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interruptedivc
@interruptedivc

Posts: 3
Joined: May 20, 2018

Interrupted ivc and deep vein thrombosis

Posted by @interruptedivc, Sat, May 19 10:46pm

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.

REPLY

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

Good morning @interruptedivc. I'm glad you came by Mayo Connect where a lot of us gather daily to talk about medical problems and share what we know, how we feel, our hopes for best treatments, and information from others dealing with afflictions. I'm not a medical professional, and I have no personal experience with IVC, but I know this as a member of a family with four relatives who benefited from Mayo Clinic's patient-devoted approach to medical care: Mayo Clinic is the best medical facility in existence, and if you can enroll in a Mayo diagnosis and treatment process, your son will get a renewed sense of life's good prospects and of his ability to manage his condition.

@kanaazpereira has given us a good foundation for looking into your son's IVC and its evolurtion. It seems to me that the last 10 years are reassuring by providing a stable understanding of your son's conditions. A few questions come to mind that you may wish to address with his medical team: The first, from Kanaaz, raises the prospect of an IVC filter to prevent lower-body blood clots from getting to his heart and lungs. A second question might be about the Azygos vein, which cross-connects the Inferior Vena Cava with the Superior Vena Cava and often works as a detour for deoxygenated blood around an "interruption" such as your son's blood clot (which might be located below the Azygos and unable to capitalize on this detour). My third question is whether the last 10 years have turned up new treatments for Factor V hyperclotting, which seems like a major factor in the deep vein thrombosis in his legs and pelvic region.

Our friends on Mayo Connect will help us find others who are dealing with this rare mutation and the treatments that show promise, and we will join you in looking more deeply for good literature on the condition. I know you'll be glad that you have become a member of the Mayo Connect family, and I hope you'll remain in close touch with us from here on. Martin

Hello @interruptedivc

I would also like to welcome you to Connect. You have come to a good place for information and support. I would heartily agree with the suggestions of Kanaaz and Martin that a consultation at Mayo would certainly be worth the effort. At your son's age, he needs the best advice and treatment that he can get for this difficult-to-solve problem. He really needs to be in touch with doctors who have experience in this area.

I look forward to hearing from you again at Connect.

Teresa

Liked by mbabkk

@kanaazpereira

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

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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

@kanaazpereira

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

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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

@kanaazpereira

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

Jump to this post

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

Liked by rsspraggs

@kanaazpereira

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

Jump to this post

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

@kanaazpereira

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

Jump to this post

What is a Venus system?

@kanaazpereira

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

Jump to this post

@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.

@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.

@rsspraggs

@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.

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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

Liked by islandmomma

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.

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