What are different surgical treatments you’d recommend?
I’ll often do what loosely might be called a debulking operation to remove overgrown tissue from almost any external body area for the purpose of controlling pain; controlling infection—because some of this abnormal tissue, the more there is the more likely there’s been infection, especially if it’s got open surfaces that weep; for improving function. If somebody has an extra 10 or 15 pounds of tissue wrapped around their leg, it’s difficult for them to walk or run or do all the normal things they would do with their leg; and some significant component of it is psychosocial in that people don’t like to be disfigured. They have a much better body image and function better in life when they look as much like other people as they can. So I do quite a lot of what some might say is very aggressive operative intervention – repetitive, multiple operations to get a child or sometimes an adult to appear as “normal,” whatever that is, as can be. That leaves lots of scars but most people would rather have surgical scars and a contour that fits in normal clothing or normal shoes than have no scars and have enormous deforming bulk. So, that’s one thing that I do a lot. I also commonly operate on the internal organs that can’t be seen in the chest and abdomen. Many patients with vascular anomalies of the genitalia can be dramatically helped with surgical procedures.
Steven Fishman, MD
When would surgery be an option?
Some lesions are resectable due to their location, their size, relatively low risk for resection by an experienced surgeon and the lack of other treatment options. For lesions that are going to improve on their own, we would rarely recommend surgery. For lesions that infiltrate and it’s hard for anyone to define where the edge is, we would also rarely recommend surgery. Sometimes the goal of surgery is not to remove all of a lesion, but to “debulk” it, removing symptomatic portions or restoring some symmetry. We’re blessed to have a really experienced and thoughtful surgical group here who may be more likely to say “no” than to go to the operating room, unless they believe they can help.
Cameron Trenor, MD
What are the advantages and disadvantages of surgery?
The advantage of surgery is that it is the only form of treatment that can remove the lesion. The disadvantage is that it is the most invasive form of management and is associated with the most risks.
Arin Greene, MD, MMSc
When might you recommend surgery?
It would really depend upon which particular anomaly somebody had. In general, based on if a patient has a problem that we’ve seen before and we’ve dealt with before and we’ve seen good outcomes or a range of outcomes, we can say, “You can stay like you are or you can try surgery and here’s some pictures of our patients, here’s before, here’s after.” I do a lot of before and after photography and show patients what the potential outcomes are and advise them about what I think the risks are of significant bleeding, infections, wounds falling apart, length out of school, out of work, pain, etc…The more experience that we have the easier it becomes for us to give confident advice. The times when it’s difficult are when a patient has a problem that we haven’t treated before but we think we have a surgical option. At that point, we really have to be very, very honest about our uncertainty. We can base our judgment on related similar problems, but if it’s really something we haven’t done before, which is not that rare, then we have to come clean and tell them, “I think I can do this but there’s a reasonable chance of this a, b, or c complication and a, b, or c outcome, and the option is that or staying the way you are.”
Steven Fishman, MD
When might you hesitate to recommend surgery?
We’re occasionally in a situation where a surgical option is available but of such high risk that we don’t consider the operation until the family or the patient forces us. …It’s really important that the family understands. I’ll tell them, “I am a surgeon. I hardly ever get frightened before an operation but a few times a year I do and you have to know that I’m really scared to operate on you or your kid,” and that gives them perspective. It scares them, but it’s real, and they need to understand it. I absolutely have done operations where families expected a realistic possibility of the child bleeding to death on the operating table, but when they’ve been bleeding to death at home repetitively… they will reach a point sometimes where they say, “Okay, do it.” Fortunately, that’s a very, very small minority of what we do… and I’ve never actually had a patient bleed to death during an operation. Most of the time it’s a much happier situation where patients come to us having never been offered a surgical option where it’s actually quite a routine procedure for us to do.
Steven Fishman, MD
What are common questions around surgery?
1) “If you operate on my child, what are the scars going to look like?” I tell patients that anytime a lesion is removed a scar results, but that I would not agree to excise a vascular anomaly unless I thought the scar would be less noticeable than the lesion.
2) “Will this come back after it’s removed?” Many vascular anomalies are not curable by resection and they can recur. Patients may require additional operations in the future.
3) “When is the best time to remove the lesion?” In general, memory and self-esteem begin to form around 4 years of age, so a common time to correct a deformity caused by a vascular anomaly is between 3 and 4 years of age.
Arin Greene, MD, MMSc
If we’re going to be operating, they want to know (like anybody else would) the nature of the procedure. How long it’s going to take, what things are going to look like afterwards, whether symptoms are going to go away, whether the bleeding is going to stop, whether the pain is going to go away, when they’ll be able to walk, and interestingly, I often have to answer the question with, “I don’t know,” because I have a choice; I can either lie or I can say, “I don’t know,” because a lot of the operations I do are custom operations. No two patients are alike with these malformations; there are patterns and depending on the body part and the type of lesion, I know from my experience I’m going to approach it a particular way, but I have to customize it and tailor everything to the patient’s specific anatomy. I very commonly tell families “I don’t know and I make it up as I go along” which sounds like something that you wouldn’t want your doctor saying to you, but in my experience it’s actually been quite reassuring to families because it’s honest. If you say “I don’t know,” when doctors aren’t supposed to say “I don’t know”, then you must be being honest, and I have found ways of expressing this in ways that actually exude confidence. It’s, “I don’t know or I’ll make it up but based on our large experience, I think this and this and this, and the only promise I make is that we’ll do our best and I’ll treat your child as if it was my child,” which I find reassures families.
Steven Fishman, MD
What is the follow-up process for a patient after having surgery?
Patients usually follow-up 2-3 weeks following the procedure, often to remove sutures and discuss scar management.
Arin Greene, MD, MMSc
Are patients ever resistant to surgery?
I almost never talk a patient into an operation. Sometimes they’ve talked me into an operation because I’m uncertain that there’ll be enough benefit that they’re going to be happy. I sometimes think that patients feel if they have an operation, it’ll make everything perfect. I worry that they have unrealistic expectations, so my job is sometimes to control their expectations and then see if they still want the operation. Very rarely would I sort of push somebody into an operation; these are not cancers. One of the most effective ways for patients to decide is to have them meet other patients who have been through similar situations, and the patients will convince each other.
Steven Fishman, MD
How do families generally respond when you present surgery as the next treatment option?
Families are always concerned about potential complications when it comes to surgery. However, in general, families are very receptive. You can tell whether families are amenable to surgery just by talking to them; some parents are automatically against it and do not want to put their child through it. As the surgeon, you are not going to push them unless it is going to make a huge difference. Many of the operations I do are quality of life operations since there are not many life-endangering problems in the extremities. This is not the case for anomalies in the head, neck, and the heart, lung, and abdominal viscera.
Joseph Upton, MD