Deciding on treatments



VA_blue_CVM There are good things about it and bad things about it
Sometimes I didn’t want to do surgery but then sometimes I think, “Oh, this could help me,” or, “hey, this could make me have less surgeries.” So really it’s yes or no because there are good things about it and bad things about it.

Riley, child, CLOVES syndrome


VA_blue_CVM I don’t regret doing any of them
I don’t regret doing any of the procedures I’ve had, because if they didn’t benefit me at least they didn’t harm me. Most of them have benefited me a lot, and were able to get me to where I am today and definitely improved my quality of life. Debulking is something I’m asked about a lot, from other patients and other family members of patients. That one’s a little bit tricky because in my case, it definitely improved my quality of life. I had two of them and it definitely helped remove all of that excess You always have to consider the benefits and risks.

Erica, young adult, Klippel-Trenaunay syndrome


VA_blue_CVM Why do you want the intervention in the first place
I got offered two different interventions. Interventional Radiology can go in under the skin and collapse tiny lymph pockets, which is a minor surgery. It doesn’t have much major recovery; it would probably be a day surgery to treat the swelling I have. Or, in a years’ time a surgeon can go in and de-bulk that area, which will get much more drastic results and a better contour, but again I’ll have to deal with the drain and that sort of stuff.

You end up having to get very good about what exactly do you want out of the procedure, why do you want the intervention in the first place, and that’s something I’m still sorting out. I don’t know if I want the intervention because of the pain or because of the way it looks, and until I figure out what exactly I want out of it, I’m going to do neither. If it’s an aesthetic thing, I don’t necessarily want to commit to that huge surgery, but if it’s because of the aesthetics, the interventional radiology intervention won’t do all that much. So you have to mull these things over for a while.

Sarah, young adult, Klippel-Trenaunay syndrome


VA_blue_CVM Deciding when and which procedures
I think deciding when and which procedures becomes very situation specific. Certainly in the past, it’s been dependent just on where I am in my life. I couldn’t do this debulking procedure until this summer just because of where I was with school and my health really wasn’t stable enough to go in and do something like that. So there are health considerations, time considerations, and that’s very specific to the individual. Somebody else might have been totally fine with taking a semester off of school; I’m not one of those people so I have to schedule it in the summers, so there’s always a scheduling aspect. And then you have to assess your own motivations. You have to sort out what it is that’s bothering you and what the different treatments can possibly offer.

So the interventional radiology procedure can help deal with the pain and swelling, but the debulking will improve the contour [of the leg]. I decided on the debulking because currently I mostly wear pants or dresses. That’s partly because of preference, but it’s also because I can’t wear fitted pants or jeans. Khakis, dress pants, they’re all out of the question because of the way that my right leg is shaped. So that’s kind of what ended up being the deciding factor there, and again there was a time component. I would like to go to graduate school and become a professional, and you can’t be in sweatpants forever, so that was kind of what went in to that.

Sarah, young adult, Klippel-Trenaunay syndrome