university center that has a focus on this? Please help.