I was born without a inferior vena cava,but my body made lots of extra little veins to compensate ,however all these little veins are now gorged and getting backed up
Anyhoo ld love to chat with someone who has heard or has this
Or if anyone had any ideas because of my condition l have large leg ulcer that won't heal it's been 4yrs
Sorry to hear about your problems. Have you been back to see a vascular surgeon? If you haven't seen a specialist recently, then it might be worth asking your GP to refer you to a specialist vascular surgeon for a consultation to see if there is anything they can offer you. Even if there wasn't anything a few years ago, things change and new procedures are developed so worth asking.
Hi earthwitch.it has been a while, but as luck would have it of sorts,lve just moved from a city to a town and from the start the care has been better and my 1st vascular app has just came in ,in aberdeen the vascular surgions were very much nothing we can do because you don't have a inferior vena cava,
But like you l always think they come up with new things it just takes one open mind
So let's see what a fresh pair of eyes and minds can come up with.....
I have sent you a personal reply. click on the bell above.
Hi, sorry to hear of your problem, My Femoral veins from both legs were cauterised just after birth so the return from my legs had to find it's way through the smaller veins, causing problems with Varicose veins in both legs, Real big ones as thick as two inches across!. I have to keep my weight under control, and stay slim, which given my other dietary problems is easy, but I have had a few ulcers which do take time to heal. My knees suffer from osteoarthritis, but I still walk at least three miles a day, with a pain around 7/10 I also have very cold feet, but wear surgical stockings to hold the veins in.
I would think your problem being nearer the heart would be more difficult to manage, so maybe a good vascular surgeon could sort out a bypass of some sort. Big Job and really depends on what you want from your life. I hope you sort something out, Good luck
Hi joint pain,sadly there is no operation to replace inferior vena cava as for Bypas
it's not an option ,the veins are full and gorged and have made there way up to the start of the rib cage ,try not to think about when they get higher
I would like to get in touch with you in regards to your condition. We just found our that my son also was born without a inferior vena cava.
My daughtwr just got diagnosed with agenesis IVC and dextrocardia and situs inversus totalis
Hi Jackie, I stumbled on your post here looking for info about my nephew Dx with same condition. Can you detail what has happened in the last few years since your initial post? I would greatly appreciate it!
I also have no ivc, it clotted and was absorbed by my body. And now my common left and right iliac vein are clotted and hardened.
Hi all
I would like to add that at the age of 47 I too have no IVC after recent Radical Nephrectomy with Vienna cava extension
This situation has left me extremely unfit in the use of my legs, the vascular surgeon has ensured me that in 12 months time I should be as good as Ill ever be, relying on other blood vessels to grow larger to compensate for the now tied off IVC.
So after 8 weeks of healing time, I am now Hiking and riding a bicycle on flat ground at half normal speed wearing the stockings and on blood thinners, the general fitness is pretty good, as I also got back into the Kayaking at full speed in no time, so the upper body functions as per normal.
The walking and MTB riding however are very hard work, constantly pushing through the pain, some days the sciatic nerve pain runs from spine to the back of the heal, along with increase of blood pressure and increase of respiration, I can feel the legs swelling quite fast if walking say even one flight of stairs, at this point I must stand still and wait for the blood to drain away and the heart and respiration's to return to normal before continuing.
I try and walk 10 km and ride 20 km 5 days per week, starting on the flat trails working my way weekly towards increasing the grade of the terrain.
Every week there is an noticeable and measured improvement.
I feel as though I am heading in the right direction and may even be able to run again, well loosing a bit more weight will be a big help.
Hey, my name is Katherine I was born with no inferior vena cava also. I found out a few weeks ago due to a blood clot in my leg. I just left my doctor's appointment and they said it's extremely rare. 1% of people are born without a IVC. please contact me. It'd be nice to speak with someone about it. Not to much information to go off of.
Hello Katherine12..I too was born without an IVC, I am 61 and take blood thinners and Hydrocodone for chronic leg pain. I still get blood clots but mostly superficial. Recently my left foot, mainly toes have gone numb and use a cane for balance. Seems the older I get the condition worsens. The surgeons I have gone to are not sure what to do with me and don’t want to make matters worse by trying bypasses. So at my age I have decided to live it. If you are young and are active in sports and such, it may be to your advantage to try what the surgeons suggest. If u have a good doctor and he/she are honest with you, like mine were, then taking meds like Eliquis and pain meds are not so bad if done right. Quality of life is very important.
Wow thank you for responding. I will absolutely keep that in mind. I feel so alone with this, it feels good to read someone else can give me a little insight. I have extreme pain in my legs, they feel very tight. I go to the gym about 4 times a week so hopefully that keeps things moving. The doctors I've seen don't have to much to say but to keep active, wear Ted socks and to elevate my legs at night. Do you know of any articles. Something I could get some more information about it from? Nice to hear from you. Thanks again. Sorry for the late reply.
I am currently in the hospital as we speak and just got diagnosed with no ivc (since birth) due to multiple blood clots in my leg !! I’m only 23 !!
Yes yes same here! It was such a weird thing for the doctors to tell me that also. I'm only 30 and I've had it from birth as well. How are your legs? Do you get varicose veins? My legs have them and it was my biggest sign to go in. Hopefully they put you on blood thinners for your blood clots. I have a blood clot in one of my legs and they won't give me blood thinners due to it being an old clot. It's scary. Hope all is well. Thank you for replying. I need all the support on this one.
Hi lads, same here . . . I am 26 years old, and I was born with torn stomach - gastroschisis (didnt evolve as it should) which included of not having IVC as well... My stomach went under couple of surgery's and it went more or less good. I was left with a big belly scar, but I lived pretty much the most normal life as my twin brother had, and I didnt know anything about not having IVC untill I started to notice varicose veins at the age of 12, they began to expose on my legs and since then they are getting bigger, more painful and bringing more problems.. When the problem became a bit more serious at the age of 16, I went to multiple surgents and doctors untill they found what the problem is ... Not having a IVC... They told me that my other veins took responsibility to take care of bringing the blood from legs to the heart, and since they are under big pressure over that task, they are getting wide and varicose.
They told me that there is no particular solution to this problem, and every try to touch it could be fatal. Their advice was to wear compressive socks, to live as healthy as I can and that I'll be able to live my life more or less normal as much as I could do.. I lived pretty much normal except for the estetic part of the body, cause varicose veins and scar stomach doesn't look pretty, but I didnt have any major pain or psychical problems untill 2 - 3 years ago, when I started to feel that I cant stand as much on one spot, that I can walk up to 10 000 steps before getting tired, itchy and painful, but at the last couple of months, I have a feeling that my feet is burning when I'm walking and driving car, or even at night when I go to sleep.. my condition is not the best, sometimes I regret of not taking care more for myself, but I was stubborn and not the greatest example of living the healthy lifestyle cause I felt like I'm normal as much as the other kids of my age, which I wasn't... Soon enough I'll be 27 and I feel like I have legs of 80 year old guy... So I just wanted you to know that you are not the only one, and that there is someone who understands your thoughts and everyday's pain.
Everyday I am wondering how bad it is, will my heart and this weird sistem stop working one day, will I get into wheelchair, will my legs be amputated one day etc . sometimes I feel it gets me more into trouble in my psycho than in psychical way.
This disease is not treated as hendicep, but I feel somethimes that I am one of them. But to remind you - every single story is relative and two sided. You can cry and ask yourself and God why yourself? But when I look at the mirror and see where I've been and how many good moment's I've been trough, and then when I notice someone in a wheelchair since birth, you can be greatful as well. Everything is about the perspective.
Feel free to ask me anything. Hope that u r all good 
Ante from Croatia
Hi all,
Another 26 year old who has just found out I have no IVC! Came out of hospital in November after experiencing multiple blood clots and PE. Otherwise have been relatively healthy up until this point in my life and had no idea of my condition. I wanted to find some more out about my condition and how it might affect me in the future as I haven't had much information yet from doctors.
So far my leg has improved dramatically since being on Rivaraoxaban, when I came out of hospital I wasn't able to stand for more than 5 minutes and now I feel I can walk for as long as I like. But my leg is still quite swollen! And naturally swells up after exercise due to lack of drainage.
It is nice to find other people with the condition and discuss it, what with it being so rare.
I have a follow up scan in January so hopefully the radiologists will see some improvement!
My 14 year old grandson is in the hospital tonight. They have just advised his parents that he has a congenital defect and has no inferior vena cava. In addition they are treating a blood clot. So many questions! Where do we even start for answers? Can one live a full life with blood thinners and no inferior vena cava? Are there surgical reconstruction options? What is the prognosis for a 14 year old? Where are the centers for excellence for treating this rare defect? Can anyone point me to a source for information. Help please.
Hi,
Decided to come back to this thread! Hope everything is ok with your Grandson?
After being diagnosed around 18 months ago now, I can say I’ve been back to “normal” for around a year now.
As some newer posts have said, unfortunately not much doctors can do to in terms of the condition, other than manage it with anticoagulants.
I also saw a surgeon about my condition who assured me that right now, a bypass would not be our best option due to the risks not outweighing the benefits (and artificial veins tend to clog up and require changing/maintenance fairly regularly). My body had been running functionally without my IVC for 26 years, and has adapted with my Azygous and Haemazygous veins enlarging to compensate for the lack of flow.
It is definitely scary when you first hear about it, and I can’t imagine how a 14 year old must feel. However my advice would be to look at it from a positive perspective, now I know about it I can manage it more effectively - actively choose a healthier lifestyle, I now know any signs to look out for when it comes to potential clots (rather than being a typical young man and saying “I’m sure I’m fine” and not seeking any medical help).
As I’m sure you are aware by now you can certainly live a normal life on blood thinners, the biggest issue I’ve had is remembering to take them!
I hope you’re all safe and well
I was also born with congenital absence of the IVC I’ve been going to a vascular Surgeon
I also was born without IVC. Unfortunately nothing can ever be done. Pain management, compression stocking, blood thinners. There is a risky surgery to reconstruct, but very difficult to get a DR to agree to perform.
My husband has a rare condition called Klippel Trenaunay Syndrome which affects his right leg. Today I found out he doesn't have an IVC. Explains pooling pain venal clogging and ulcers.
Hi Also have no vein cava inferior. I am 31. Can anyone give me any testimonies, people who are above 50? What is your current health situation. Thank you for helping.
Hi, I have no inferior vena cava. I had my first clot at 17 and have had six DVT since,I gave birth , had major surgeries and no one ever looked further to find out why.I got the name of a In the same office building I worked at and made an appt. to see him. He gave me the diagnosis of absence of inferior vena cava found thru a MRI, I was in my 40's and had already lived thru 6 clots. I am now 58 and wonder what more can I do. I am considering a reconstruction procedures but have always been told not to. I am on oral pills , get surface clots and have a set of compression boots I wear for an hr nightly. Anyone have thoughts???
Dear JackieWann....I am sorry that u were born into this miserable situation. It is unfortunate. My intro to the same class was caused by a IVC FILTER. It clogged so much that I wasn't getting any blood flow thru it my veins cava wasn't being used and the result became it disintegrated completely and doesn't even show up on MRI or any type of scan. So like you my body is making collateral veins which aren't designed to carry the blood amount that my body requires so there will be a burst someday but no one can tell me when. Right now I'm suffering from night little circular ulcers on my left foot which has me laid up in bed now oh they'll go away in about a week but I can't wear a shoe I can't walk on the foot hardly . For my question for you is have you heard anything as to how long the body will make those collateral veins? I'm not scared to die I just don't want to not yet I'm a 62-year-old x athlete so I was in pretty good shape with all this I've been battling blood clots since I was 25 but anyway any information anyone can give me I'd appreciate it thank you
Is it really bursitis? Where do I go next?
Expat Pat back on line!
Heart rate is high and feels like it skipped a beat
Pain relief medication for cronic lower back pain, and Sciatica.
