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An absent Inferior Vena Cava

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sharahhn
sharahhn Community member Posts: 7 Connected
anyone here who heard or know someone who was born without inferior vena cava? :/ and if you do has that person any problems?
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Comments

  • Ails
    Ails Community member Posts: 2,256 Disability Gamechanger
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    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 member Posts: 16,173 Disability Gamechanger
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    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 Community member Posts: 7 Connected
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    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 Community member Posts: 57,158 Disability Gamechanger
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    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.


    I would appreciate it if members wouldn't tag me please. I have all notifcations turned off and wouldn't want a member thinking i'm being rude by not replying.
    If i see a question that i know the answer to i will try my best to help.
  • PaulB1980
    PaulB1980 Community member Posts: 4 Connected
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    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 Community member Posts: 7,147 Disability Gamechanger
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    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 Community member Posts: 4 Connected
    edited July 2020
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    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 Community member Posts: 7 Connected
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    @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 Community member Posts: 1 Listener
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    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 Scope Posts: 12,499 Disability Gamechanger
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    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. 

    National Campaigns Officer at Scope, she/her

  • Kaisa
    Kaisa Community member Posts: 2 Listener
    edited July 2021
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    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 Scope Posts: 12,499 Disability Gamechanger
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    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.

    National Campaigns Officer at Scope, she/her

  • sharahhn
    sharahhn Community member Posts: 7 Connected
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    @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 Community member Posts: 7 Connected
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    @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 Community member Posts: 7 Connected
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    @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
  • Airborne
    Airborne Community member Posts: 4 Listener
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    Hi Sharahhn, I'm really hoping!!! that you receive my message, I'm crossing my fingers that you do especially sinse your posting is 4 years old. I want you to know that your not alone!. I've read all the messages people have sent you on this platform and I can relate how lonely it is when you think your the only one in the world that has this, dare I call it, "the missing link". I also have a congenital absent Inferior Vena-Cava (IVC) I was diagnosed when I was in my first year of snr college, I was 14 years old, I'm now 58 years old. I'm happy to share what I've learnt over the years, having had my case reviewed in Massachusetts including my own experience. Unfortunately I'm not on facebook, so I'm not sure how to communicate with you or others privately, if you want, other than on here. I live in Australia now. Honestly, I'm so thrilled to have accidently stumbled across this site and seen yours and a couple of others with the same condition. I've spent the last 30+ years knowing that this condition effects 1 in every 12 million people world wide & yet it baffles me to think that finally! there are others out there and I am not alone. Anyway, if you or others (with the same condition) want to communicate, that would be so awesome, I really think this is a golden opportunity to establish a support network. What do y'all think? Thanks for reading this and I look forward to hearing from others. Take care!

  • PaulB1980
    PaulB1980 Community member Posts: 4 Connected
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    Hi @Airborne - it's a shame that you're not on Facebook as the IVC Agenesis and Atresia Support Group https://www.facebook.com/groups/788772418287481 is now up to 83 members and is really useful for sharing experiences and information relating to our condition.

    It would be great to hear your story and understand how the condition has impacted you / how you've managed it. How did you get diagnosed, was it after having a clotting incident at such a young age?

    For me it was a huge relief to find people with similar conditions, I think I have been really lucky to make a recovery from the clots that I experienced in 2017 and am still able to live a relatively active lifestyle, others seem to struggle far more than I do.

    I hope you are well.

  • Airborne
    Airborne Community member Posts: 4 Listener
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    @PaulB1980 Firstly, thank you so much for your message Paul! You have no idea how this has made me feel, just knowing that there's others out there with the same condition. I've never given up hope that one day I'd find others in the same boat.

    To answer your question about how I was diagnosed..how long have you got? (lol) I was initially mis-diagnosed after the first DVT, was placed on meds for a month and my mom & dad were told that this wouldn't happen till much later in life. It was a very short period of time thereafter that I was back in hospital with a larger DVT and idiots diagnosed me as having a phyco-social dis-order haha go figure that one. To cut a long story short it took me 8 frustrating years of threating doctors with lawsuits, that I finally had an exploratory procedure and found that I had a congenital absent IVC.

    My surgeon said that I would have a very short life expectancy and as a young guy, I lived every day as it was my last day.

    Honestly, almost all of the doctors who I've had to deal with, are about as useless as a steering wheel on a mule! For the simple fact that my poor parents were told I wouldn't live past 21, I reckon I'm doing pretty darn fine lol.

    I'm really sorry for rambling Paul but, dealing with this by yourself, as I've done for this long, this is just, I honestly cannot find the right word to describe this feeling I have. I would love to get on FB but sinse I've had my id stolen on that platform, sadly I don't think it'll be any time soon, but let me work on that.

    It's interesting when you mentioned your able to live a relatively active lifestyle, and that's seriously awesome!, I think a lot of it comes down to acceptance and being able to say to yourself 'ok, well this is what I've got, I'm not going to let it beat me. And you know my heart goes out to those who do struggle, because it's such a rare condition that it's hardly talked about.

    I don't know what the end game looks like Paul but I just prey that more recognition of this condition is recognized by the medical fraternity world wide. I mean, you said there's 83!!?? people, like wow!

    Ok so it's 9:00PM here in Australia and I need to go and order some dinner. Please do me a favor, if you don't mind & say a huge hi to all 83 folk

    One question, so I'm assuming your missing your IVC as well. Are you missing the entirety or just part of it?

    I look forward to talking to you more, if you want to, it's cool if you don't, it honestly would be so cool if you do, this is so friggin awesome!

    Stay well and for a friendly tip STAY AWAY from spinach AND kale!! regardless that it tastes like hairspray it screws up with the blood thinners. What have they got you on?

    Talk soon.

    Airborne Out

  • PaulB1980
    PaulB1980 Community member Posts: 4 Connected
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    @Airborne sounds like you've had more than your fair share of hospital visits! please don't worry about rambling - It's great to share information / experiences and have understanding people to bounce thoughts off. It's difficult to find surgeons and doctors with knowledge around this condition - there's a couple out there though, one of whom is on the FB group.

    Life expectancy wise - doctors don't seem to have much to go on, so like you say live each day like it's your last seems to be a good way to be :)

    With regards my condition - I was diagnosed with an absent infrarenal inferior vena cava, having had DVT in iliac and femoral veins… so I'm missing IVC below the kidneys I think that means? I was on rivaroxaban Xarelto for a couple of years and now on Apixaban daily to reduce the risk of clots.

    Like I say I think I am really lucky - before I had the issues I was on a fitness mission and still like to train daily / take part in triathlons. Unaware of my condition, in my 20s I was a smoker, gave up in my mid to late 20s, put a fair bit of weight on and subsequently got motivated to shed the kg's when my kids arrived in my 30s. Consultants seem to think exercise is a good thing, they're not so sure about going for really long distance events so I stick to more manageable targets. I've learnt to listen to my body a bit more closely these days, I'm still learning what pain is related to too much exercise, older age or something potentially more sinister…

    If you do manage to get back on FB I'm certain the support group would love to welcome you :)

    Here's to long lasting (relatively) good health !

    Cheers !

    Paul

  • Airborne
    Airborne Community member Posts: 4 Listener
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    @PaulB1980 Evening Paul

    Awesome to hear back from you! How'r you doing today?

    Sounds like you and I are in the same boat (Kind of) with the absent infrarenal inferior vena cava, except in my case, the entire IVC from my heart, down through my entire body is missing. The blood flow, through my body and return to the heart is via the para-spinal & capillary veins.

    The only down-side of this, is that I have visible capillary veins on each side of my torso and legs.

    So like you, obviously the ol blood thinners are a pain in the butt to take on a daily basis but I like to think that it's one element that is keeping me alive n kicking. Unfortunately, associated with this condition, I've had to endure varicose leg ulcers over the years due to the poor circulation, luckily they seem to have ceased.

    I've been taking Warfarin from the get go.

    Are you wearing, if you don't mind me asking, compression stockings? They are not the most fashionable things to wear but they do reduce any swelling in the legs but assist with better circulation, especially if your experiencing pain when your exercising. I source my stockings from the US, so if you want more info, will be happy to send you the link or they may have them in the UK, I don't know.

    I have to agree with the consultants remark about exercise being paramount. I still run, work out at the gym, swimming (which is really good) but the one thing that I was told to avoid is all contact sports. Other than that, I still drink, go clubbing. I

    Prior to developing DVT's I was into tennis, fencing, football & soccer, so it was pretty gut-wrenching when all that came to a grinding halt.

    It was interesting when I read that you listen to your body, I do the same too. I honestly cant say that I've accepted this condition even to this day but what I do know is that, it's pretty darn unique. Don't ever be afraid of it Paul, if anything, embrace it.

    I'm really keen to get on this group at FB, am sorting out it out now. Where does everyone originate from?

    Has anyone talked to you about diet?

    Anyway dude, it's getting late here and I still have a pile of work to get through before tomorrow, so need to sign off. Look forward to hearing from you again.

    Take care & we'll talk soon!

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