Monday, August 12, 2013

Ah! We Have Some Direction! . . . .

So we had the appointment at the Lancaster Cleft Palate Clinic last Tuesday, to discuss Anna's TMJ issues (past active arthritis; significant damage to the left TMJ).   What a GREAT team of doctors and staff---and they are indeed a TEAM.  The primary doctors appropriate to Anna's care were the oral surgeon, the orthodontist, and the plastic surgeon (there were other specialists available, but Anna did not need an audiologist nor a surgeon who specializes in dental implants).  One of the best aspects of the appointment was their candid discussion and the time they spent with us---we didn't feel rushed at all, and they wanted us to understand everything they were saying and recommending and why (I had shared a little bit of our experience with the doctor in Philadelphia and why we had no interest in returning there -- very rushed, didn't elaborate on the reasons behind her recommendations, etc.---left us with nebulous information and no concrete answers).

While these doctors are familiar with the TMJ replacement procedure, but they do not recommend that for Anna unless her TMJs (at some point in the future) stop functioning altogether (and they explained all the reasons why, which I really appreciate and understand).  They DO feel that Anna is a good candidate (and in need of) jaw reconstruction (and orthodontics, which go along with jaw reconstruction surgery).  They would reconstruct both the upper and lower jaws.  This would entail probably about two years of orthodontics, extraction of wisdom teeth, jaw surgery, and then a few months to a year of orthodontics to finish up.   They also seemed very pleased that Anna has just finished up physical therapy to strengthen the muscles which help support the TMJs (they even asked for the name of the physical therapy group, because they said they have not often found physical therapists who have experience with TMJ issues).

For the past few years, I have been thinking about Anna's TMJ damage, wondering what to do and wondering about the timing of everything---and praying fervently for guidance and direction, because I didn't have any answers, nor did I have enough medical knowledge to feel that I had a good handle on the issue or ways to deal with it.  I also found myself overthinking the entire thing and intentionally putting it all out of my mind for weeks at a time---and purposely choosing not to worry or fret (not always easy).

Have you ever had a day/week/moment when things and ideas and thoughts all seem to fall into place and you know deep in your heart that this is what needs to happen?  That's how I felt last week during and after the appointment.  Anna did, as well.  After meeting with the Philadelphia doctor, she said that she didn't feel that she needed or wanted major jaw surgery any time soon.  After this appointment with the team of doctors, it's almost as if she's ready to begin the process tomorrow!  We had a choice to use an orthodontist closer to home (Lancaster is an hour away), but Anna instantly said, "No.  I want to do it here."  (We like the orthodontist we've used in the past, but Anna loved the team approach and the fact that these doctors communicate so well with each other---and promised to keep her pediatric rheumatologist informed---we're usually the ones who are telling one doctor what another doctor has said or recommended).  The only aspect that makes me hesitate just a little is the fact that insurance may not cover much of the cost of the medically necessary orthodontics, and they are EXPENSIVE!!!  (The doctors seemed certain that the surgery will be covered, since Anna has a diagnosis of arthritis and significant damage.)  Much more expensive, even, than the "phase 2 cost" which was quoted to us a few years ago from the original, local orthodontist, and at the time I thought that price was rather exorbitant.

So . . . . where do we go from here?  First and foremost, I continue to pray, and I've been in awe of glimpses of God at work in little and big ways in the process so far.  As long as I continue to see Him working and opening doors of information, we continue to walk in this direction.  The orthodontist said that he is willing and able to write to the insurance companies (Anna has primary insurance and secondary insurance through the state, because of her chronic condition)---to explain why the orthodontics are medically necessary.  Anna needs the surgery, and in order to have surgery, she has to have orthodontics.  The billing clerk was less than optimistic but said we could try if the doctor said that he would write letters.  The team of doctors also talked about needing to know that the arthritis in the TMJs have quieted down for the most part.  So at this point, I'm not sure if we will need and want one more MRI before the orthodontics are put in place (once she has all of that metal in her mouth, we will be unable to do MRIs).  That will be up to her rheumatologist to decide and order.

On a less pressing note, the Lancaster doctors told Anna that they couldn't promise to be finished the process before senior pictures (she's entering 10th grade), but possibly before her senior prom.  Anna has already decided (that afternoon) that for senior portraits, she just wants a picture taken for the yearbook, and we can wait for a more extensive photo shoot after the surgery is done and the braces are off, even if it's after graduation.  She said she's been thinking a lot about what she might look like afterwards, but she has no idea (hence, the patchwork picture at the top---unsure of how her face will look once everything is "put back together).  The oral surgeon was studying Anna's face carefully (Anna told me later).  He says that whenever he looks at patients, he sees visions of what they will look like with reconstructive surgery.  He wasn't kidding, and I believe him---he's that sort of person.

Thanks for your continued interest in Anna's JRA Journey.  We are always grateful for your thoughts and prayers as we travel this unfamiliar road, and we are also grateful for the love and support we feel from so many in our local and internet communities.

1 comment:

Elizabeth said...

The team sounds grand! It sounds Anna is in good hands with them. I recently found out I have a slipped disc, erosion from years of arthritis and other jaw problems, so I'll be going down the same route soon: I have an appointment with maxillofacial and oral surgeon team. I'm praying for Anna and your family, God knows this can be a worrisome time.