Interrupted ivc and deep vein thrombosis

Posted by interruptedivc @interruptedivc, May 19, 2018

My son now a young adult of 23 is looking for answers on how to live his life with no inferior vena a cava and not worry about the daily complications of deep vein.thrombosis .

At the age of 13 through a child hood sport accident we found that he had an interrupted ivc. We were told that there was nothing that could be done to fix it and it should not be a problem. Most people that have this anomaly never even know it and does not cause any problems to later in life.we thought later in life would be retiring age but st 17 our lives changed. He was complaining of back pain, a low grade fever, which the pain became persistent, enough that we took him to the local emergency at the hospital. They diagnosed him with having a sarcoma , which our hospital said they could not handle and transported him to chop. They proceeded to want to biopsy the tumor and while they were in there take out his appendix. After hours in this procedure the surgeon came out and told us that he had good news and bad news/ good news was it was not cancer- the bad news he peeled this mass back like an onion and was not sure what it was. Knowing my son had an interrupted ivc I found a white paper that mentioned it could be thrombosis in his abodomen. The hospital said no and sent him home after five days and would have to evaluated evaluate this further. He was sent home with the same back pain. Within four days of being home his pain worsened and his bowels no longer worked and his legs were swollen and discolored. We went back to the hospital and were told that he had Dvt in both legs and completely occulsef and the so called tumor was a giant clot probably a vein that was possibly where the ivc was located. They did several days of ir intervention and also found out that he had factor five- a clotting disorder.
So my son is now 23 and has been living with this anomaly and is now having the similar symptoms as when he was 17. We are looking for someone who specializes in this anomaly and help him with the circulation with his legs. I am also reaching out to parents that if they have a son or daughter that may have an ivc anomaly to be aware that this clotting condition happens between the ages of 17 -21 not when they are old, also operating on a patient with this disease complicates there Venus system. Do reaching out for a miracle.

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.

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Liked by momofjames

REPLY

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.

REPLY
@uncw94

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.

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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

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@momofjames

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

Jump to this post

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

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