Connect
Interrupted ivc and deep vein thrombosis
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.
Like
Helpful
HugInterested in more discussions like this? Go to the Heart & Blood Health Support Group.
Connect
I’m so sorry to hear this about your grandson. I do not know about any university’s having a specialized center. Dr. Erin Murphy and her husband Dr. Gregory Stanley might be able to recommend someone in your area? I can tell you there IS hope! Duke could not help my daughter but Dr. Murphy did. I wish your grandson luck with his surgery tomorrow. Compression and anti coagulants are first steps. But the stent surgery could be an option for a more long term solution. With Covid they might could do a virtual consultation? Wishing you the best!
-
Like -
Helpful -
Hug
1 ReactionThere are many of us out here that will put him in our Heart and Prayers!
Sundance(RB)
My son and I went to Children's Hospital of Boston, they were very helpful, one of the problems that we have locally - no one understands this anomaly and wants to operate before they know the condition. We have a local hematologist that we work with that works with Boston.
This has been a long journey and will be the rest of his life but having the right doctors will help and relive the stress of not knowing.
Best
Erin Spera, RN,MS,CPNP
Nurse Practitioner
Department of Surgery
Vascular Anomalies Center
Boston Children’s Hospital
Hi Erin @interruptedivc, Thank you so much for the update on your son. So glad the doctors were able to help and relieve the stress and anxiety both you and your son were feeling. You will notice that I took your personal information like your phone numbers and email off of your message. We do this to protect you from spammers who may take your information from this public site. If you would like to share your personal information with someone specific, I would encourage you to send them a private message by clicking on the users name and selecting the private message option on their profile.
Erin, what is the next step for your son?
-
Like -
Helpful -
Hug
1 ReactionThe procedure to clear two blockages went well. (See diagram). A very large amount of clotted blood was removed in order to restore the flow. Thank you all for your concern and prayers and information. See the Hematologist today so we will ask about "factor five".
My 26 year old son was diagnosed with the complete absence of IVC when he was 19. It has been 7 years with no further complications/issues. A couple weeks ago he was having a lot of pain and went to the hospital. Because of COVID we weren't able to go inside. They discovered he had DVT again. Last week they surgically removed the clot and confirmed all of the clot(s) was removed and sent him home. They are doing everything possible to send him home rather than at the hospital because there are no rooms available.
10 days after surgery, he started getting pain again and was unable to walk. He went back into the hospital and they said he now has several more clots. We haven't been able to meet with the vascular surgeon and the information his wife is relaying to us is difficult to understand. The surgeon was discussing with them the prospect of creating a new IVC including new paths. I cannot find any information on creating a new IVC that isnt combined with tumors or just connecting segments of IVC that were started/not fully formed.
We are several years behind you. My 14 year old grandson was recently diagnosed with absence of IVC. It was discovered because of two major blood clots in his upper legs. The clots have been removed and he is now on blood thinners and compression stockings. We are looking to find whomever is the "expert" in treating this rare condition. A second opinion never hurts. I have not yet found a case of creating a new IVC, although I do wonder if someone is researching growing IVCs with stem cells or using cadaver IVCs to replace that that is missing. If I discover anything useful on the subject I will post it as well. Best of luck in your search. Your son is in my prayers.
:
Hi @paulandcrystal and welcome to Mayo Clinic Connect. I have found that it is definitely rare for surgical intervention on an absent IVC to be done as there aren't a lot of cases documented, but I did find two that were mentioned in the Med Scape article and they seem to be successful.
https://emedicine.medscape.com/article/1933035-treatment
Can you ask your son or daughter in law if you can sit in virtually on the consult with them to understand what's going on? I know how difficult it is to have an adult child that you still want to nurture and care for, but they are old enough to make their own decisions.
Hi, Wish this site/discussion group was available in March 2017! My daughter was 19 had just started on birth control pills in January took a road trip home for spring break an 8 Hour Drive and on her return to college, her entire left leg had a blood clot from hip to ankle. She was admitted to the hospital for four days three days in ICU went to do a procedure and we were told she does not have an IVC. She is a runner 5’3 110 pounds and a tough time recovering. Her pain started in the lower back thinking she pulled a muscle when running, the swelling in her leg and the pain continue to get worse she went to the college walk in clinic and they sent her immediately to the emergency room. Long story short she went to hematologist, vascular doctor, and a specialist in Alabama we traveled far to have her looked at and he discouraged and did notRecommend an IVC rebuild. She was on Xarelto for two years and five months after she stopped taking she had her second blood clot. Her new hematologist ran mini test and it did come back and diagnosed with factor five Leiden so not only does she have a hereditary blood clot disorder she does not have an IVC. She was told she will need to be on blood thinners for life and when she decides to start a family will be high-risk and on Lovenox therapy before during and after. As of now we have been lucky and not too many complicated issues but always in the back of our mind. -Amy
Hello @amymoon. This group is helpful to know others dealing with similar issues. My daughter was 18 when the surgery was performed. She had 30 stents implanted that recreated the IVC. Even so, she has been told by her vascular surgeon Dr. Erin Murphy at Sanger Heart and Vascular in Charlotte, NC that she too will be on Eliquis, a blood thinner, for the rest of her life and will be high risk for pregnancy with Lovenox therapy if/when she tries to start a family. I attached an excerpt from Dr. Murphy's documentation of the procedure in my original post from July, 2019. I highly encourage anyone to see her for her opinion. 704.373.0212. I believe due to COVID they are doing virtual appointments. We were told by Assistant chief of vascular surgery at Duke University they could not help us. This is a very specialized area and not common practice. I hope your daughter continues to do well. Just wanted to mention Dr. Murphy -another opinion couldn't hurt. It helped my daughter's quality of life, she and my husband even did a cross country drive (with compression stockings on everyday), she drives and can walk and stand normally/long periods of time.
Best regards,
Marshae