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An absent Inferior Vena Cava

sharahhn
sharahhn Member Posts: 6 Connected
anyone here who heard or know someone who was born without inferior vena cava? :/ and if you do has that person any problems?

Comments

  • Ails
    Ails Member Posts: 2,256 Disability Gamechanger
    Hi @sharahhn and welcome to the Community.  It is nice to meet you.  I'm sorry I am unable to answer your question, but there maybe other members who have heard of inferior vena cava and can assist you with this.  Please note, however, we are not medically trained on the Community and so are unable to comment on certain things.  Sorry I can't be of more help to you.  :smile:
    Winner of the Scope New Volunteer Award 2019.   :)
  • chiarieds
    chiarieds Community Co-Production Group Posts: 12,269 Disability Gamechanger
    Hi @sharahhn - Welcome to the community & thank you for joining. Congenital absence of the inferior vena cava seems to be rare. Like Ails, I wish I could help you more, but don't know anything further about this disorder, sorry.
    What sort of problems are you wondering about?
  • sharahhn
    sharahhn Member Posts: 6 Connected
    hello, thank you for Your answers  :* yes its rare and The doctors can’t tell me so much about it because they don’t know anything :/ I want to know if there are any risks or symptoms witch is related to this condition .  <3 im from Sweden so my english is not so Good :D  
  • poppy123456
    poppy123456 Member Posts: 28,537 Disability Gamechanger
    HI and welcome,

    I'm one of the community champions here on scope. Unfortunately, i've not heard of this either so can't be of any help.

    Have you tried using google to do your own research? Having just done this myself it's brought it some links with information but as you said your English isn't good then you may not understand the links if i post them but i will post them anyway.


    Hope they help.


  • PaulB1980
    PaulB1980 Member Posts: 2 Listener
    Hi, did you get any more information about your absent IVC? how did you find out? I have a congenitally absent IVC that was discovered a couple of years ago (age 37) after some CT scans following extensive blood clots / DVT in my lower abdomen / upper legs. I was fit and healthy leading up to the clots and had no idea that I had this condition. Luckily I have made a steady recovery and am back to almost 'normal' levels of activity, however, I am on life long medication to help prevent further clots. 
  • steve51
    steve51 Member Posts: 7,154 Disability Gamechanger
    Hi @PaulB1980

    Good Afternoon & Welcome it’s great for me you today.

    I am one of a team of Community Champion’s here at Scope.

    How about things going now????

    Please please let me know if there’s anything that I can help you with?????

    @steve51
  • PaulB1980
    PaulB1980 Member Posts: 2 Listener
    edited July 2020
    Thanks  steve51 all is good with me at the moment. Similarly to Sara the doctors / consultants couldn't tell me very much about the condition. The general feeling amongst the doctors is that this condition potentially increases the risk of getting blood clots particularly in the lower limbs / abdominal region. I was admitted to hospital with an extremely swollen right leg and severe pain in my lower back after a morning swim which was diagnosed as severe thrombosis in about 6 or so veins in my legs and abdomen - the pains had been occurring to a lesser extent for a week or so prior to hospitalisation. 

    After various tests / scans and treatment for the thrombosis I was eventually diagnosed with this condition. My consultant recommended a life long course of anti-coagulants (commonly referred to as blood thinners) to lower the risk of further clots / Deep Vein Thrombosis (DVT) forming - especially as I was keen to return to an active lifestyle and my consultant was very supportive of this.

    Before the blood clots I was fit and healthy, enjoying regularly taking part in triathlons and half marathons and I have been really lucky to be able to return (under doctors guidance) to swimming, cycling and running. From what I understand of blood clots / DVT the after effects vary in each case ranging in severity and duration. It took about 2 or 3 months for me to be able to comfortably walk for any length of time and I have been able to very gradually build back up to what I now consider to be my new normal. I have learned to listen to my body and if anything doesn't seem right (particularly unusual pains / swelling in my legs, abdomen or lower back) I get checked over - a blood test can indicate whether a clot is forming. 

    Hopefully sharing my experiences will be of help :)
  • sharahhn
    sharahhn Member Posts: 6 Connected
    @PaulB1980 Hello Paul! Thank you so much for your answer, I have so many questions to you but i wonder if we can talk on facebook Messenger instead ? 

    Best regards Sara
  • Katherine1
    Katherine1 Member Posts: 1 Listener
    Hello there, I was born without a inferior vena cava! ✋ The doctors told me they don't know exactly what to do but to exercise, and put your feet up at night
  • Tori_Scope
    Tori_Scope Posts: 8,262

    Scope community team

    Welcome to the community @Katherine1 :) I hope you're well. 

    This is quite an old thread now, so some of the other users might not be around any more. Feel free to make your own discussion about this if you'd like to!

    Let us know if you need anything. 
    Online Community Coordinator, she/her

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  • Kaisa
    Kaisa Member Posts: 2 Listener
    edited July 2021
    sharahhn said:
    anyone here who heard or know someone who was born without inferior vena cava? :/ and if you do has that person any problems?

    @sharahhn

     I just found this board and the talk of IVC. I am from Helsinki, Finland, 60 years old. I was born without inferior vena cava, too. They found it out 10 years ago after massive thrombosis in the lower part of my body. It took some time to recover complete. Now I can walk almost as before, and I haven´t had any thrombosis after (for blood thinner, I guess), but I can't do without support stockings, without them the legs feel quite heavy when walking. No notable problems otherwise.
    At a moment  I am just hesitating to take COVID 19 vaccination. How is it with you others, did you take the vaccination already?



  • Tori_Scope
    Tori_Scope Posts: 8,262

    Scope community team

    Have you spoken to your doctor about about whether you can have the vaccine @Kaisa? If not, this should be your first step. They should be best placed to talk through any concerns you may have with you.
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  • sharahhn
    sharahhn Member Posts: 6 Connected
    @Katherine1 hey☺️ I’m sorry for my late answer, I wonder if you have Facebook ? We have a group there with a couple of people around the world with this diagnosis ☺️ There we can discuss more about this if you want to☺️
  • sharahhn
    sharahhn Member Posts: 6 Connected
    @Kaisa hello kaisa ☺️ I’m from sweden and you are the first I got a replie from who is in Europe ☺️ We have a group on Facebook with this condition; IVC agenesis support group

    join this group and you can read about our story’s and share your own if you would like to☺️
  • sharahhn
    sharahhn Member Posts: 6 Connected

    @Katherine1 join this group on Facebook , there you can read our story’s and share your own if you would like to?

    IVC agenesis support group

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