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Interrupted ivc and deep vein thrombosis
Heart & Blood Health | Last Active: Jan 27 9:14pm | Replies (32)Comment receiving replies
Hello @interruptedivc, and welcome to Connect. I'm so sorry to hear about all that your son and your family is going through. Thank you for sharing so that others may learn from your son's experience with interrupted inferior vena cava (IVC).
I found this paper on" Interrupted Inferior Vena Cava and Deep Vein Thrombosis - An Underdiagnosed Pediatric Disease" which might interest you: https://bit.ly/2IAL8Dk
I'd also like to introduce you to two of Connect's Mentors, @hopeful33250 and @predictable to see if they may be familiar with this condition.
@interruptedivc, is coming to Mayo Clinic an option that you would consider? Mayo Clinic and Mayo Clinic Children's Center in Rochester, Minn., is ranked among the best hospitals for heart and heart surgery by U.S. News & World Report. If you would like to make an appointment you could call one of our appointment offices, or also request an appointment online. The contact information for Minnesota, Arizona and Florida can be found here: http://www.mayoclinic.org/appointments
Would placing an ivc filter help prevent the risk of an embolism of DVT?
http://www.mayo.edu/research/clinical-trials/cls-20152532?_ga=2.157170431.59329320.1526387109-1869113372.1526387109
Replies to "Hello @interruptedivc, and welcome to Connect. I'm so sorry to hear about all that your son..."
Offering my special Prayers .HE will guide you to Right person and place soon.Keep Infinite Faith in God and HE will come.Om Shanti
Hello, we also just found out about our son having an interrupted IVC. He also had a DVT and would really appreciate any help in this matter. Thanks
What I realize from this experience is ;
Find a doctor that understands his anatomy
Someone that can guide him through life with his condition
Don’t let anyone operate unless it is a necessity life or death
It complicates the Venus system
Have his blood stay following possible blood thinners so there is no clotting
Once the clotting starts the complicatin starts
Exercise regularly swimming and running would be the best
Absolutely no smoking
No long car rides or air flights
I could go on
But let us know your specifics
What is a Venus system?
@donnaabell, I think she referred to the venous system, which in human anatomy refers to veins that drain into the right atrium of the heart without passing through two vascular beds. The term systemic venous system is often used to differentiate veins that drain the pulmonary system (the pulmonary venous system) and veins that drain the digestive tract (the portal venous system). Large veins that are considered part of the systemic venous system are the Superior vena cava and the Inferior vena cava.
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I thank you all for respnding
My son and I have been to Hopkins,Jefferson, penn and children’s hospital of Boston
We had been in contact with Mayo in minn when this first started
Only Boston would help us due to his age at that time
He was seventeen
All the hospitals will not touch him
It would be opening a can of worms
An filter will not help apparently the clots will not go up because he has no ivc
What does happen is his lower extremities clot
He actually starts to clot in his abdomen first
Which effects his Bowles and his lower organs
He has pain in his back and stabbing pains in his groin where the ilia seems are
We are looking for a hematologist that understands factor five and his venous system
I guess we are looking for a team that will work together which is hard to find
This week we met with a new local vascular doctor
Who won’t touch him but will help us manage with a specialist
We had additional test this week that were inconclusive
We have a new meeting next week with a new local hematologist
We would consider coming to mayo but he should not drive or fly due to the clots
We would also like to talk to a specialist at mayo before considering coming that distant
I feel like it just fruitless at timed
There must be something that someone can do