Monday, February 18, 2013

So Here's the Scoop . . . .

Well, I can give you the bottom line results of Anna's appointment today (while it's still fresh in my mind---as we're traveling home!).

  • There is no fracture of Anna's left TMJ (that's a good thing!)
  • There is significant damage to the left TMJ,caused by past inflammation and scar tissue developing (very typical in joints of people with active or past-active rheumatoid arthritis)  That's probably not so good.  This damaged joint has caused her teeth to shift a bit.  (When the doctor and the resident were talking, they said at their first glance, it would appear as if her jaw had been broken.)
  • Although this doctor would recommend replacement of the left TMJ, that is not an option until Anna is 18 years old.  (She is 15 and a half).
  • Until then (possibly the summer between graduation and college), we need to think about orthodontia and probably having the wisdom teeth taken out.
  • TMJ replacements are relatively new, and there is no knowledge on how long they will last.  Even if she has a replacement done at the age of 18, it may likely only last 20 years (they just don't know).  And then she'd be 38 and possibly need another replacement.
So here's more "fodder" for JA parents out there . . . As we were also discussing the fact that we'll probably soon be referred to a doctor at Hershey Medical Center who does both reconstructive jaw surgery and orthodontia together, this doctor brought up an interesting point.  (She also does similar surgeries, but Hershey is so much closer than Philly!)  While surgeons often take bone graft from a rib or the leg to do this reconstructive jaw surgery, there's a question about whether this will cause more issues---you know---using bone tissue from a body whose immune system already tries to attack good blood cells at the joint.  This doctor we saw today said that there is currently much discussion and debate (and no definite answers) among specialists as to whether this is a good idea or not.  I tell you this not to strike a note of fear---but to give you the information.  Something to really think about and pray about as we make decisions for our children.  It's questions and times like these that make me glad we have some time to pray and ponder, and we don't need to make a decision today about this. We didn't discuss this at length (no need to at this point), but it did hold my attention.

After our appointment (really liked this doctor and the resident working with her), we had several hours to spend in Philly until our train departed from home.  So we had an adventure.  I really wanted to take Anna to the Reading Terminal Market (she had never been).  So we asked a lot of "information people" a lot of questions, figured out which bus we needed to ride (such interesting conversation with a woman who was giving me advice and directions on where to get off the bus).  We ended up at the Gallery Mall, and Anna said, "Oh, it's okay if we don't get to the Reading Terminal Market."  But we persevered (despite some REALLY wacky mall directories in the Gallery Mall), and found the market.  As soon as we stepped into the Market, Anna said, "Oh, I'm so glad we came here!"  Such a fun place!  And she recognized it from the National Treasure movie.


Elizabeth said...

Oh dear! Are there options for pain management in the mean time? I have very mild psoriatic arthritis in my jaw and since that is enough to bring tears, I can't imagine how Anna feels.

Tammy Z said...

Yes, Elizabeth . . . Anna rarely has pain (even with active arthritis), so it's not a concern for her at the moment. But the doctor did say that if pain is a problem, there are some things they could try --- like cortisone injections, and I've also heard the sometimes a chiropractor or physical therapist can help with that. We are so thankful that Anna doesn't experience the pain that often comes with active arthritis, but I know that many of you do.

Elizabeth said...

That's amazing she doesn't get pain! She's quite lucky :)