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I Congenital absence of the inferior vena associated vascular disease

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jackjack2511
jackjack2511 Community member Posts: 3 Listener
Hi lm Jackie lve been looking for ppl like me for many years now and ur site popped up
I’d really like to chat with others who have this medical condition.
I found out l had this condition soon after l gave birth 20 yrs ago and my legs swelled and went blue and they ran the dye from toes to pelvis then up to my heart.this has affected me greatly in the last 12 yrs lve had a vascular ulcer that won’t heal because of the absence of the lvc 

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  • Sandy_123
    Sandy_123 Scope Member Posts: 55,793 Disability Gamechanger
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    Hi @jackjack2511 welcome to the forum, I don't personally have your condition and little knowledge of it, someone may have more insight on the forum with same condition. Have a look around and join in.
  • chiarieds
    chiarieds Community member Posts: 16,173 Disability Gamechanger
    edited September 2021
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    Hi @jackjack2511 - & welcome to the community, Jackie. My understanding is that a congenital absence of the inferior vena cava is quite rare. We have had a couple of members join with this, however, but unfortunately I don't know if they're still active. Please see: https://forum.scope.org.uk/discussion/68712/an-absent-inferior-vena-cava?_ga=2.264379018.421942884.1628719921-462006494.1594920585&_gac=1.259971448.1631021529.Cj0KCQjwm9yJBhDTARIsABKIcGZrOWLlYM8_vq1kITYnrSbR0w2-5sMqnljvIp96wzctLvBgDPJt6HsaAnTXEALw_wcB
    As far as ulcers go, & depending on where it's situated, i.e. if it's on your leg, which I presume, I have had problems with ulcers before; one not healing for 3 months. Then I got probably an older & wiser community nurse, who said the old-fashioned remedies are the best, i.e. iodine. Please see:  https://medicaldressings.co.uk/inadine-iodine-dressings/    I have also used this as a preventative buying it myself when I felt another ulcer was developing. Perhaps worth discussing this with your medical team/nurse.
  • jackjack2511
    jackjack2511 Community member Posts: 3 Listener
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    Morning Sandy and thank you for your comments.l do understand how much it helps to have a community nurse who thinks outside the box..
    l did come across one who went away after coming to change my compression bandages last year and saw how much pain l was in when she was cleaning out the leg ulcer she came back and said lve a plan.
    she asked the doctor to prescribe numbing cream what a difference my god ,and she was able to clean the ulcer properly and that kept infections down to nearly zero,l now use this wonderful cream twice a week l will never be able to thank her enough.
    however she moved on so lm back to a mix of good practices and lazy practices 



  • jackjack2511
    jackjack2511 Community member Posts: 3 Listener
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    I’m going to get my leg done today l will ask about this lm always open to new ideas and things to try because one day l might hit on something that heals my ulcers
    so thank you again
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