Cholesteatoma

Taylor has had several hearing tests done with Audiology over the past four years, and they have always indicated fluid in her right ear. It was never really causing any problems so we were told we didn't need to do anything about it, that it would naturally resolve itself at some point. However, at a regular appointment with her pediatrician, he noticed signs of quite a bad ear infection in her right ear. He prescribed antibiotics and saw her afterwards to follow up. No change. In fact, after three rounds of antibiotics there was no change. So he referred us back to ENT (ear, nose and throat doctor) at the Children's because he didn't know what else he could do for Taylor. So at our ENT appointment, Dr. Brookes suggested at this point that we go ahead with Myringotomy surgery (ear tube placement) to resolve the drainage and persistent ear infection issues.

Taylor went in for that surgery on November 19th. It's a very quick surgery, only 5 minutes, so I wasn't waiting long at all before Dr. Brookes came out to see me when he was done. He told me that the left ear went fine, he placed the ear tube in it, but that he ran into a surprise in the right ear. When he made the cut in the eardrum he discovered that there was no fluid behind it, and no infection either. He discovered a cholesteatoma, which is a skin growth that occurs in an abnormal location, the middle ear behind the eardrum. Hers is congenital, it's been growing since before birth. Cholesteatomas often take the form of a cyst or pouch that sheds layers of old skin that builds up inside the ear. Over time, the cholesteatoma can increase in size and destroy the surrounding delicate bones of the middle ear. Hearing loss, dizziness, and facial muscle paralysis are rare but can result from continued cholesteatoma growth. Dr. Brookes told me that because it will continue to grow (and could eventually affect the brain and cause meningitis), she would need a further surgery to remove it, called a tympanomastoidectomy. This surgery is about 3 hours long. Not exactly what I was hoping to hear when the doctor came to meet me after what was supposed to be a straightforward ear tube placement. But at the same time, are we ever grateful that this was discovered now.

Taylor's file at the Children's (whoa!) and heading off to surgery for ear tube placement

Next up was a CT scan which was required to get a clearer picture of how big the cholesteatoma is and exactly where it is. For the scan they put her into this sleeping bag type thing, zipped and buckled her up then vacuumed all the air out so that she was sucked in tight and couldn't move. She did awesome, she was still long enough for the picture that they didn't have to sedate her. When we met with Dr. Brookes a week after the scan, he told us that the mass has filled up all the empty space of the middle ear behind the ear drum, and continues on back behind the ear. There is already erosion present which means that some of the bones of hearing have been damaged. What came as a surprise at this appointment was finding out that she will need a second surgery about 6 months after the first one. Cholesteatomas have a nasty habit of growing back, so they need to go back in 6 months later to see if there's more skin growing, and if so, to remove it. At this second surgery is when they typically do reconstruction, as bones will be removed in the initial surgery. This all sounds pretty complicated and intricate.

Taylor the morning of her CT scan, love the bedhead!

This video is an excellent description of a cholesteatoma and the surgery (tympanomastoidectomy). You can watch it here.

Taylor goes in for her surgery first thing tomorrow morning. I will post an update following the surgery. Stay tuned and please keep our little supergirl in your prayers.