Caitlin: The first time they did the laser, it made a huge difference because I had all these little blebs all over my legs, on my knees and toes and stuff, and they used to hurt when you would even touch them, and once they did the laser, they were gone. Before they did the laser, like when I put on the compression stockings, it used to hurt because you touch them and it hurts. When they did it, it didn’t hurt anymore because there was nothing there.
Mom: [recovery] takes about a couple of days… well, it takes about 3 weeks, really, but it’s painful what, the first 2 or 3 days?
Caitlin: Yeah, and then it gets better. Then there’s like, nothing there, it doesn’t hurt at all.
Mom: The laser is recent. They just started doing the laser 2 years ago and that’s so much better than just doing the sclerotherapy. It’s just easier for them to do that, and it seems like it’s faster recovery too. The lasers made more of a difference than the sclerotherapy that she’s had done, because she has all these little places that rub against her skin or her pants, and they just hurt, they’re just irritating, or her toes. It’s just a better treatment, I’m glad that they have that here.
Caitlin, pre-teen, and mother, Klippel-Trenaunay syndrome
Most recently I’ve done the CO2 laser ablation that they do for the superficial things, which I have to say gives really good results, but depending on how large an area they do you have to plan for at least several weeks of an oozing, weeping, sticky wound. When it heals, it’s like all those areas that used to be these venous blebs that could bleed are now just a clean scar, so I have to say I’ve also been very pleased with that.
[Later] From my experience, the laser is a fairly quick procedure relative to other things. Usually you get admitted through interventional radiology, you have the pre-surgical appointment with the interventional radiologist where you kind of map out which areas you want to have treated. You then have general anesthesia, so they put you to sleep, and then depending on how large an area they’re treating it can take an hour or two. I’ve never actually seen what they do since I’m asleep, but they use a laser to treat these areas and then you wake up in post-op and usually it’s a pretty quick discharge process. You’re there until you can keep some fluids down, and I’ve never had to stay overnight for the CO2 laser, so it’s usually just a day surgery thing and again that day itself is pretty minor. I’d say the recovery afterwards is more of an issue, just because you then have those wounds for a while, and because you were treating abnormal skin to begin with, it doesn’t heal as quickly as you’d like it to, I suppose.
Sarah, young adult, Klippel-Trenaunay syndrome
I go and get the blebs removed
Even now I see a plastic surgeon on a yearly basis. I go and get the blebs removed because I bump them or they rub and they bleed and they’re sore and I have pain. So I just elect to make an appointment if it’s been bleeding for 2 weeks. When they can squeeze me in I go and get it lasered or cut out, in the office. They don’t put me under, they just numb the area and do it right then. From then till now, that’s what I’ve been doing every year or two years I go and get a couple of them done because they are problematic.
Lucy, adult, Blue rubber bleb nevus syndrome
Getting hit with an icicle
I would say around the early 90s I started to have the carbon dioxide laser treatment on the blebs. Since then I’ve had a couple of those kinds of treatments and now they blast over 30 of them that were problematic… It feels like you’re getting hit with an icicle, it stings for about 10 seconds after they hit them. I usually lay down on the table and they make you wear these special goggles because of the laser. They usually feel near where they’re going to shoot just so you can brace yourself, because it feels like a gigantic bee sting and then it just feels ice cold, like somebody put ice on it and you feel a burning for a few seconds. They usually say, “Ok, we’re going to do this one,” and they tap your skin near there and they do it. And usually you feel sore, like the ones on the back of my legs that they did last time, because the skin is so burnt in that area that it just feels like a really bad blister. Then after about 2 months I saw that the blebs either went away completely or I have a little red burnt mark, depending on how deep they are because the laser* only goes 3 millimeters, it can leave a little red mark. But I would rather have a little red dot than this big bleb that keeps bleeding or whatever all the time.
Lucy, adult, Blue rubber bleb nevus syndrome