Surgeon Discussions

The roller coaster of emotions continue and I go through this process.  A unique blend of fear and excitement rests in the pit of my stomach. 

This week has been hectic.  Tuesday night was open house and I didn’t get home until close to 9pm.  Parent turn out was low because I teach juniors and seniors, yet everything went smoothly.

                               My classroom :) My open house power point is ready to go!

My desk 

Wednesday I left work five minutes early to go to Miami to see my surgeon.  They asked me to bring my patient folder with the surgery information, so I did.  It had been awhile since I even opened that folder.  In fact, I wasn’t sure if I was ever going to need it again. 

Normally my surgeon is running 1-3 hours behind, so I came with a clipboard, a purple pen, and approximately 36 essays to grade.  This time he wasn’t running late :)  Well, 15 minutes but that doesn’t count.

I had a set of panoramic x-rays and pictures taken.  Then I went into the room and another surgeon was waiting for me.  He did an exam, asked questions, and reviewed my chart.  Then the head nurse came in and we all began discussing the surgery, what I need to do pre operative, and what doesn’t need to be done again.

                                                          Panaramic x-ray machine

Last year I had everything except my pre-op clearance done when we found out about my metal allergies.  I will not need another CTA (cat scan with contrast) or to visit the nueroradiologist again.  I will need an updated CT and impressions.  We need to know how much my jaw has shifted within a year and whether or not I will need braces.  Last year, I wasn’t going to need them but this year I might.

My surgeon arrived and we began discussing the surgery.  The metals testing stumped him, as I had no reaction to the patch test.  He suggested that I get tested again just to see the results.  This tests costs close to $600 and insurance doesn’t cover it, so I did not want to have it done again.  My main argument for not doing it was even if the test now shows I am not allergic to anything, how do we know this is right?  He agreed and we decided to go ahead using the titanium that the FDA approved me for.  Last year I had all my questions answered, but I did learn a few new details this time:

1)   Because the nueroradiologist puts the stints in the day before, I will have to stay in the hospital the night before the surgery.

2)   After I am put under, the surgeon will wire my jaw shut and in the position that he wants it.  If all goes well, I will be unwired by the time I wake up.

3)   The surgery takes 7-8 hours.

4)   I will have to take amoxicillin to prevent infection when I go to the dentist from here on out.

5)   Other than that, all the normal warnings were given.

                                              This is what my implants will look like.

TMJ concepts actually makes a replica of my skull and places the custom implants on it (don't worry, I will get a pic of it!)

As of right now I am waiting for my next set of doctor’s visits for the CT and the impressions. That will also be the day we pick a surgery date.   

So, until everything is set I am going to work on spending time with my family, my friends, and not stressing.  I will continue to participate in activities I love such as volunteering for 100+ Dogs of the Everglades and exercising.  I will update my blog as soon as I have more information.

UPDATES, UPDATES, UPDATES

This is the long overdue update.  Towards the end of the 2015/2016 school year my friend, Vanessa, and I planned a trip to Ireland.  I knew that I wasn’t having surgery, so there was nothing I could do about my jaw.  Before the vacation, I called the surgeons office and left a message for the head nurse because I needed muscle relaxers.  In addition, I sent her an email.  There was no response.  I took it as a hint that they were done treating me until there was something they could do. 

The vacation was amazing.  We drove through southern Ireland and stopped at all the places we planned to see.  The weather was always perfect for pictures and sightseeing.

Since getting the news last October that I am allergic to nickel and unable to get the implants, I have really tried to come to terms with the fact that this is the way I am always going to be.  It’s been rough, but I knew I had to except this fact.  My surgeon needed to fill out pages of paperwork and send it to the FDA.  Once that was complete I would be placed on a wait list for titanium implants.  The FDA only allows 5 titanium implants per year, so I knew I was probably 5 years from hearing anything. 

Some of my friends and family felt as though I needed to bother the doctor to get the paperwork done, but I refused.  I had to decide what was best for me, my mental health, and my jaw; therefore, I decided to relax and let go of stressing about surgery and the ifs.  I put it out of my mind, and realized that maybe God had another plan for me.  Maybe, while I was waiting, something better would come out.  Who knows?  Yes, I was still in pain and having problems, but I was just going to have to suck it up and wait.

August 15, 2016 was the first official day back to school with children.  This year I teach two twelfth grade honors classes and three junior regular classes.  I am also on the Professional Development Committee, which meets after school several times a month.  In addition, I’ve taken on being the 11^th grade Professional Learning Community leader.  Plus, I am the Criminal Justice club sponsor.  I’ve also decided to renew my National Boards, which is a huge pain in the butt!  This year I’ve signed up for quite a bit, yet I know that it is going to be my best year teaching high school yet. 

Well…sometimes things just don’t go as I planned.  On 8/17 I received a phone call from the head nurse.  Apparently she’s been trying to reach me.  I was one of the five people chosen for titanium implants!  I am excited, scared, and stunned all at once.  I could barely believe what I was hearing.  I made an appointment for 9/7/16 and will see what the next steps will be.  Depending on what decision is made, and when the surgery is set up, I might not be able to renew my boards.  That’s okay with me.  Right now I am working on not stressing and going with the flow. This has been a valuable lesson about timing and being patient. 

What now?

Up until a few weeks ago, I was working on my pre- surgery appointments.  It was necessary to once again drive back to Miami to have my blood work re-done, and once again ship it to Orthopedic Analysis for panel two metals testing.  Begrudgingly, I did this.

After my CAT scan with contrast, I only had one other random doctor’s appointment, which was at the nueroradiologist.  This appointment was also at the hospital.  He explained how he was going into my veins through both sides of my groin, snaking a catheter up my body, and putting stents in to block blood flow on both sides of my temporamandibular joint.  I had many questions, and he was very patient, informative, and nice.  He decided that he was going to do this the morning before my total joint replacement (TJR) and that I would be able to leave the hospital around one.  I was excited because that meant I could eat anything I wanted to the day before surgery.

                              This is a picture of part of my CTA results that were on the dr.'s screen

After that appointment all I could do was wait on my metal testing results.  Friday, October 23^rd, I went to work.  It was a planning day, and I had several meetings I needed to attend.  After my first meeting, I called the lab and they said they would email the results shortly.  I anxiously participated in my second meeting.  About 30 minutes into the meeting, my phone vibrated and I knew it was the results. It was exciting to realize that my surgery date was going to set within the hour and that my life was going to be changing in a positive direction once I was healed.

I opened the email and downloaded the attachment.  I was stunned at the results.  I am allergic to a variety of metals, including Nickel, which is what the implants are made out of.

                                                 These are the results-I was shocked

I barely held it together for the remainder of the meeting.  Shortly after, I left work and called my surgeon.  The lead nurse explained what I already knew to be true; I am not a candidate for these implants because of my allergy.   His office uses TMJ Concepts (the name of the company that makes the implants) and they only make 5 titanium implants per year because that is all the FDA is allowed.  My name will promptly be placed on a waiting list; however, it is going to take several years.  There is another company that creates TMJ implants, but my doctor doesn’t use that company.  In fact, most places do not use that company. 

There are moments when I feel like this

I was devastated, and it felt as though any hope that I had left had vanished.  I was nauseous just thinking of my future.  I had to face the facts, this means that I am going to live in constant and sometimes unbearable pain, I have to adhere to my soft food/liquid diet (I was cheating on occasion because I thought I was getting a new and improved bionic jaw), and that my jaw can potentially get much worse before this is all over. 

Even though this is disheartening news, even I can acknowledge that finding out I am allergic to Nickel is a blessing.  If my doctor were not as thorough as he was, and many are not, he would have just performed the surgery.  Perhaps everything would have been fine at first, but eventually I would have exhibited signs of an allergy.  He would then have to go in, remove the implants, and wire me shut until he could decide what to do. Because of the surgeon’s professionalism, attention to detail, and his perfectionism, I didn’t experience that.  I am deeply thankful for his expertise. 

I also appreciate the support of my friends, family, and pet.  Even though most do not know the news because it’s been upsetting to talk about or even write about, they are always there for me to help me get my mind off of things or to plan fun activities.  They are also understanding of my diet and my limitations. 

Last weekend, I went camping with friends :)

Right now I am in a state of disbelief and am trying not to get depressed over the news.  I have decided the best course of action for me is to do nothing at the moment.  For the past few weeks I have not done any research, worked on my blog, bothered my doctor, etc.   

This is how I am dealing with everything at the moment!

In fact, this will be my last blog post for a while.  While I was using this in hopes that someone else who has the same degenerative joint problem as I do would find it helpful, I recognize that at the moment I am going to have patient and wait until I have further news in order to better inform other’s who have the same issue that I do.  My goal is to one day have a successful surgery and be able to share it with others who have the same problem.  Until I have more news, I am stepping away from my blog.

The Waiting Game

What I am learning, is the bigger the surgery the more hoops one must jump through.

A few weeks ago I drove to Miami to get my blood work for panel two testing using the Orthopedic Analysis test kit.  Insurance didn’t pay for it, so I paid nearly $600 out of pocket for this test.  The nurse took four vials of blood, put it in the box, gave me the box, and I went to Fedex and shipped it to the company. 

              This is the box it that contains the needle, vials, and shipping information.  Once the blood
                 is drawn the nurse seals it in another container within this box and hands it to you to bring
                 to FedEx to ship :)  

I began patiently waiting for the results, which I knew were going to tell the doctors I do not have allergies to metals.  I already had the patch testing and have never had any problems in the past.  Approximately one week later, the nurse called and told me that I tested positive for being allergic to ALL the metals in the kit.  That means I am allergic to aluminum, cobalt, chromium, iron, molybdenum, nickel, vanadium, zirconium, titanium alloy particles, cobalt alloy particles, bone cement particles, and bone cement liquid.  The stunned company personally called my surgeon’s office to discuss the results.  No one has ever seen results like this, and no one can explain how it happened.  They decided to send another test to my surgeon free of charge and I have to take it again.  Meanwhile, I can’t set a surgery date without the results.  Ugh.  This is frustrating.

I felt like having a temper tantrum!  lol

Last Tuesday I went and had the test re-done.  I am now anxiously waiting for the results and praying everything turns out okay. 

I also had to go for my CTA of my face/neck and brain.  A CTA is a cat scan with iodine.  I have never had this kind of procedure before and had many questions.  My good friend Kristy had one done on her shoulder and she literally said, “The needle they used was this big (imagine large hand gesture) and it left a hole in my shoulder.”  Of course, I imagined a huge needle stabbing me in the face.

"The needle was this big"

I didn't take a picture of Kristy making the hand gesture, but it was the same one this really cute baby monkey was making!

Other people told me I would taste something funny and to breath through my mouth.  I really had not idea of what to expect.  Last Saturday, I drove down to Miami and had the procedure.  Though I needed to be there at 7:30 and they told me I wouldn’t be done until noon, everything went rather smoothly.  I waited longer to fill out paperwork and then again afterwards, than the actual CTA took.  It didn’t hurt, it made me slightly warm for a few seconds, and I did not taste anything funny.

The actual CT Scan machine

The IV they put in my arm.  At this point they have only flushed it with saline, when I went back for the scan, they hooked the end of it to the Iodine Machine (I'm sure it has a technical name, but I just don't know it)

Now it is just a waiting game.  I need the results from my allergy test so that I can schedule the surgery.