Recovery is Long

Although it has been a painful summer, I do have one thing to look forward to--my family and I are visiting Arizona to see Taylor Swift and the Grand Canyon in mid-August.  I am very excited!  I love family vacations, and this is just what I need.  Today, just two days after the surgery and heavy bleeding, I am so sore.  My chest is insanely bruised, and I have to keep constant pressure with a bandage and ice until Monday night.  

The weird thing about pain is, even if you experience a very large amount of it for a long time, it still feels terrible.  I have been in terrible pain for over 6 years, and it still surprises me how much pain my body can produce.  I am hoping after recovery, my pain will subside a bit due to a new jaw.  I have to go back to Denver on Wednesday (for the seventh time this summer) to check up with the doctor.

It's just time to keep on keeping on!

This is my bruised chest two days after surgery 

Arch Bars Gone!

On Friday, I had surgery to remove my Arch Bars (yay!) and get my port scar on my chest revised.  A surgery that was only supposed to take 1 hour took 3.  Although I was under heavy sedation, I kept waking up during the arch bar removal because it was incredibly painful.  It felt like the surgeon was ripping my teeth out.  Afterwards, my mouth and the insides of my cheeks were so raw because of the numbing medicine, but I was thrilled to have those ugly and painful bars out of my mouth.  Seven weeks of arch bars is plenty.

The scar revision took the majority of the surgery time because he was very meticulous when revising.  After we left the doctor, it was already 4 pm, so my dad and I decided to stay another night in Denver.  I lied down on the hotel bed to FaceTime with my mom, and when I sat up to show her my scar it started gushing out blood.  It looked like a crime scene.  I called the emergency line for the doctor and he advised me to keep ice and constant pressure on it until it stopped bleeding.  Finally, after 3 hours of pressure, the bleeding stopped.  This morning (Saturday) I met the surgeon at the office at 7:30 to make sure everything was fine.  He said a blood vessel most likely popped which caused the bleeding.  Unfortunately, I got blood on the hotel bed, and ended up throwing away some of their towels, but at least I am ok!

Physical therapy is still going well, and I am making progress with recovery.  School starts in a month, and I am hoping to be much better by then for my first class (Neuroscience).

Here is a before and after picture of my arch bar removal!

Checkup with Surgeon

Last night, I got back from Denver.  I saw the surgeon, and everything is progressing well, except for my nerve/muscle pain.  I received another injection in my cheek muscles (this time with double the numbing medicine).  So far, it has not helped.

He told me that arch bars wreak havoc on teeth, and I can get them off July 24.  I will have had them for 7 weeks, so it is the perfect timing.  There are spikes on the arch bars that line my gums, and those are killing me!  A week before arch bar removal, I cannot wear any rubber bands at all so that my bite adjusts to its natural position.  The rubber bands make my bite totally even and helps relax my jaw, so it will be an adjustment to not have the bands on.  I am hoping my bite is relatively even!

I will be going under for my arch bar removal, and while I am under, the surgeon is going to fix my scar from my port.  It has a keyloid and it is wide and  ugly, so I am very excited to have a skinny scar on my chest.

I am still on pain killers, but gradually reducing the dosage.  Physical therapy is going well, and I am seeing them twice a week.  I get headaches after appointments, and my neck gets tight, but in the long run, I know it helps!

I have been getting a bit of physical therapy on my jaw, and it is definitely painful and tiring.  There is a lot of hands-on exercises (stretching the muscles, opening and closing, etc), and I can't say it feels too good.  But, I know it will help.

On top of the jaw, I have been having some of my previous stomach issues arise again.  For the past three days, I have not been able to keep food down (even my liquid diet of soups and smoothies), and throwing up is not the best exercise for my jaw!  It is quite painful and the nerves get very agitated.  So, as of now, I am eating very little.

Next week, I am headed back to Denver to see the surgeon to get my belly button stitches removed, and of course see how I am healing.  It's been a journey...

I can't believe surgery was only 3 weeks ago! I still have facial paralysis (my right eyebrow does not move), but the doctor is hopeful movement will return in around 4-9 months.  Pain killers are still my best friend-- I have to take them around the clock to feel comfortable, so I am sleeping the days away.  Summer is not very exciting, but I have gotten out a few times.  It is weird not working and being productive, but it leaves time to study for neuroscience, hang with family, and hopefully get back to 100% (or at least my 100%).  I am experiencing extreme skin sensitivity, which is normal after they cut through all of those nerves and muscle, but it is so painful.  My physical therapists recommends lightly rubbing a tissue on the right side of my face, but even that drives me crazy.  All will take time to heal, but until then, I will persevere!


Here is a picture from my surgery day, just 3 weeks ago!

It's Always Something...

This past weekend, I had to travel back to Denver to see the surgeon because my belly button incision refused to heal.  It was wide open--it was as if I had two belly button!  It was pretty nasty, to be honest, and it was a deep wound.  The surgeon stitched it up, and hopefully it will heal up just fine now.  

I have been having some intense pain in the middle of my cheek.  It is very sharp and even when I press lightly, I twitch and convulse with pain.  Dr. Aragon injected lidocaine and some cortisone in the muscle thinking I was suffering from muscle inflammation.  The injection did not help at all, so that is making me think this is nerve pain.  It is driving me crazy!  It is probably the worst pain since the surgery.  

Overall, recovery is going smoothly.  I am still on pretty soft foods-- smoothies, soup, mashed potatoes.  I am occasionally eating french fries or sucking on soft crackers, but I am really ready to eat a burger or a sandwich!  The arch bars are a pain in my butt, but I am used to them by now.  Right now, it is just time to continue to recover... 

The pain has been pretty bad... I have been on pain killers constantly, and now I am getting a sore throat.  The swelling is not as bad as I thought it would be, but I have some red blotches appearing on my face.  The smoothies, frozen yogurt, and pudding have been going down well, and I am not sick of soft foods just yet.  I have been keeping myself occupied by coloring, watching TV, and sleeping the majority of the day away.  I am still in Denver (I have two appointments with the surgeon next week), and I am so ready to be home.

The x-ray of my new skull!

Surgery Successful

Surgery was successful! Dr. Aragon only had to operate on the right side.  He said this surgery was bound to happen, as when he took the joint out, it was very destroyed.  He believes this titanium join will do me very well.

I have the arch bars in, but I will not have my jaw banded until tomorrow (Friday).  I spent one night in the hospital, and I have been at a constant pain level of about 8/10.  The pain pump and Percocet have been mildly helping, but I have been suffering from intense itching.

I have been on a liquid diet, and will probably continue that for at least a few weeks.  I did have a little fat graft from my belly button to place around the prosthetic joint, so my stomach is a bit sore, but nothing comparable to my jaw area.  The swelling is definitely beginning.

After surgery

Arch bars-- Not yet banded 

I had my pre-op appointment on Thursday, and all is well.  Surgery is still happening on Wednesday, June 3.  There are still some things that are up in the air.  If the doctor cannot get my bite close enough, he will need to do a procedure on my left side, where he takes a chunk out of my jaw and puts a metal plate in.  If the left side is operated on, recovery will be much longer.  The jaw will be banded shut no matter what, but how long and to what extent is still to be determined.

Here are some pictures of my left jaw (which does not have degenerative arthritis) and my right jaw joint.

Here is my healthy left joint. It is rounded at the top.

Now, here is my right side. Was you can see, it is disintegrated. 

This is a side by side of my left and right jaw, but opposite. 

(left picture is right jaw--right picture is left jaw)

Anxiety Running High!

This is the first time I have ever experienced anxiety like this.  Everything is tipping me over the edge, and my emotions are running high.  I think the fear of recovery is the worst-- or the fear of something tragically going wrong.

Having my jaw wired shut for 6 weeks sounds miserable, but the pain, the swelling, the hunger, and the overall boredom is causing much fear and anxiety.  The surgery is in a week, and it is all I can think about.  It keeps my up at night, and everything I think about revolves around this surgery.  Today, I am headed to Denver for my pre-op appointment, so it is becoming more and more real.  I cannot believe in one week, I will have a titanium jaw!

2 weeks till surgery

Back in 2010, I realized my jaw had been clicking and causing me pain, but I put it aside for a while. When I finally told my dentist about it, he suggested I see an ENT who specialized in TMJ. Sure enough, I had been suffering from TMJ at the age of 16, and in 2011 I went in for my first TMJ surgery to pull back my disc.  Unfortunately, it was not successful because we discovered I have degenerative arthritis in my jaw (which causes your joint to disintegrate).  After years of physical therapy, injections, and pain, the doctor, my family, and I decided that getting a right jaw joint replacement was the best idea.

Now, I am two weeks out of surgery, which will require my jaw to be rubber banded shut for 2 months.  The surgeon, Dr. Steven Aragon out of Denver is highly rated.  He helped rebuild the jaw of a victim of the Columbine shooting, and has performed many jaw replacements.  I am confident he will do the surgery perfectly. Of course, it is nerve-wracking to go into this serious surgery (I will be under for at least 8 hours), but I am hoping that in the long run, it helps my jaw pain, and reduces my everyday migraines. 

We are not sure why I have arthritis in my jaw, but we believe it is connected to my other autoimmune diseases.  In 2010, after having mono, I was diagnosed with Dysautonomia, Chronic Fatigue Syndrome, Fibromyalgia, Ehlers-Danlos Syndrome, and Sleep Apnea... along with the TMJ and arthritis in my jaw.  

Throughout the summer, both my mother and I will be updating this blog about my progress.  My hope is for anyone suffering with what I am going through will get some insight on this complicated problem.  It is a big deal, and no one has the answer.  I hope to shed some light on my experience with the recovery, the doctors, and the overall process, and eventually lead someone in the right direction--whatever that may be!