Thank you for visiting the Vascular Birthmark Institute website. This area of the site is a way to help you find out information about frequently asked questions, parent support, our staff, insurance issues, patient testimonials and your medical privacy rights with our practice. We have a very friendly and family type of practice where all of our staff work very closely together.
Our goal is to make sure that you or your family member has the best experience while visiting our office. We strive to give you enough information to make an informed decision on you or your loved one’s care.
This is the most fundamental question. We believe that all hemangiomas should be seen by a specialist in this field. Most cities will have a Vascular Anomalies team of physicians. We strongly urge that the child be seen at one of these centers. In many instances, early laser treatment or topical timolol can prevent a small hemangioma from enlarging. All too often, the child is seen too late for this and then requires more invasive treatment. It is therefore important that the child be seen early. In all but small hemangiomas, some form of treatment will help.
Yes, there are 3 different types of vascular birthmarks:
- VASCULAR TUMORS: The most common type we call HEMANGIOMAS (infantile). Hemangiomas are an example of a vascular tumor. The distinguishing feature of these types of birthmark is that they always proliferate (grow rapidly) during the first few months of life. This is especially so during the first, second, and third months of life. By about the sixth month, their growth rate slows down and they usually stop growing by the ninth month. From then on, the hemangioma will involute (shrink). This growth cycle is common to almost all hemangiomas.
- VASCULAR MALFORMATIONS are different from hemangiomas. They will increase in size throughout the life of the patient and will never shrink (with the exception of Lymphatic Malformations which may fluctuate in size).
- VASCULAR TUMORS OTHER THAN HEMANGIOMAS, are by far the most uncommon. This group have a variable behavior and are usually diagnosed by exclusion. They also keep growing throughout the patient’s life. The most common of these is called Kaposiform Hemangioendothelioma which causes bruising of the overlying skin and may eventually cause generalized bleeding.
From about the age of nine months, most hemangiomas will begin the process called “involution”. This means that they will shrink and blood vessels will be replaced with fibrous-fatty tissue. The rapidity with which they shrink will determine the end result. One can usually tell by age 2 1/2 -3 the trajectory this will take. Generally speaking, the faster the process of involution, the better the result. The cutoff age is about 6. Those hemangiomas that complete the involution phase before the age of 6, will leave very little residuum. On the other hand, those that involute later than 6 years of age, will leave a considerable residuum and whitish skin, and will very likely need corrective surgery. About half of all hemangiomas will leave some sort of fatty mass that is likely need corrective surgery. Click here to see an involuted hemangioma.
We believe that all hemangiomas of the face or neck should be seen by a specialty vascular anomalies team. Visible facial hemangiomas should be carefully followed and in many cases treated. Early aggressive treatment of segmental hemangiomas can prevent complications and avert years of reconstructive surgery.
Although there are differing opinions, there are many reasons to intervene early. Firstly, a child develops an image of him/herself by about 2 to 2 1/2 years of age. A child with a facial difference will become aware of his/her disfigurement by this age. In some children, this happens sooner. Early intervention will prevent or minimize this. Secondly, the younger the child, the better they heal. A surgical wound on a 1 to 2 year old will leave less scar tissue than a surgical wound on a younger child. Thirdly, blood loss can be avoided with meticulous surgical technique. Obviously, the more experienced the surgeon, the less likely this is to be a factor. All of these factors mitigate for early rather than late intervention. There is nothing to be gained by waiting and a lot to be lost.
If the AVM is well localized, it can be ‘cured’. In more diffuse lesions, we can debulk the AVM and significantly improve the quality of life of our patient. Using a combination of embolization and surgery, we are able to minimize blood loss and remove enough of the AVM to relieve the symptoms and very often, the patient’s appearance will be greatly improved. In some instances, we have been able to remove the entire lesion and have seen no recurrence for many years. We use facial plastics techniques to improve a patient’s appearance and symmetry.
The growth period of a hemangioma will vary depending on the type of lesion. Focal hemangiomas grow for between 6 and 9 months. Growth beyond this time is rare. Rebound growth of focal hemangiomas has been seen after stopping propranolol or steroids before the end of the growth period. Rebound growth after surgical resection is extremely unlikely by the right surgeon. If surgery is done after 9 months, rebound is virtually impossible. Segmental hemangiomas can grow for up to 2 years. Any treatment, whether it be steroids, propranolol or surgery, done before the end of this period can result in regrowth but is least likely with surgery.
This is an important question that can confuse many parents. This decision is best made by the physician treating your child but as a parent, it is however, your prerogative to be informed.
During their growth period, segmental hemangioma are best treated with propranolol. If there is a skin component (red skin overlying the hemangioma), this should be treated with laser. Early aggressive management can, in many cases, return the skin color and contour to normal by the time the child is one year of age.
Regarding focal hemangiomas, a disfiguring facial hemangioma should be treated. If it is superficial, topical timolol or laser treatment is best. If there is a deeper component, laser treatment together with propranolol treatment is best. Early surgery should be contemplated if there is involvement of the eyelid, airway or there is ulceration. If it seems likely that surgery will ultimately be necessary then on occasion, this may be contemplated.
Many babies are born with birthmarks, which are also called vascular anomalies. In 90% of these cases marks disappear by age one, about 10% of children have a significant vascular birthmark that requires the opinion of a specialist. Vascular birthmarks are made up of clustered blood vessels and can be raised or flat, pink, red, or bluish in appearance.
Vascular birthmarks generally fall into two categories:
- Hemangiomas- a benign, blood-filled tumor or mass
- Vascular Malformations- an abnormality of the larger deep veins and arteries.
Typically, hemangiomas are not present at birth. They usually become noticeable between one and four weeks of age and may continue to grow for another 9 to 12 months. Hemangiomas, which are made up of capillaries, then begin a slow shrinking process called involution. In most cases, this natural process of shrinking is insufficient and some intervention will be necessary to restore the patient’s appearance. Vascular malformations, on the other hand, are always present at birth, although they may not become apparent immediately. They consist of arteries, veins, or lymphatic channels, depending on the type of malformation. Unlike hemangiomas, vascular malformations do not shrink over time; they tend to grow and expand slowly. Males and females are affected equally by vascular malformations. There are five major types: midline venular malformations (“stork bites or angel’s kiss”), venular malformations (port wine stains), venous, arteriovenous, and lymphatic.
In some severe cases, hemangiomas interfere with eating, breathing, seeing and hearing and require aggressive treatment. Internal hemangiomas, referred to as visceral, occur in the liver, intestines, airway, and brain. These are difficult to detect and generally require immediate intervention. A large hemangioma can increase the work of the heart and cause congestive cardiac failure.
Among the possible treatment options are laser treatment, surgical removal, propranolol (first line for medical), steroid therapy (oral, topical, or injection into the birthmark itself), and the tumor shrinking drug Vincristine. Treatment should be planned according to the stage of the hemangioma’s development, as well as its location and size. A laser uses intense and powerful light waves to treat the hemangioma. Different types of lasers are used to treat different types and stages of hemangiomas. In general, several laser treatments, generally done under anesthesia, will be necessary. The goal of this treatment is to restore the normal color and texture of the skin by destroying the dilated blood vessels. Laser can be used on ulcerated hemangiomas. Surgical excision is often recommended for deep hemangiomas that have ulcerated, stopped growing or that are growing and causing problems to a body organ; such as an eye or nose.
Propranolol is the first line medication for proliferating, large, or deep hemangiomas. Steroids have also been used in the past and are effective. However, there is a significant side effect profile which now relegates it to be a secondary drug. To prevent the stomach irritation and acid reflux that is common with steroid therapy, an antacid is also given. Steroid injections directly into the hemangioma are an option, particularly if the hemangioma is large or deep. The hemangioma’s location often determines if the type of treatment is possible.
Vincristine is a tumor shrinking drug often used in chemotherapy that has been found effective in the treatment of large, rapidly growing hemangiomas that are not responsive to propranolol or interfere with body function or in the case of multiple or large internal hemangiomas. Vincristine is administered intravenously in the hospital. Common side effects include nausea, vomiting and hair loss. Our office would refer the patient to a pediatric hematology/oncology physician to monitor the therapy.
There are several types of vascular malformations. Midline venular malformations are common. You may know them as “Stork Bites” or “Angel Kisses”. In general, we believe that they fade within a few years. If they do not, laser treatment can be done in later childhood. The appearance of venular malformations, commonly known as Port wine stains, can be much improved through laser treatment. Such treatments may need to be administered intermittently until the child is an adult.
If the patient is an adult we can also do laser therapy to lighten the malformation. Some adult patients with port wine stains may have thick, hypertrophic tissue over their birthmark. This can be treated with surgical excision to debulk or thin the tissue to have a more normal contour of the affected area.
Lymphatic Malformations, frequently located in the head and neck area, consist of abnormal dilated lymph channels. When something disturbs this system, which collects and transfers tissue liquids, the lymphatic malformation is created. Excess fluid accumulates and the lymphatic vessels enlarge, creating a mass. Treatments vary and generally focuses on helping the patient maintain normal appearance* and functioning, such as speaking and swallowing. Steroids, lasers, sclerotherapy or surgery may be recommended. An ultrasound or MRI (magnetic resonance imaging) is usually obtained, depending on the location, for proper diagnosis and a treatment plan such as eating or speaking.
Arteriovenous Malformations are associated with defective blood flow, and while present at birth, are not generally noticed until later. They are most often found on the head and neck and have varying growth patterns. Depending on the size, embolization and surgical removal is generally necessary. Laser treatment can be used after surgery to treat the skin portion.
Navigating through the diagnoses and treatment options relating to a vascular anomaly can be overwhelming. As a parent and/or patient, it can seem impossible to put the pieces together. We are here to help.
The Vascular Birthmark Institute of New York is uniquely designed to assist in any way that will help the patient and the patient’s family with this difficult process. We provide patient advocacy services.
Emotional Support – Sometimes there is just nothing like speaking to someone who has been where you are, someone who has had a child go through the same treatment and sharing stories, frustrations and concerns.
What to Expect – Where do we stay? Do cabs in New York require car seats? How do we use the subway? Which airport is best? Where do we fill prescriptions? What is the waiting room like at the hospital? These are all questions that are frequently asked – but sometimes we have others – and when answered can relieve a great deal of stress and anxiety. We are here to answer those questions and offer a bit of reassurance. If we do not have the answers, we can find someone who does.
Insurance – There are a thousand questions about insurance. If you reach a place where you feel lost with your insurance – we are here to help support you in your efforts.
Is there another patient just like my child – often it is so reassuring to speak to another patient or parent who has been through nearly the exact process that you are facing. We network as much as possible to connect parents with other parents of children who have a similar condition.
The Parent Support division of the Vascular Birthmark Institute is ever changing and growing to meet the needs of the patients. The specific descriptions listed above are just the beginning.
Your participation can continue to further our efforts. If you would like to be included in a network of parents for patient support, please feel free to Contact Us. Together we can continue to support each other.
Our physicians work with all insurance companies.
Sadly, many insurance carriers consider this to be cosmetic surgery. However, we have successfully convinced insurers that this is not the case. Vascular Birthmark Institute administrative staff can advise you, but there are numerous steps that you may need to take to help establish your case. We work with all insurance companies.
Keep a diary of your child’s condition- document when you first noticed the lesion, any changes you detect, incidence of bleeding, whether it interferes with the child’s eating, speaking or other activities, physician visits, etc. Include dates and descriptions. Maintain a photographic record as well.
Consult with your employer’s benefits coordinator- This person is knowledgeable about your employer’s policy and can double-check that the insurance company is meeting all the requirements. Bring your diary and photos of the lesion with you to help demonstrate your case.
Try to contact your insurance company claims adjuster. Send this person photos and articles about your child’s condition.
If your appeals fail, petition your State Commissioner of Insurance- In your letter to the Commissioner, use key phrases like “quality of life,” describe bleeding incidents or the potential for interference with your child’s normal activities, such as eating or speaking. Remind the Commissioner that treatment by a specialist will ultimately result in fewer doctor visits and costly complications, ultimately saving money. Some parents have been successful in overturning their insurance carrier’s denial this way. If you have any questions, we can assist you in this process.
The National Lymphatic Disease & Lymphedema Registry
Attention patients with Lymphedema, Lymphatic Malformations, and other Lymphatic Disorders:
The National Lymphatic Disease and Lymphedema Registry, initiated by The Lymphatic Research Foundation, is a confidential database for individuals with lymphatic disorders. Participation in this Registry is voluntary and will contribute to research in the classification, treatment and prevention of these disorders.
Click on this link to the Registry Site http://registry.lymphaticresearch.org/
Facial Infiltrating Lipomatosis (FIL)
WonderFIL Smiles is a non-profit, global community established with the goal to support, connect and empower those affected by FIL. To learn more visit http://www.wonderfilsmiles.com
HEALTH INFORMATION PRIVACY
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It gives patients more control over their health information. It sets boundaries on the use and release of health records.
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It holds violators accountable, with civil and criminal penalties that can be imposed if they violate patients’ privacy rights.
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For patients – it means being able to make informed choices when seeking care and reimbursement for care based on how personal health information may be used.
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It generally limits release of information to the minimum reasonably needed for the purpose of the disclosure.
It generally gives patients the right to examine and obtain a copy of their own health records and request corrections.
It empowers individuals to control certain uses and disclosures of their health information.