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. 

Un-emotional

My best feature use to be my smile, and I smiled all the time.  Over time that has changed because the surgeries have changed not only my smile, but also the shape of my face. 

Presently I smile as much as I can.  Of course, there are times that I can’t.  Smiling is physically painful for me.  If I go out with friends and smile a lot I regret it the next day.  I wake up and my entire face aches and throbs. 

In addition, I work at a local high school and attempt to smile while I teach; however, I can’t.  This is not to say that I never smile, but I can’t always smile when I want to.  Sometimes my face hurts too much and I am physically incapable of smiling.  I sometimes wonder if my students think that I am constantly unemotional or in a serious mood?  I try to use sarcasm and humor to make up for my lack of smiling, but it is not the same.

On the contrary, I absolutely, positively cannot cry.  According to many on the Internet, it takes 17 muscles to smile and 43 muscles to frown.  While, I do not know if this is accurate, I do know that it kills me to cry.  Once I start crying, I typically can’t stop because the pain from crying is so great.  Now some feel that crying is not a necessary emotion, and they believe people can show sadness/frustration in a variety of ways.  I am not a big crier; however, I would like to cry when it is appropriate.  For instance, the other day I received bad news about someone I knew.  Instead of crying, I took several deep breaths every time I started to get upset, which is not the same. 

I am hoping that after I am healed I will be able to smile without worrying about how much it will hurt later.  I want to take the simple act of smiling for granted once again.  I use to love smiling. 

All in all, I just want to be healed.  I want to be able to appropriately show emotions.  I don’t think that is asking for too much.

Let’s talk food

If you are on a diet because of you TMJ/TMD, I feel your pain. 

I am 5’5’ and struggling to stay a healthy weight.  According to the Internet, someone my height should weigh 113-138 pounds.  According to my general doctor, I should weigh 120-125 (& she has asked about my eating habits and dropped hints about an eating disorder).  Currently I am at 112 and am loosing weight every week.  I am too skinny, and know that I look healthiest at 120-125. 

Now I realize that the majority of people I know cannot relate to my problem. Lol.  Many of my friends, colleagues, family, and neighbors say that they wish they had my problem.  I understand that dieting is the norm; however, I am doing the opposite. 

At the moment, I am eating 3 meals a day and a snack.  For breakfast, I always eat yogurt.  It’s just a habit.  It’s quick, easy, and I enjoy it.  For lunch I eat a sandwich.  For dinner I eat a normal, healthy meal.  I am attempting to eat unhealthy.  Though that sounds odd, I am one of the few people out there who truly loves healthy food.  If I was able, I would eat salads and vegetables all the time…but I can’t.  Today I even bought ice cream in an effort to gain some pounds.

My goal, before surgery, is to gain weight.  I want to be at 125 when I have my total joint replacement.  I recognize that I will probably loose 10 pounds.  I am aware that I will be on a liquid diet for an extended amount of time, and it will frustrate me.  However, I also grasp that when I am completely healed in a year or so I might be able to eat like the average person.  I just don’t want to go into surgery at 110 pounds and lose another 10 pounds.  That is ridiculous. 

 I am a picky eater, but there are foods I can eat. 

First, people who have jaw problems are on different diets.  If you are having issues here are some foods to avoid:

Gum (always a big NO)

Bagels

Apple

Baguettes

Raw carrots

Celery

Corn chips

Corn on the cob

Hard breads

Hard candy (if you chew on it)

Jawbreakers

Jellybeans

Licorice

Now and Laters

Nuts

Peanut Brittle

Pizza (or just the crust)

Popcorn

Pretzels

Raw Veggies

Salads

Snickers

Skittles

Starburst

Sugar Babies

Taffy

Tootsie rolls

Chips

Steak

Pork

Hot dogs

Crackers

Hard cookies

Cheese (might be too chewy)

The list goes on & on & on

I try to remember if it is gummy, crunchy, or requires a lot of chewing, I can’t eat it.  Also, if I have to open my mouth real wide, I can’t eat it.

Is the restrictive diet annoying? Yes.  Do I ever crave food that I can’t eat? Absolutely.  Do I ever cheat?  Well….every once in awhile (especially now that I know I am having surgery, but up until I had decided I didn’t cheat).  Honestly, when I do cheat I MUST take a muscle relaxer and I sometimes have to ice my face.  After surgery, I will not cheat.  I will not even think about cheating.  I will not even complain about foods I cannot eat (okay, that might be a bit of a stretch after awhile).

There are times you might go out to eat with friends or colleagues, and you might be unsure if you can eat something at the table.  When this occurs, I either ask someone who is eating the same thing to tell me if it is soft or I reach over and nonchalantly touch it.  Even French fries can be too hard for me to eat.  I test all my food because I have made the mistake of biting into something I assumed was soft (a hash brown) and it was very well done.  If I get a large burger or am at an office party where a sub is served, I will either cut it into pieces or pull it apart and eat what I can separately.

 I use to be embarrassed about my eating habits, but it no longer bothers me.  Most people around me know that I am on a special diet and understand that I am not being rude by touching my food, or pulling it apart, or whatever odd things I have to do to make certain I can eat it.

What foods can someone with TMJ/TMD eat?

Chicken

Hamburger meat

Fish

Creamy peanut butter

Super soft cookies

Eggs

Chocolate (if it’s too hard, I pop it in the microwave for a few seconds)

Instant breakfast

Soup

Yogurt

Ice cream

Pancakes

Muffins

Cake

Beans

Rice

Soft, cooked veggies

Cold cuts

Turkey

Some fruits (I would cut everything up and leave off the skin) (I can’t eat apples)

Potatoes

Macaroni/pasta salad (you might have to avoid some ingredients)

Cheese (can be a bit chewy for me)

Cereal (must let it got soggy before you eat it)

Hot cereal-grits, oatmeal, cream of wheat

Quinoa

Pasta-lasagna, macaroni and cheese, spaghetti, etc.

Risotto

Canned tuna/chicken

Cottage cheese

Tofu

Nut butter

Creamed spinach

Avocados

Pudding

Jell-O

There are still plenty of foods a person with jaw problems can eat.  Of course, what I might be able to tolerate someone else might not be able to.  Each person is in his/her own unique situation and knows what is best for them.

For my last birthday, my mom asked me if I wanted one of those high-powered blenders.  I told her no.  I was against paying a high price for something I probably wouldn’t use that much.  She explained that Kohl’s was having a sale and she also had a coupon.  I suggested that she save her money and just buy me the lipstick that I wanted.  Well, I went to her house one day after work and she and my dad bought me the Bullet blender.  I brought it home and read the instructions. 

If you do not have a high-powered blender, I suggest you go and get one.  They are amazing and there are millions of recipes on the web.  I am a fan of making yogurt smoothies, but you can make soup, meals, nut butters, etc.  I love it!