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You can always treat these, whether the patient is younger or older. The thing to remember is that if the vascular birthmark specialist advises to remove or treat a hemangioma at a younger time in the patient’s life, you should do that because it’s always easier to treat any vascular birthmark when the patient is younger rather than older. They’re much, much more responsive to treatment at a young age.
Steroid therapy or steroid injections were used classically to help shrink the size of the hemangioma. That does work in many cases, but it’s not very effective. It actually tends to work great in teenagers who have had the hemangioma for quite some time, and it’s now turned into a fibro-fatty remnant of the hemangioma. If you do inject steroids there instead of cutting it out, steroids that have particles in them like Kenalog or Triamcinolone do tend to shrink the steroid. Overall, steroids are not used as a primary modality anymore, especially now that we have lasers and we have propranolol.
One of the main options for a hemangioma which is deforming or in an area where it’s never going to improve even if it shrinks, is excision. For example, you can have a patient who has a large hemangioma on his or her scalp and it can be growing over the first year. That area – even if the hemangioma goes away by itself or shrinks – it’s still going to leave a bald spot with a very big round mark. So instead of waiting, what you do is while the scalp is pliable and the skin really moves around easily, you just cut out the hemangioma. It’s encapsulated – it does not have the risk of bleeding that people think it does and you end up closing that area. Typically, if you do it when they’re young, it’ll heal as though it was never there. If you leave it, the patient has a potential for having cranial defects pushing into the bone, or having a large bald spot which will be much, much more difficult to treat at a later time.
The complications of hemangiomas or other birthmarks strictly depend on where they’re located. If they’re located around the eye, complications could include blindness. If there is a vascular birthmark around the eye, you could have problems with pressure in your brain overall as a part of a syndrome. And again, just like in my situation, if you have it in your airway – if it’s not treated at some point or if it grows large enough, the patient can have significant complications with breathing.
Overall, when treating birthmarks, there is never one correct answer. Sometimes you need multimodality treatments. Various birthmarks we can treat just with a laser. Other ones we actually need to perform laser and then excision, excision and then laser, injection, sclerotherapy. We have a bunch of tools at our disposal and we try to do the best we can with leaving as little damage or risk as we can.
Once hemangiomas involute, shrink, or are excised, they have a very, very, very low chance of coming back ever – if it’s a hemangioma. If it’s a port-wine stain, the situation is different. Capillary malformations tend to re-form over time and they tend to actually grow in size.
Currently we are trying to define what makes a hemangioma different than other types of hemangiomas. The small information that we’ve gotten so far is that they have different types of receptors within them – namely in the infantile hemangiomas, you have GLUT1 receptors, whereas in the other types of hemangiomas, you don’t. We don’t know what the effect of this is yet except for the fact that we’ve seen that propranolol tends to have a stronger effect on infantile hemangiomas. Otherwise, what we are studying is a large variety of syndromes like Klippel Trenaunay Syndrome. We’re trying to figure out what causes the different parts of the mixed venous malformations or the mixed overall vascular malformations.
Vascular birthmarks in general are considered vascular tumors. These are, by definition, tumors. They have to be covered by insurance. Most insurance companies try to fight this, but it’s completely illegal. It has been shown to be illegal and if anybody denies treatment of a vascular tumor, you can actually get a lawyer very easily to send them a letter and the lawyer will quickly come back with an answer that “yes, you can treat this vascular tumor.” This applies to Hemangiomas, this applies to vascular birthmarks like capillary malformations, venous malformations, lymphatic malformations, and arterial venous malformations. Other birthmarks that occur in the skin can turn into cancers. These have to be excised as well. It is illegal for any insurance company not to cover this. The problem that I’ve had more recently was that insurance companies, when we were converting over to Obamacare, the quickest, easiest way I got them to cover it was to tell them “Well, if you don’t cover it, I’m going to go to the news and I’m telling them that you are involved in illegal activity.” Instead of coming back with a doctor to tell me (which is usually what they do as a peer to peer review), they came back with the manager of that particular insurance company who said “we would happy to cover your child wherever you need” and immediately they covered it at the hospital I wanted it to be covered at. It does not matter in general, if you have a child (and this is the situation that we had) – no hospital in the area accepted that insurance. It does not matter because it’s a vascular tumor (a medical necessity) the insurance company does have to pay for the vascular tumor to be treated, especially in the area that the child is in or in a reasonable distance.
A hemangioma falls into the category of vascular birthmarks. This means that it is a type of birthmark that has blood vessels in it. People confuse birthmarks or vascular birthmarks with hemangiomas because they think all birthmarks are hemangiomas, or that hemangiomas kind of cover all types of birthmarks. This isn’t the case. A hemangioma specifically differs dramatically from a capillary malformation (like a port wine stain), a venous malformation, a lymphatic malformation, arteriovenous malformation, or other types of birthmarks and moles which can be red, they can be white, they can be brown, they can be any color. A hemangioma in general is a vascular tumor. It is a benign tumor. It does not mean that it’s a cancer that grows. It’s just simply an overgrowth of endothelial blood vessels. It tends to happen at about 3-4% of the population that we know about. Most likely it happens in more of the population, but it’s not reported. Hemangiomas can be tiny little small things that are on your eyelid as you’re born, or they can be large and deforming. Overall, hemangiomas are present at birth. They could be present before birth. The thing that you need to know about hemangiomas, though, is that they tend to grow. The old teachings that we had in medical school (even when I was in medical school, which wasn’t that long ago) was that hemangiomas don’t need to be treated, that they go away. The reality is that’s completely wrong – in some cases. You have to treat it like a vascular tumor, which is that it’s going to grow over time.
Hemangiomas themselves, when they’re isolated, there’s no need to do genetic testing. However, if you do have multiple different types of birthmarks or you have different types of nevi (meaning the little moles) and then you have birthmarks as well, or you have one leg that’s larger than the other – you do need to see a birthmark specialist. They will send you (typically) for genetic testing as well as imaging to see the extent of the type of a birthmark that you have.
There’s a lot of confusion amongst birthmarks. A lot of people assume everything is a hemangioma or everything is called a vascular birthmark. In general, you’d have to really see a specialist to figure out which is which. Hemangiomas tend to be small raised or rounder structures that are encapsulated tumors. Capillary malformations are similar to what we see on babies (stork bites) and they can actually grow into larger areas and we call them port-wine stains. Not all capillary malformations are port-wine stains. All port-wine stains are capillary malformations. We have venous malformations, which are big macrocystic globules of veins, meaning the veins don’t grow properly and they can grow into bone, into nerves. These become really, really troublesome for patients. Lymphatic malformations, similarly, are very difficult to deal with, but in general are easier than the venous malformations. Then we have the arterial venous malformations, which when they happen can cause a lot of systemic problems. Arteriovenous malformations, meaning you have arteries and veins connecting together and because of that, you end up having issues all around the body – within your liver, within your heart, and overall just blood circulation issues.
Birthmarks vary dramatically. There are vascular birthmarks which are their own field of birthmarks and there are the other larger array of birthmarks which can be caused by skin cells rather than vascular components. Vascular birthmarks fall into their own category. They have their own classifications. These are: hemangiomas (which have their own classifications within themselves), venous malformations, lymphatic malformations, arteriovenous, malformations, and mixed malformations like you would have in klippel trenaunay syndrome. The other types of birthmarks you have (which are more cutaneous-type birthmarks) can be epidermal nevi, they can be melanocytic, they can be mixed, hamartomas – there a ton of different ones that grow up as birthmarks. Anything that you have at birth that’s a mark is considered a birthmark. They all have their own potential of growing into different things. The epidermal or cutaneous types are the ones where you would actually want to monitor over time or cut out because they do have potential of turning into a cancer in the future. The vascular birthmarks don’t, but they have their own series of problems as they grow. For example, you can have a port-wine stain on your face right in this region over here, and without knowing it or without seeing it at birth, the port-wine stain can actually be growing into the brain itself as part of a syndrome. These are things to be aware of. You could have a port-wine stain or a capillary malformation along the lower part of the face. Again, without knowing it, you could have growth in the airway or other areas that were not apparent at birth. The way to know is to see a specialist. Sometimes the specialist can do diagnostics while the baby is in utero. You can see some very large birthmarks. Otherwise, at birth you would take them to see a vascular birthmark specialists, of which there are not that many. Most vascular birthmarks are with you at birth. We try to define them differently when we’re taking our board examinations as doctors, as to if they are there before birth, at birth, or they’re seen after birth. In general, it’s a birthmark, they’re there at birth to different extents and the different types of birthmarks grow at different extents. They each have their own characteristics, they each have their own growth potential and they each are treated completely, completely differently.
We don’t know the causes of hemangiomas themselves. We are doing studies to look at genetic links between other syndromes like Klippel Trenaunay Syndrome and other syndromes involved in birthmarks. However, at this current time we do not know what really predisposes patients that having those. You do have a larger number or percentage of patients with parents who had fetal alcohol syndrome or premature birth. Otherwise, we don’t have any other predisposing factors that we definitively know cause hemangiomas.
Hemangiomas (from our understanding from the largest publications) occur in about 3-4% of the population. There is a huge difference in prognosis and need for treatment and response to treatment from where it occurs. We don’t know who it happens in or why it happens. In general, there are a couple of syndromes that are more likely to have hemangiomas. There are many that are more likely to have port-wine stains such as Sturge-Weber. In general, we don’t know what causes hemangiomas themselves or which mutation would cause them.
These vascular birthmarks can occur anywhere on the body. When they occur on specific parts of the body (like in a nerve segment on the face) there are other places that we have to go look for it, just because we know that when port-wine stain happens over here, we’ve got to look inside. If a hemangioma happens all around the area, we’ve got to look inside. If a birthmark happens over here around the eye, again, we have to look inside. Specifically what we’re looking for is spread to either the eye, the optic nerve, or to the brain itself.
In general, I think when looking at hemangiomas and vascular birthmarks, the classic teachings that we have from medical school (and again this is not that long ago) is not completely incorrect, but is not completely accurate. If you want the best for your child and you are concerned at all about their outcome for whatever reason – it could be appearance, it could be the way they interact with other kids, it could be their breathing. For any of these reasons, you need to go seek a vascular birthmark specialist. If you can’t find one in your area, you can always search on Google. You look specifically for vascular birthmark specialists and you can send photos and ask questions to those people. There are a lot of patients who come in from out of the country in the same exact way. They can’t find a birthmark specialist around them, so they send a message to one of us and if I can’t take care of it, I sent it to my friend who’s closer to them. If they can’t take care of it, they send it to the Vascular Birthmark Institute over in New York and there’s also the Vascular Birthmark Foundation.
In general, most hemangiomas will involute or shrink by themselves. This doesn’t mean that they’re not going to be a problem. It just means that over time they tend to grow and then they shrink back down. Depending on the type of hemangioma, whether it’s an infantile hemangioma, a NICH, or a RICH (these are the different types that we have), they can grow and shrink at different rates. Most hemangiomas in general are small. They do not need to be treated. They go away on their own and you’ll never notice that they were there. Larger hemangiomas – even if they go away, they leave behind in their tracks an area of fibro-fatty tissue, meaning the blood vessel part of it comes out, but you’re still stuck with a lump of mushy tissue in an area. If this happens on the scalp, it’s a bald area on the scalp that looks round and raised, so it should be treated. If this happens on the face and it doesn’t go away, again – it should be treated. You can assume that if your kid has a small hemangioma, it’s going to go away by itself. If it’s in an area that might cause them a cosmetic problem in the future – this is very important – you should go see a specialist because they could get something as simple as an eye gel called Timolol to put it on there to help it shrink away or a quick laser to help it go away. There is nothing wrong with seeking advice. A lot of parents are scared to do that because they think that in the future of their kids will look back at them thinking, “Oh my G-d, my parents thought there was something wrong with me.” The reality of it is that most kids would appreciate it because when kids grow up with marks on their faces, they do have difficulty interacting with other children. It is, again, up to the parents what to do. However, there’s never any harm in seeking advice about birthmarks, especially when they occur on the face. When they occur in the airway, you have no choice. You will go seek a specialist and the proper diagnostics do need to be performed.
Hemangiomas themselves are defined as benign vascular tumors, so by definition they themselves are not cancerous. However, other vascular malformations can grow and they can grow to be very, very harmful. Most of them would remain in the realm of what we call benign, meaning they stay within their capsule or in their area. However, they can be destructive and benign, meaning that even though they’re not true cancers, as a malignant cancer, they can actually grow into other areas and disrupt either the bony architecture (the muscular architecture), breathing, or even the overall blood flow in your body.
Most vascular birthmarks are diagnosed visually, meaning you go in and see the doctor, they take a look, and if they are vascular birthmark specialists, they know what it is. They can tell you exactly what it is. At that point, they can determine treatment. Most of these are going to be just looking at numbers. A hemangioma: if it’s a small one, it doesn’t need to be treated. If it’s slightly larger, it can be treated with propranolol, which is an oral blood pressure medication. If they’re smaller and flatter, you can treat them with Timolol, which is a topical blood pressure medication for the eye. Otherwise, they can be treated with a laser so they can shrink down. Classically, they were treated with steroids (which is an injection) and the larger ones are treated by excision and closure, meaning we cut them out and we close the area like they were never there. Other types of diagnosis needed: again, if you see a vascular birthmark specialist (or an ear, nose and throat specialist) and they do see that there’s a pattern of the vascular birthmark on the face that they were worried about, they will perform either imaging or endoscopy. They do that to make sure that there’s no growth down into the airway. The imaging they can do can look at the airway and it can look at the areas around the brain to make sure that the patient or the baby will not develop future problems with the fluid pressure around the brain. If it’s somebody who has arterial venous malformations, they would do the same kind of scanning around the body to make sure that there are no more or no further malformations in the liver or in other vital organs.
If there is any cause for concern about the birthmark and the pediatrician is not 100% certain that the birthmark will go away, it’s a good idea to go see a specialist at that point.
Most parents who see a hemangioma or a birthmark on their children would first seek the advice of a pediatrician. Most pediatricians are trained classically, meaning they are trained not to treat hemangiomas because they assume they will go away. This, however, is not correct in all instances. So if you are concerned about the birthmark causing any facial deformity, any breathing issues, or any other issue, there’s no harm in seeking a second opinion with a vascular birthmark specialist. There are several around the country. They are unfortunately uncommon, but they are around.
In most cases, hemangiomas do not need to be treated if they’re small or in areas that would not affect the patient’s appearance or function. If the hemangioma is in an area that would affect either their appearance or their function, you should treat it. The treatment can be as simple as using a topical gel called Timolol. For flatter appearing ones, using an oral medication called propranolol, which is currently the most effective for shrinking hemangiomas around the body in general. Or you can use a Pulsed Dye Laser or other types of lasers that hit red – Pulsed Dye being the gold standard to help shrink the hemangioma or birth mark. If the hemangioma is larger or obstructive, surgery is often needed. The surgery, again, can be performed with laser or it can be performed with direct excision since these are all encapsulated tumors. Beyond that, some people have tried Sclera Therapy – usually not for hemangiomas but for other birthmarks. Those combination of things usually take care of hemangiomas. When you get to venous malformations and lymphatic, they become a little more complicated. But most of what our patients would see in the population is just a straightforward infantile hemangioma.
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