Superior Vena Cava Syndrome Visual
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- Опубликовано: 29 авг 2024
- I have a superior vena cava obstruction caused by scar tissue around pacemaker wires inside my veins. Three months ago I had a laser lead extraction and angioplasty. As you can see I am still symptomatic, but much better than before the surgery in October!
My SVCO symptoms include face and neck swelling, distended face and neck veins, shortness of breath, brain fog, facial/eye pressure, and skin color changes.
It was hard for me to find info online about this pretty rare condition, which is why I'm sharing my experience.
The most valuable thing I can say about my situation is...
Philippians 4:13 “I Can Do All Things Through Christ Who Strengthens Me”
I like this explanation I found online by Mike Cynar-
God has never promised that all of our earthly problems would be solved or taken away.
Here, Paul is actually saying that even if he is suffering, or in need, that his joy doesn’t come from solving those problems. He’s saying his joy comes from knowing Christ. Even during bad times. While we all want our problems solved, the lesson here is not about having our circumstances fixed. It’s about learning to lean on Jesus and depend on Him, even if the circumstances don’t get better. It’s about letting Jesus be the source of our joy.
Life hurls all kinds of problems our way, and if our joy is found in earthly things, we’re going to be in for an emotional roller coaster ride. However, if our joy is found in Christ, even when life hit’s rock bottom, we can still find joy. That’s the meaning of “I can do all things through Christ who strengthens me”.
Thank you for sharing your video. It really helps me as a nurse who has not seen this.👍👍😃😃
thank you for sharing. I am a medical student preparing for my first round of boards before I start clinicals. It's super helpful to see real examples of these things we read about to help recognize it on an exam and in the future :)
Thank you so much for sharing this!!!! I'm in the hospital, and they discovered that I have SVCS ,too, from a blood clot in my SVC that has apparently been here for ages - thanks to an old port-a-cath. I have a bunch of things, including SLE (aka Lupus), Antiphospholipid Antibody Syndrome (another autoimmune disorder), and this one cases me to have "sticky" blood and clot a lot. So despite being on a blood thinner this whole time, it apparently failed, and now, I have a BIG BOI clot with its own vascular structure. It broke off some chunks, and they caused some PE (clots in my lungs), which is how I came to be in the hospital this time. That's also how they ended up figuring out the SVCS.
I have insane new veins that quite literally popped up on me - my face (especially my R cheek, eyelid, and temple) and BIG ones on my abdomen and my breasts(both to some degree, the R side being worse) and my chest area, etc.
I've been pestering my GP for about a year now about the one on my abdomen, as it's getting bigger and bumpier.... and I HAD noticed my face being discolored and SWOLLEN, esp under my eyes, when I woke up (despite sleeping with my head raised slightly). I thought that was from my kidneys, though, as I also have lupus nephritis. My GP ordered an ultrasound of my abdomen, which obvs showed nothing, as the clot/blockage is in my neck, but didn't do anything else.
I think it's awesome that you are helping to show people (medical pros or not) what this looks like! I copied you, and did a video to see, and I get extra veiny in my face, turn purple, too, etc... which I didn't fully realize the scope of until now! Thank you again for sharing your video!
Is your SVCS from the pacemaker(s)?
As mentioned, mine are from my port (which, in case you don't already know, is an implanted "hub" (hence the name "port" lol) that they access for IVs, labs, etc.
Alyssa, you have so much going on, God bless you!
Yes, my SVC obstruction was from scar tissue around my pacemaker wires. I have EDS, Ehlers Danyos Syndrome, which is a connective tissue disorder. It affects people differently. I have extra thick scar tissue and I make significantly more of it than most people. I made scar tissue around the pacemaker wire going into my heart, and that’s how I made my SVCO.
I pray your clot resolves! I am going to check out your video :)
You are so brave for sharing this scary condition. I enjoy having P.O.T.S, although not the same thing as SVCO, does keep me on my toes! I truly admire your strength, and am rooting for your continued recovery. Finding the positive in the negatives is so important and you sure have a way of doing just that.. God Bless You, always.
I have SVC syndrome from a chronic blood clot . Dr said I’ll have be on blood thinners for the rest of my life . But likewise I’m always short of breathe and can lay down flat or bend over.
Perfect neck vein
Hi Cindy! I am having this same issue with an SVC occlusion and I would like to talk more with you about your experience. Can I email you somewhere? I’d appreciate it!
Why is it bad laying down?
My vein is blocked with scar tissue so blood doesn’t easily flow/return through that vein. When I lay flat and gravity isn’t helping the blood flow, it can’t get past the scar tissue. Which then exacerbates the blockage symptoms like my face turning purple, veins protruding, face swelling, headaches, shortness of breath, brain fog, vision issues, etc.
@@CindyHeigl how was it diagnosed?
@@southern842 I had several tests including an echocardiogram, angiogram, and venograms with contrast.
@CindyHeigl gotcha. Sorry to hear you're battling this. I have suspected bilateral venous tos but it seems to mimic svc syndrome more so in my mind due to the systemic nature.