Lymphatic Malformation Surgery Chronicles - My First Year of Life!

When I was 16 days old, I had my first surgery. My parents tell me that I was at my 2-week check up with my pediatrician and she told us we had to down to Texas Children's Hospital in the Medical Center immediately and that she would be scheduling a surgery with a pediatric surgeon THAT day. What had happened was that one of the cysts in my neck had bled into itself. I guess that's bad. It sounds bad. It needed to be drained. They tell me it was a very long day of waiting - and they make sure to tell me that I couldn't have any milk or anything since I was going in for surgery. I finally had the surgery at like 9pm, after waiting all day. They told me it was like a 10 minute procedure, where they made an incision and drained the blood from the cyst. They packed it and didn't even stitch is up because it was so small. However, it's like the one scar you can still see on me today (without looking inside my mouth that is).

My next four surgeries were when I was between the ages of 6 months and 12 months old. They were sclerotherapy sessions and from the stories they tell me, these had a huge impact on my life.

For those that don't know, sclerotherapy is a procedure used to treat blood vessels or blood vessel malformations and also those of the lymphatic system. A medicine is injected into the vessels, which makes them shrink. It is used for children and young adults with vascular or lymphatic malformations.

We had to apply to be part of a research study to use a medicine that was not (and still IS NOT) approved by the FDA. It is called "OK-432" or Picibanil and it is meant for treatment of Lymphatic Malformation macro-cystic cysts. We were VERY fortunate to be accepted into that study!

I would be put under anesthesia each of the four sessions. After the first one I had to stay in the hospital overnight with a tube down my throat to make sure my airway would not get blocked when I swelled up. My parents said that was NOT a fun night because I barely slept and did not like that tube. But who would, right?

Each session of sclerotherapy caused me to swell dramatically. My macro-cystic cysts were primarily located around my jaw and neck on my left side. My tongue and floor of my mouth consist of micro-cystic cysts and can't really be injected because there are thousands. The idea was that the injections punched a bunch of holes in the walls of the cysts, making them like Swiss cheese and the medicine would glue the walls of the cysts together so the fluid had nowhere to build up.

Here are some photos that shows post sclerotherapy swelling:

Thank GOD that it all worked and my large macro-cystic cysts flattened out and have stayed that way!

I've had three more pretty dramatic surgeries that I will write more about in future posts.

Thanks for reading!