Procedure's/Treatment Options and Definition of FAVA

Although I plan on covering multiple topics about my past and current struggles with FAVA, I wanted to start out with my past and upcoming procedures/treatment options. I included the dates and my age for each procedure I had done. All of my procedures were done at Boston Children's Hospital by the Vascular Anomalies team. I've had procedures done by 6 different surgeons and I highly recommend all of them including Dr. Ahmad Alomari, Dr. Steven Fishman, Dr. John Mulliken, Dr. Samantha Spencer, Dr. Arin Greene, and Dr. Raja Shaikh.

My current diagnosis is called FAVA - Fibro Adipose Vascular Anomaly but in the past mine was called a plethora of different diagnosis's such as a lymphatic malformation, venous malformation, COLA (congenital orthopedic lymphatic malformation) and lipovascular anomaly. FAVA is a newly delineated disorder of the lower extremities and was first published in medical books in January, 2014.


From an excerpt of the study titled Fibro-adipose vascular anomaly: clinical-radiologic-pathologic features of a newly delineated disorder of the extremity taken from pubmed.gov, defined FAVA based on the following results: "On imaging, the complex intramuscular lesions replaced muscle fibers with fibrofatty overgrowth and phlebectasia (dilation of the veins). The extrafascial component comprised fatty overgrowth, phlebectasia, and an occasional lymphatic malformation. The histopathologic features comprised dense fibrous tissue, fat, and lymphoplasmacytic aggregates within atrophied skeletal muscle. Adipose tissue also infiltrated skeletal muscle at the periphery of the lesion. There were large, irregular, and sometimes excessively muscularized venous channels and smaller, clustered channels. Other findings include organizing thrombi, a lymphatic component, and dense fibrous tissue-encircled nerves."

Past Procedures:

November 2007 -13 years old -sclerotherapy with sodium tetradecyl sulphate and embolization using 4 coils for one vein.

December 2008 - 14 years old – debulking surgery of FAVA malformation in buttock and removal of surface lymphatic malformations (3 small malformations on face, 1 small malformation on neck, and 1 large malformation on buttock)

October 2011 -17 years old - ultrasound-guided intralesional steroid injection with Aristospan (triamcinolone), Sensorcaine and lidocaine

January 2012 - 17 years old –  full resection of gluteus maximus muscle with FAVA malformation and plastic surgery

December 2013 – 19 years old -  debulking residuous FAVA malformation and plastic surgery

Upcoming Procedure:

September 2014 – 20 years old - cryoablation residuous FAVA malformation

(FAVA definition taken from http://www.ncbi.nlm.nih.gov/pubmed/24322574)