Which would be this:
Both of my hematologists strongly were against this procedure. Aside from being very costly, they both stated that it is a highly invasive procedure, has potential for many negative reactions, and for basic DVT situations, venous insufficiency, incompetent vein valves, postthrombotic syndrome, and related that the venous ultrasonography is more than accurate for those situations.
My current hematologist (and these two are by far the best in the area) previously advised that she reserves the "venogram" (venography) for serious non responsive DVTs, a very serious peripheral vascular disease condition, and situations where the ultrasonography reveals a much more serious problem... (none of which she feels fits in my situation - nor did the first hematologist). In fact, neither would - absent any further symptoms even consider that option (I didn't recall its name until you mentioned it).
It was pointed out that of the 6 primary symptoms for CVI (hyperpigmentation - to invariable reach to the top of the calf and down into include the feet, phylogenetic lymphedema, varicose veins, chronic swelling of the legs and ankles, itching / burning, venous liberation), that I only have two. And both these symptoms had problems as far as they were concerned. While the left leg hyperpigmentation is quite noticeable, it has been there (with zero swelling) for almost 9 years, with the swelling coming on only with the onset of the DVT (and only on that leg that had the DVT... zero swelling on non DVT leg, which did develop some very mild hyperpigmentation - 20% color intensity, 15% area - as the DVT leg... and also hyperpigmentation prior to the DVT). Additionally, I had the impression that they did not want to butt heads with the NIH Research doctors who pretty confidently attributed that initial, very quickly developed hyperpigmentation to the then very highly elevated cortisol... and that this is not a reddish-bluish pigmentation, but more of a slightly pinkish "bronzing" pigmentation.
In fact, each hematologist has declined to order even any more ultrasonography testing as the last two such follow-up ultrasounds have showed no abnormal blood flow, no obstructive blood flow, etcetera, etcetera. And I'm not sure how you go about convincing them otherwise.
The current one indicated that she believes that the hyperpigmentation is a result of the Pseudo Cushings and that the swelling is just an edema condition that is slow in responding (one visit it is thinking about ordering me stronger compression stockings - still not done, another visit it is doing phlebotomies to reduce hemoglobin / hematocrit levels - which have started, etcetera).
In the regard of treatment, what would your thoughts be towards Intermittent Pneumatic Compression?
Any hints (although without a well documented letter of medical necessity, I am not sure that the insurance company would approve a venography procedure anyway!)???
Well, if you think of anything else or get a chance to maybe run this past an endocrinologist specialist who is very familiar with hypercortisolism and can update your "internal database", let me know. I have a visit with the hematologist and my regular doctor both on (different) visits Tuesday and plan on asking for some detailed updated blood work as well as some more in-depth discussion with the hematologist.
In (temporarily closing), how about "Shamberg's Disease"? My wife's father had (unknown to me) this same type of thing from his late 50s until his death at age 82 (with edema the last 10-12 years due to water retention). My grandson - who lived with us for 3 or 4 years - says that he has a friend whose grandfather has this same visual symptom (no swelling as no DVT, etcetera)... The common denominator is that both have been diagnosed with "Shamberg's Disease"!
Just a thought, though looks like it can on my be diagnosed via a mild biopsy (which would like me being referred to a Dermatologist).
This is VG pic.
The hyperpigmentation on my left leg is darker, but does NOT go to ankle OR foot, nor above mid calf on left leg, and just a strip on front of shin on my right leg. Swelling on my left leg just goes down to the ankle (from bottom edge of calf). No swelling on right leg. Zero.