Hello! I am writing to you about a specific topic that isn't really well known. It's called an ABC Cyst also known as an Aneurysmal bone cyst. This type of cyst naturally occurs in the bone and changes as a person ages. These types of cysts are benign, blood-filled, and fibrous which means they can expand and cause swelling and breaks. Unfortunately, Ellis has one. His is located around the growth plate of his distal humorous (near the elbow).
How Do You Know If Your Child Has One?
This is an excellent question and the real answer is you don't. We found his cyst accidentally. I will honestly never forget the day. We had this white gate in the kitchen to keep him safe when I was cooking but when I wasn't cooking we kept the gate open so he could get in and out of the kitchen to tell us when he was hungry or thirsty. One day he tripped over the gate and landed on his elbow. We knew something was different about this fall because his cry was different and he carried his elbow and would barely interact with us. So, we went to the ER and had it checked. We waited for over 6 hours to have that checked for them to discharge us with a sprained elbow diagnosis. After two more days of Ellis acting strange, I called our pediatrician and he wasn't convinced that the arm wasn't broken, so he ordered his own x-ray. That is when they found the cyst. (I want to point out that the ER never told us about a cyst, so I am thinking they never even looked at the x-ray). Our doctor referred us to a specialist in Morgantown, WV at Ruby Memorial.
How Do They Fix The ABC Cyst?
Long story short, they don't. ABC cysts are interesting and location is everything. Most ABC cysts are found in the spine. Unfortunately, Ellis's ABC cyst is located in a very high-traffic zone complete with new growth, increased amounts of blood flow, and lots of risks which was the elbow. There are several treatment options, but currently, our doctor was only comfortable with one, Sclerotherapy.
Sclerotherapy is a non-invasive or non-surgical approach to health ABC cysts. They take a special machine and inject doxycycline into the cyst in order to promote the creation of scar tissue which will eventually hard and calcify into new bone. Odds are not in our favor though and most ABC cysts grow back 40-50% of the time. Last August Ellis underwent this treatment and the cyst grew back and grew back with vengeance. We knew that would be an option but we hoped it would work. There are other treatments which include curettage and bone grafting, cryotherapy, and bone widening, however, they are very risky. The second option was curettage which involves cutting open his arm and then bone. From there they drain the blood and fill it. The risk is loss of blood and for Ellis and his young age, the risks are higher which is why our doctor has refused to complete the surgery unless Ellis would break the bone into a compromising situation. Then, he would operate because it would be a necessary procedure.
What's Next for Ellis?
Ellis has broken his arm 4 times in one year. Three breaks were caused by tripping and one was the break that needed to occur for the sclerotherapy. That's 4 casts in one year. It's difficult to watch. When he doesn't have the cast on we all live in fear especially when he falls. He also has a huge lump on his right arm, where the cyst is. Please keep in mind that the cyst is inside the bone, so when the bone expanded, so did the skin and the muscle so he looks like he has a huge muscle (as my husband calls it). The elbow also does not extend fully. It's frustrating, it's concerning, and it's definitely an ongoing issue in our home. It's also hard because Ellis is nonverbal so we have no idea how he is feeling and or what it feels like and all we go off of is his nonverbal cues.
This is where our journey continues. We are in cast number 4 currently and are waiting to get it taken off in 2 weeks. We continue to monitor it and hope we don't have the "big" fall and have to have intense surgery, but knowing at this point we just wait until puberty hits and to see where that cyst travels is quite the anxiety rollercoaster.
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