… Venogram tests, or the equivalent are essential for diagnosing Klippel-Trenaunay Syndrome
At one point in my medical care doctors recommended my varicose veins be stripped. This surgery would reduce the number of stasis ulcers I was having. Fortunately for me, I personally paid for a consult with doctors at Scripps’ La Jolla Medical Clinic. Yes…. , I had insurance, but the Medical Review Committee from my medical group thought going outside of network wasn’t necessary. Mind you, their Vascular Surgeons were the one’s recommending surgery. I credit my General Practitioner for whispering “Scripps” in my ear. Well worth the $250 and a trip to San Diego area.
How so? The Scripps’ doctors took one look at me and pre-diagnosed me with Klippel-Trenaunay Syndrome. One of them, the Vascular Surgeon, stood about a foot away from me and said, “In no uncertain terms you will not let them do surgery without having a Venogram done first. You, my friend, are at serious risk of losing your legs to the inexperience of your doctors.” The lessons as to why his statements were factual came shortly thereafter.
Imaging studies showed I had a combination of no deep veins in the right leg and incompetent deep veins in the left leg. As such, vein stripping surgery was eliminated as an option to resolve chronic and degenerative circulation complications due to Klippel-Trenaunay Syndrome. As the doctor put it to me after the tests, had anyone done any type of surgery to strip or close off any veins I would have lost my legs to “surgery-caused” amputations. It turns out that as bad as my peripheral veins are, stripping or closing would mean I would have no circulation at all.
I recall the doctor musing, “you would not have gotten off the surgery table before we realized our mistake.”
In many respects there were precursors to this potential disaster. I had related problems with prescription compression stockings which were worn from age 18 to 40. These stockings made my legs burn with the pain beyond anything I could handle. It turns out these compression stockings were so strong they restricted the only return pathway for blood going to my feet. Sadly, my childhood and early adulthood doctors had no K-T experience and regularly accused me of overreacting when I complained about stocking caused pain. Oops! I now know these doctors made the same mistake the earlier Vascular Surgeons made.
Do not fly blind with Klippel-Trenaunay, get your veins mapped as early as possible in your life.
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PS – I had an allergic reaction to radiologic dye many years prior to the Venogram tests. So preventative, they had me on mega-dose steroids before the procedure. All went well.