There is not a known cure for any combined vascular malformation. Finding a multidisciplinary clinic provides the best outcome for developing a management plan. Conservative treatment of symptoms is recommended. Generally preventative health measures include maintaining a healthy weight, drinking plenty of water, managing any existing lymphedema, practicing good hygiene and proper skin maintenance, and exercise such as swimming.
The Multidisciplinary Clinic
Assessment at a multidisciplinary clinic that includes the specialties necessary to diagnose and treat complex vascular malformations is most helpful for long term management. The Vascular Malformation Clinic at Mayo Clinic in Rochester, MN, the Vascular Anomalies Clinic at Boston Children's Hospital, the Hemangioma and Vascular Malformation Clinic at Cincinnati Children's Hospital, and the Birthmarks and Vascular Anomalies Program at Children's Hospital of Wisconsin are a few of the more well known U.S. vascular malformation clinics that treat both children and adults. Other clinics and physicians are listed in the Resources section.
A clinic for combined malformations like K-T, Parkes Weber or DCMO should ideally include:
- interventional radiology
- diagnostic radiology
- CLT-LANA certified lymphedema therapist
- pain management
- physical/occupational therapist
- nutritional services
- social services
For head/neck involvement add:
- plastic surgery
- oral maxillofacial surgeon
Multidisciplinary clinics provide comprehensive, team-oriented, patient-focused multidisciplinary counseling and consultative service to patients. The clinic design is convenient, easy, and time efficient for patients; essentially, a "one-stop care" concept. Organizationally, the intent is to ensure that the patient and family know that there is a designated "go to" person, and that the clinic is the "go to" place for continuity and cohesiveness in care management. Patients can make appointments without referrals at most vascular malformation clinics. This design best fits vascular anomalies as each patient is different, requiring specialized care and management custom tailored for them. In the initial appointment a general assessment is done, including imaging and any needed lab tests. Choose your multidisciplinary clinic according to your needs. Since there are many types of vascular anomalies, it is necessary to investigate whether the facility can address your level of involvement. Some clinics are equipped to address simple malformations but not experienced in complex syndromes
1. Carry the CARD!
Print this two sided card and carry with you for ER visits, new doctors, and people interested.
2. Keep Medical History Up to Date
Open this Google Document in DocHub to edit, or use it as a template to make your own.
A good program for managing lymphedema is critical to controlling pain, infection, and mobility. The best level of care will be through a physician specializing in lymphedema or through a CLT-LANA therapist (Certified Lymphedema Therapist, Lymphedema Association of North America). LANA has an interactive search function to find a therapist near you using your postal code. Find a CLT-LANA therapist. The program might include many types of treatment, from compression garments or wraps to lymphatic massage.
Page last updated August 17, 2016