VM – Vein Malformations [Lead Sheet]

bringing in the total picture, the ISSVA Diagnostic Classifications

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What would you do if these people were your patient? Your child?

SYNTHESIS – ANALYSIS – FEEDBACK – EDUCATION

work product is a personal perspective

Vein malformations come in all shapes, sizes, and disfunctions. Additionally, there are many different types of veins affected. Some discretely so, others in combination with each other. This includes the deep veins, superficial veins, peripheral veins, and perforator veins. Vein malformations include those that go nowhere and act as dead ends, those that grow to large for their valves to work properly, those to small to carry “normal” loads, those that are duplicates, those that go missing.

The collective possibility of complex, mixed malformations seems endless. The bottom line is that our vascular system is compromised and doesn’t return blood to the heart properly. Blood then pools in our lower extremities, extremities can swell from vascular congestion, skin tissues don’t get adequate nutrients and die showing up as stasis ulcers, venous stasis ulcers. The latter are also known as open wounds.

Malformed veins can be weakened veins whose vessel walls don’t handle the volume of blood pooling in them. These look like long balloons ready to pop – medically called varicosed veins. My vein malformations were not visually present at birth and quickly became visible by 9 years old or so. Today, they are obvious.

My take is that vein malformations are the least noticed and the least addressed in a proactive way. They also are far more problematic than capillary malformations. Early radiological mapping is the key to a better life and physical health. A multidisciplinary Vascular Team with heavy experience in Congenital Malformations would be beneficial.

My my experience, “vascular pain” is real. By my doctors account and my wise father’s account it’s not the vein signaling pain. It is the malformed, dysfunctional vein putting pressure on surrounding tissues which in turn signal pain. I can’t think of any reason to disregard this pain. Pain can be signaled by infections traceable to very poor circulation in the area. Dying tissue hurts, and signals early on. Enlarged veins, particularly those with dysfunctional valves put pressure on surrounding areas and these signal pain. We need to let our doctor know about these pains. We also need to hold the doctor to account when these pains make us dysfunctional, physically or mentally. At the extreme these lead to Cellulitis Infections which in turn lead to Sepsis. Some of my companions had this progression occur in a days time. Myself, my body tends to progress less quickly. The tough reality is that any progression to the extreme is very dangerous. Let your doctor know early on.

INFORMATION SOURCES

  1. OXFORD
  2. DermNet NZ – New Zealand
  3. ENTO KEY | OTOLARYNGOLOGY & OPHTHALMOLOGY INSIGHT
  4. RADY’S CHILDREN HOSPITAL – USA, CA, San Diego
  5. MOUNT SINAI
  6. BOSTON CHILDREN’S HOSPITAL
  7. MAYO CLINIC, USA, Minnesota, Rochester
  8. JOHN HOPKINS HOSPITAL – USA, Maryland
  9. UCLA
  10. NTERNATIONAL SOCIETY FOR STUDIES OF VASCULAR ANOMALIES

SUPPORT-RESOURCES

  1. NORD
  2. NOVA
  3. CLOVES SG
  4. PROS SG
  5. M-CM SG – Netherlands

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