Has anyone had this procedure? Did it have any effect on your EM? A vascular surgeon has recommended ablation for me after an ultrasound study of my leg veins revealed partial blockages in my valves, resulting in backflow of the blood. I’d originally been referred to them and had the vein study because my current rheumatologist doesn’t know why I get red, swollen, painful toes and is trying to figure it out. His predecessor thought I had EM. The current doctor doesn’t know anything about EM and is casting about for answers. I’m thinking if what I have is EM, the recommended procedure won’t affect it, because as I understand it, EM is not a circulatory/vascular issue.
While the direct cause of EM may be multifactorial, symptoms do present through the vascular system. The National Organization for Rare Diseases states:
The exact underlying cause of erythromelalgia is not known. However, evidence suggests that it results from abnormalities in the normal narrowing (vasoconstriction) and widening (vasodilation) of the diameter (caliber) of certain blood vessels, leading to abnormalities in blood flow to the extremities.
In erythromelalgia, additional evidence indicates that ring-shaped muscle regions (sphincters) of certain blood vessels that control blood flow from small arteries (arterioles) to capillaries (i.e., precapillary sphincters) may be abnormally narrowed while “arteriovenous shunts” are open. (According to researchers, blood flow through skin capillaries primarily provides necessary oxygen and nutrients to cells. Arteriovenous shunts, which are blood vessels that directly connect certain arteries and veins and thus bypass the capillary network, are thought to play a role in regulating temperature.) Constriction of some precapillary sphincters while arteriovenous shunts are open may lead to increased total blood flow yet decreased transport of oxygen and nutrients to cells, resulting in a simultaneous insufficient oxygen supply (hypoxia) to and excess of blood (hyperemia) in affected skin. The presence of hypoxia may in turn trigger increased, localized blood flow to skin regions, thus exacerbating pain, heat sensation, and redness.
Venous insufficiency is one of the most common problem in healthcare, especially among people over 50 years of age. EM, on the other hand, is very rare. I see your age range as 60-70. If healthy people in your age range had a doppler ultrasound done, venous insufficiency to some extent would be found in nearly everyone (heck, I’m in my 20’s and I had mild venous insufficiency on ultrasound and I’m very healthy other than my EM).
Bottom line is that the fact that you show venous insufficiency could but also could not be a cause for your EM. The main concern that I would have with getting the endovenous ablation done is that it would cause a substantial stress response from your body. With chronic issues like EM, stressful life events (medical procedures and other physical and emotional stress) seem to be the most common cause of the initial precipitation of the disease. I would be worried about your EM worsening from the procedure due to this increased stress response. However, if it doesn’t work, it is another thing to check off of a differential diagnosis list which would be useful.
Liebe Rachel, tut mir so leid. Mein Kind leidet seit 10 Jahren in Österreich (MozartLand) und wir finden ebenso keine Hilfe. Viel Kraft für Dich und uns alle !!! Wir sid noch immer zu selten.
I went to Mayo Clinic in Minnesota and saw Dr Davis and other doctors. Besides EM I have deep vain insufficiency in my calfs. I saw a vascular specialist who said they had no surgery to fix it. They recommend compression socks, walking and elevating feet above heart for 1/2 hour every 2-3 hours also watching sodium intake.
My left foot is swollen to some degree 24/7. I live in Southern California so for most of the year it’s very difficult because of the heat. My feet are bright red all the time. When I get a flare they get hot, but they are already red.
Hope this info helps you.