Raymond has one irregular ear. There is a skin tag, a “pit” leading to the sinus and a narrow ear canal on his left ear.
At our first pediatrician visit (when he was six days old!) our doctor took one look into the ear and immediately sent us to the ENT. The ENT was awesome and gave us some information on watching the pit as it could get infected, removal of the skin tag (cosmetic and optional) and said we would keep an eye on the ear canal. Today I remembered that at that time he said we would consider options closer to one year old.
We were put on a follow up plan with him to keep an eye on the ear. In the second visit, when Raymond was five months old, the ENT explained that outer and inner ear development happens at different times and that the irregularities did not mean that there were inner ear problems, but they might. So we needed to keep an eye on his hearing and know that if there are questions we would have to have an MRI or CAT scan as you cannot see through the ear canal.
Yesterday I went in for my third follow up visit, which was aptly timed as I wanted to follow up on Raymond’s recent ear infection and alternative treatments. The good news is that the right ear is totally clean and from what the DR can see of the left ear it is clear too – without any leftover fluid from the infection. And Raymond’s hearing is great!
I am, however floored by the news regarding the ear canal. The ENT told me that he needed to send to a pediatric Otolaryngology specialist and surgeon that specializes this sort of problem. I had no idea that we had a problem; I thought we just had an irregularity. I think I made him repeat himself at least three times as I was so floored by what he was telling me.
Apparently Raymond needs to see the specialist for evaluation, including ear imagining (i.e. strap him down and put him in a machine), and possibly surgery at age 4 to enlarge his ear canal. It is most likely that this narrow canal will cause hearing problems when he is older, the canal will be totally clogged with wax, impossible to clean and no air will be able to get to the ear drum. This is not a certainty – but my ENT would not give me any percentages and consistently said I needed to see a specialist. (I thought he was the specialist!?!?!)
Per the ENT, the surgery is “a major procedure, a much bigger deal than getting tubes put in your ear …” We should go ahead and start the process of meeting with the specialist to get as much information as possible, both on the procedure, statistics and Raymond’s specific case (have images of how the canal is developing, if the inner ear is effected and if his hearing is effected) so that we have time to weigh the facts to make our decision. Age 4 is optimal for the surgery because the ear canal has grown enough to determine if there is definite need and is still growing so it is malleable for the procedure. The procedure is cutting into the ear and manually making a bigger hole from the outer ear into the inner ear. At this time we would also have a pit and skin tag removed.
After hearing all of this several times yesterday, talking it through, and thinking about it all day today I am still floored. At no point have we ever discussed anything this major with the ENT or our pediatrician. I have put a call into my pediatrician to talk it through with him. I am scheduled to see the specialist, Dr. Austin Rose at UNC Dept of Otolaryngology in the Neurosciences Hospital on January 14. We will use this visit to ask questions and get more information. I am not submitting Raymond to any “imaging” until I get a much better handle on what is really going on here.
I do like the ENT and I am certain he didn’t want to sound the alarm and make me worry before he was certain that the canal wasn’t growing. But I seriously could have used some sort of heads up on this. I guess the next three years is some time to get informed and process what is going on.
