Every kid has zits right? I sure did, and all my friends I knew did too. But one day, after a sleepover, I noticed a big, ingrown pimple by my ear. It almost felt like a blood blister, but I hadn’t had any trauma to my ear. It was getting bigger, and when it had grown to the size of a pea, my mom took me to the walk in clinic. We met with Doctor #1, who didn’t really know what it was, so he just put me on antibiotics. A few weeks later, it had grown more. We went in to see my general practitioner, Doctor #2, Sharon Dunkel.  She referred us to Doctor #3, Aaron Porter, an ears, nose and throat specialist. We spent over four months going to see Dr. Porter, who thought it was some type of cyst. By this point, the cyst had grown to the size of a Band-Aid, and had liquid inside of it. He thought it would be best to drain the cyst, so he inserted a small blue tube, and sent me home with it in for a week. Every day I had to drain it, and keep it covered. After the tube was removed, the liquid came back, even bigger this time. The cyst now ran the whole length of my ear. He thought it would be ample to try another drainage system, this time a piece of latex was shoved up my cyst. After two weeks of having the latex drain in, he took it out. It came back again. He was ready to take me into the OR and operate, but my parents and I thought it would be better if a dermatologist would look at it before we operated.

We wanted a second opinion. So we were referred to Doctor #4, Beth Honel. She wanted to cut it right out in her office, but we were very nervous and I wanted to be put under general anesthesia for the surgery. We then went to Doctor #5, Diane Schmit-Kringes, by referral from the dermatologist. She was a plastic surgeon. The first time we saw her, we told her that we were there to have general anesthesia, and the dermatologist before didn’t operate in the OR. She ordered a CT scan. When the results came back, we were shocked. Dr. Schmit-Kringes said that my facial nerve was very close to the cyst, and to cut it all out in an office would have resulted in nerve damage. She decided she wasn’t the right person to operate either, and we were referred to Doctor #6, Sean Blisnicoff. He had seen one or two of these cysts before, but wanted to let it grow bigger before he operated so he would clearly be able to see where all of it was.  That way, he wouldn’t miss any infected cells. We waited a whole summer for it to grow, and it didn’t. It was still present, the whole length of my ear, but hadn’t grown since we had seen Dr. Blisnicoff. In the early fall it had developed a black mark in the middle of the cyst, so we went to see a new dermatologist, Doctor #7, Kelly Kimberly. She wanted to take a skin biopsy of the black area and also refer me to an ear, nose and throat plastic surgeon.

We opted out of the skin biopsy because we were going to another doctor. All that poking was making me mad! Doctor #8, Lesley Soine, was the best we had found up until this point. She said she would operate on it, but I needed to have an MRI first. The operation went well, and things seemed to be healing nicely. Unfortunately, three months later, the cyst was growing back, this time worse than ever. It had grown all the way down to my mandible, and was possibly becoming wrapped around my parotid gland. I was starting to have hearing loss in the affected ear. We went in for surgery a second time, and things seemed to go well. The odds were extremely low for it to reoccur, but it did.

 

At this point I needed another MRI, and another referral. This time the referral was to Doctor #9, Dr. Tibesar, in the Twin Cities at Children’s Hospital of Minneapolis. This doctor finally gave us a definite diagnosis of a First Branchial Cleft Cyst, Type 2. During the surgery he had to dissect my facial nerve, and remove my parotid gland. I stayed in the hospital for two days after the surgery, and was lucky my facial functions weren’t impaired. Things have been going very well since then, except a persistent rash. We went to Doctor #10, Rachel Ness, last week to see if the rash was an allergic reaction to the deep suture stiches. She numbed me with Novocain and dug around to find a stitch, and removed it. Now the goal is to wait and see what happens with the rash. With over three years of doctors and reoccurrences, we are all really hoping it doesn’t come back!

 

So what causes such a terrible malfunction in the human face? First Brachial Cleft Cysts are very hard to diagnose. They are often a result of persistent vestigial structures from the time the patient was in utero.  The ectodermal (the outer germ layer in the embryo) part of the first brachial cleft does not close properly during development in the fetus. There are two types of first brachial cleft cysts, type 1, which is characterized by occurring in the preauricular (having to do with the ear) region, and laying lateral with the facial nerve, and type 2, when the anomaly appears posterior or inferior to the mandible. It is important to treat these cysts as soon as they are discovered, because the longer they are left or tampered with, the more complicated their sinus tracks and canals can become. My cyst lasted much longer than normal, and had lots of extra complications. I was lucky that the cyst did not become wrapped around my carotid artery or spinal cord.

Have you ever heard of this kind of cyst? Do you know what it’s like to be in a doctor’s office all the time? It can be quite tiring. How would you feel if your child had to have their face cut into multiple times? What other information can you add to this disscussion? What questions do you have?