There’s no cure for CLOVES
Riley: I’ve probably had like, 14 to 16 surgeries, I think.
Mom: Is there a cure for CLOVES?
Riley: There’s no cure for CLOVES or not that they’ve really figured out.
Mom: So the only treatments right now are…
Riley: Surgeries and possibly a medicine called sirolimus.
Mom: Yup. And embolizations that we kind of count as a surgery because you were under general anesthesia. So a lot of surgeries. Are there any in particular that you can talk about?
Riley: In 2008, I was in the hospital for, like, a month?
Mom: More than a month in the ICU.
Riley: For more than a month and during that time I was in the hospital and rehab. I also remember, recently, I had a pretty big surgery and I was in and out in three days.
Riley, child, and mother, CLOVES syndrome
I’ve had an array of treatments
I’ve had an array of treatments. I’ve had sclerotherapy, which has worked before for pain relief but it’s not working so much in recent times. I’ve also had sclerotherapy to treat areas of the malformation that tend to bleed. I’ve had debulking done, and I’ve also had an epiphysiodesis.
Erica, young adult, Klippel-Trenaunay syndrome
Pneumatic compression device
I also have this pneumatic compression device. It wraps around the impacted leg, and massages the fluid out of your leg. That’s something else that really helps with pain a lot. And again, someone’s doctor will say this may or may not help in your case. In my case, they thought it would be very beneficial to me because, when the circulation is flowing more properly, you have less of a chance for infection. The water and other fluids aren’t just pooled in one area; they’re moving throughout your body, they’re circulating. It can help reduce infection, pain, swelling, all that stuff, so it’s definitely been something that’s been helpful for me.
Erica, young adult, Klippel-Trenaunay syndrome
MANY surgeries and procedures
I have had MANY surgeries and procedures since I was born. Most of my surgeries have been to debulk the LM tissue and to reconstruct surrounding areas where the LM had infiltrated. When I was 3 days old I had my first surgery to remove the large lymphatic cyst that went from my left cheek all the way down to my breast line. At that time they placed a tracheostomy which I’ve had ever since. Before I turned a year old I had several more surgeries, two of which led to major complications and setbacks. This led to me requiring a gastrostomy tube. I have also tried sclerotherapy three separate times. They didn’t really start using sclerotherapy to treat LM until I was a teenager. The first time they did it, it was extremely painful when I woke up. That was over ten years ago, and over the years they have learned a lot about how to treat pain before you even wake up. Recently, I have had bleomycin/tetracycline sclerotherapy. The bleomycin is used in LM to help treat the small LM cysts.
Emily, adult, Lymphatic malformation
Tiny blue dots in my GI tract
I had these tiny blue dots in my GI tract, and between the age of 5 and 7 I started to have multiple blood transfusions because I was just bleeding constantly from my GI tract. They put me on iron and a steroid treatment. The blebs on my skin were getting bigger, the mass on my neck was still growing and when I took the steroids, everything seemed to shrink. It didn’t go away, but everything was smaller. I guess I was on the steroids for about 6 months, and as I tapered off they noticed that everything got even larger than it was prior to starting steroids. Overall I was in and out of the hospital getting blood transfusions and having surgery to remove the blebs.
Lucy, adult, Blue rubber bleb nevus syndrome