For the past two weeks it feels like our family has been in an episode of House, desperately trying to figure out the cause of Elle's mysterious symptoms; ringing in her left ear and pain on the left side of her head and neck. It started the Tuesday before Thanksgiving and it's been a extreme gambit of emotions since then.
Elle has had a number of ear problems over the years including a burst eardrum, indented ear drum, too many ear infections to count. She has a high pain threshold which usually means that by the time she says something is hurting it's been going on a long time and will take a considerable amount of effort to remedy. We always know the source of the problem and how to fix. Not so this time around.
Elle and I visited an ENT specialist the Wednesday before Thanksgiving. Ears - Normal. Hearing - Perfect. Yet her left ear was ringing and felt like she couldn't hear a thing. Further tests were ordered for the inner ear. Based upon the results of the next round of tests they ordered another specialized test for Superior Canal Dehiscence, basically where your skull is like swiss cheese - the thought was a hole had been worn in the skull and the buffer for the ear was gone. Her symptoms seemed to match those of SCD.
Elle and I left the office thinking SCD was the problem and a CT scan would only confirm the diagnosis. Devastating news to hear because if in fact that was the cause- it's a chronic condition - surgery is ordered in extreme cases where they perform a craniotomy to rebuild the bone. Not only is the surgery dangerous, but it's used as a last resort since it has only marginal success in patients. Not exactly what you want to hear about your baby. It just all seemed so unfair given everything she has been through so far in her short 18 years.
A CT scan was performed that Friday and the doctor called me Saturday evening with the results - it was perfect as well. The doctor talked to me for over thirty minutes about her symptoms and our next step in figuring out what was going on. Our next we step was an MRI of Elle's brain, looking for a small nodule growing in the inner ear that could only be seen through an MRI. Luckily it came back looking healthy.
Today the ringing in the left ear continues, pain on the left side of the head and neck continues. Life goes on. Our next step is meeting with a TMJ specialist and a Neurosurgeon - hopefully we will find our answer there.
In the meantime, without an cause or solution, we enlisted the help of an acupuncturist. Elle agreed to go even given her total fear of needles - it hurt that bad she was willing to have a bunch of needles stuck in her ear! Thanks to the acupuncturist, Elle has been able to function. The ringing and the pain are still there, but manageable.
Elle has been amazing through this whole thing, finding humor where she can and not letting the annoyance of the ringing, the pain and the unknown of what's causing this whole thing get to her. She's simply amazing.
One of the days she left school for the CT scan she was going to miss a class hosted by substitute teacher...
Elle: I'm going to miss class today
Sub: But we're watching a movie
Elle(dryly): Um - I have to get a test taken
Sub: For what?
Elle(dryly): I'm getting a brain scan for ringing in my ear.
Sub(complete shock): Oh - well I hope it goes ok for you then
Elle: Thanks
I'm hoping for an aha moment like House has as the end of every show and this nightmare will be behind us. Can't wait for those final five minutes to come in this case! Until then I'm trying to not worry about the what if's and concentrate on how lucky we have been on the what it isn't! Anyone else been through this?