K-T Syndrome: A Bowl of Spaghetti

One of the most revealing doctor presentations at several of our Rochester Bi-annual K-T Meetings was offered by Dr. Burroughs. She is an Intervention Radiologist who is in many respects a pioneer in the treatment of K-T. Her work allowed us to see the “unseeable” and introduced techniques that carefully treat what inexperienced doctors seem to guess at. I have no way of knowing whether her work is considered medical legacy now, but it is very satisfying to see other doctors speaking and showing their work which parallels the Doctors. What is this magic come to life?

Looking at our affected areas with the naked eye we see one or many of these things: mosaic colored skin; veins popping out of the skin (varicose veins); fatter/longer legs, arms and/or trunks (hypertrophy); lymphatic blisters (blebs); spider veins; some skinnier/shorter legs (hypotrophy); open skin sores (stasis ulcers); and body parts that develop erratically, if at all. A big part of our human makeup is to focus in on what we see and allow this to become our focus, our reality. The Doctor permanently changed this natural bias for me. Let me explain.

Dr. Burroughs showed us pictures of the peripheral and deep veins of K-T patients. These weren’t perfect color Kodak moments, but even in black and white these revealed why we suffer so and why surgical procedures that target a single vein or even a couple of veins are so likely to fail overtime. Our Circulatory System is nothing like our parents or the pictures we imagine based on high school biology class.

That wonderful picture we all saw in high school biology that shows our arteries and veins looking like a perfect tree with sensible limbs and branches just isn’t us. Think more like a bowl of sticky spaghetti which begs to come out in clumps and not one noodle at a time. Imagine now that when an inexperienced doctor surgically removes or closes one of those irregular noodles – another couple of dozen which were “protected” by that bad noodle now become the primary pathway after surgery. This stark reality means that we see “new” K-T veins when in fact these malformed veins have been there all along.

I can’t speak often enough or loud enough. Please ask your doctor how many K-T operations they have done and what the results were before agreeing to going under the knife. It’s not even a matter of now many they have seen. Ask them if they have an Intervention Radiologist on their team and if this doctor will be the first to examine and operate. Ask them to show you those wonderful black and white pictures that only Radiologists can produce before agreeing to medical intervention. K-T Syndrome is a BIG PICTURE disorder and underestimating its pervasiveness is unwise.

What we see with the naked eye is by far a very simple representation of our actual disorder. Fight like crazy to get a Case Manager from your insurance company right now because our syndrome is not something to be handled like the common cold or even a heart condition. Our medical journey is lifelong and demands an early road map which technology provides now, albeit very expensively.

I highly encourage you all to fight like crazy to get to experienced K-T Surgeons and Intervention Radiologists on your approved medical team. Pick up the phone and call the Mayo Clinic in Rochester, the Boston Children’s Hospital, and/or the Cincinnati Children’s Hospital and ask for every possible business solution to get their K-T team of doctors on your team. I’m betting that if being in their facility isn’t practical, they will seriously consider consulting. If you have had similar experiences to those I express here, that is exposure to multidisciplinary teams with experience in the advanced treatment of K-T Syndrome, then please post here and brag about that team and speak to their techniques.

Our community is at critical mass now. We can help each other by telling our stories no matter how routine or extraordinary. As always, thank you to this amazing extended family. The strength and future of K-T treatment is largely due to this community, its pioneers and its contemporary participants, advocates, and medical professionals.

2 thoughts on “K-T Syndrome: A Bowl of Spaghetti”

  1. Our interventional radiologist has been instrumental in helping deal with our daughter’s treatment. I will be forever grateful for the time he takes to learn, care for, and treat ask of his patients. He explains what is necessary against what is cosmetic. He expresses when he is pleased with an outcome or when he feels his treatment isn’t effective and something new needed to be tried. I trust him with my daughter’s life, as I do all of the physicians at Cincinnati children’s. I appreciate you telling this aspect add it is so important for these puerile to realize they aren’t dealing with ” normal”.

    Like

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