3 jaw surgeries in one year?!

Ankylosing Spondylitis (AS) effects each person differently.  There's no magic cure for those of us that are living with this disease.  It's a trail and error of medication and sometimes changing your life style.  There are some "common" things that happen in those of us with AS such as--

The main similarities that can occur with any type of spondyloarthritis are:
  • Inflammation in the pelvis and spine that usually causes inflammatory back pain
  • Pain and/or swelling of any other joint in the body (hips, knees, ankles, feet, hands, wrists, elbows, shoulders, etc.)
  • Uveitis/iritis , the rapid onset of marked pain and redness in one eye at a time
  • Psoriasis skin rash
  • Inflammation in the intestine (Crohn’s, ulcerative colitis, undifferentiated colitis)
  • Dactylitis, or “sausage digits”, the inflammation along the tendons of the finger or toes
  • Enthesitis, inflammation where tendons and ligaments meet the bone; this commonly occurs at the back or bottom of the heel.
Pain and/or swelling of ANY joint in the body--ANY! While some joints are more "common" than others. For me, I seem to fit the common and "uncommon" category.

Over the past year I've had 3 jaw surgeries.  The 1st was an arthroscopic procedure basically to see what must be done.  The 2nd surgery consisted of one incision in front of the ear, moving the ear back and being able to see the joint.  This procedure was to correct and remove damaged cartridge.  For most patients there is a 90% success rate. I'm not most. The 3rd and final procedure was jaw replacement.  For me, this was a scary decision.  I couldn't find anyone with AS who had jaw replacement.  For those of us with AS, jaw involvement is around 10%.  The joint was totally destroyed by AS and it was the right decision, but actually talking with someone to know what was going to happen was a challenge.  You can go to youtube and see a few folks with jaw replacement videos/diaries but none I saw with AS and all seemed a bit scary.  One week prior to my surgery, I was finally able to talk with someone.  She answered many questions I still had.  At this time of blogging I am almost 7 weeks post jaw replacement.  I am doing great!  Even my DR is pleased with my progress (which I account to being covered in prayer!).  I still have a long recovery rode in my future--I still have inflammation and the muscles/tendons need to heal from being "moved".  I also have numbness which may or may not heal.  Having a numb face/ear is weird.  Another weird sensation is itching...phantom itching.  You feel an itch and carefully go to scratch and can't feel what you're touching....weird is not even a good choice of words for this experience!!  I won't ever be able to open my mouth as wide as I could before surgery either--being a singer this was tough to hear, guess I'll be breaking all the rules of "open your mouth when you sing".  LOL I've also noticed one last thing--I can sometimes be a "mush mouth" and literally spit on someone (accidentally) while talking. oops!  Guess that's the numbness and learning this new joint! 

So for those interested in knowing what they do in a jaw joint replacement keep reading.  I had 2 incisions for this procedure.  One to push my ear back out of the way (moving the ear..what?! and 2x for this) and another in my neck.  The actual joint was specially made to "fit my face/head".  It took approximately 3 months to build. Medicine is amazing!

The actual joint is behind the ear and replacement does not involve the teeth.  My mouth was not wired shut after surgery, but it was during the procedure so that my teeth would stay lined.  I had 4 sores from the screws that held my mouth together.  These healed quickly.  I can occasionally hear clicking, which can happen and may or may not last forever...but I don't hear the crunching/scratching noises anymore or have the extreme pain.  If you have that disorder where you can't stand to hear folks chew...well imaging hearing that every single time you open your mouth!  The actual joint pain, well, that's gone.  There is pain in the muscles/tendons that were all moved out of the way to saw out (now that's a picture) my destroyed joint and replace with a new one!  You can have nerve damage from the procedure and only time will tell if I get all the feeling back in my face and ear.  For those wondering what exactly this looks like--

And no that neck hardware is not part of the jaw replacement--that's a spinal fusion I had a few years back (thanks AS) and there's a post about that as well. My 2 favorite questions I've heard since having jaw replacement--
-Have you lost weight?
       ummm, my soft foods restricted diet--hmmm carbs and dessert LOL
-Was it worth it?  Has it helped?
        I had no choice but to have the replacement and the joint pain is gone now.  Saying that does not mean I have no pain.  That joint that was painful and being destroyed is gone.  I still have a LOT of healing to do in that area so there is still pain there.  Also, don't forget that I have AS and enthesitis is part of that--don't know what that is?   Enthesitis is inflammation of the entheses, the sites where tendons or ligaments insert into the bone. It is also called enthesopathy, or any pathologic condition involving the entheses. The entheses are any point of attachment of skeletal muscles to the bone, where recurring stress or inflammatory autoimmune disease can cause inflammation or occasionally fibrosis and calcification.  So there's that. 

There is NO cure, just managed care.  There is a LOT of trail and error and for me a LOT of procedures and surgeries...but for now, I can say...

I'm doing great! This is my AS life! Yes, I do sometimes think ok, what's next.  I mean, I'm human! But, for now I end with my life motto--

AS, has my body, but NOT me!!


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