I was a Code Blue

A code blue is not the type of code that they call when your heart stops. That’s the only code I knew existed. So when I heard “Call a code” come from my doctor’s mouth I was even more terrified than I was already. I had gone in for a regular MRI with contrast. “No problem,” I thought, I had done this many times already and had contrast before at age 15. When I got there, they inserted the IV port with no problem, much to my surprise, with my tricky veins. After that, they came in to make sure I had no metal on my body. The man was very cheery and said, “I can tell you’ve done this before!” Apparently I didn’t need to change into the usual hospital gown because I was in “MRI appropriate” clothing.

The first hour of the MRI went by without incident. However the last 30 minutes required the contrast dye to check the veins in my head and neck. The nurse administered in the contrast dye and put me back into the MRI machine. The second she started the next scan I knew something was wrong. I started to feel the blood drain from my face and my throat and mouth began to itch. I squeezed the call button frantically and informed her that I was going to puke. She ran in and tried to quickly get my head out of the brace it was in so I didn’t throw up lying on my back. After she began fanning me and I took some deep breaths, the feeling of nausea began to subside…but the feeling of itching inside my mouth and throat began to intensify. By the way the nurse was looking at me I knew something was wrong.

Then I noticed that my field of vision was rapidly decreasing; my eyes were swelling shut. It was then that I realized I was having an allergic reaction. A nurse walked by that was leaving for dinner and casually asked, (not knowing what was happening yet) “Need any help in here?” My nurse responded with a frantic “YES.” The other nurse realized what was happening and helped wheel me out into the hallway. That’s when everything began to get really frantic. As I felt an intense itching move from my neck down the rest of my body, the nurses began putting ice packs on me and removing my socks. They were franticly trying to cool me down. This particular part was embarrassing for me because on one foot I was wearing a teal fuzzy sock. On the other foot I was wearing a fuzzy black sock and below it, a normal white ankle sock. The nurse took off the two fuzzy socks and left. Then she came back and looked, I’m assuming, confusedly at my remaining sock. Later, it made me think of the movies where mothers yell at their daughters to always look nice, because even in an accident there could be a cute EMS worker.

One nurse shouted for someone to grab “the gray box.” She then got more brusque when the instructions weren’t followed immediately. That’s when the doctor arrived and ordered 50 ml of Benadryl. It was put in my IV with no effect, besides a small decrease in my anxiety. After seeing this, he called a code. That meant a switch was flipped that started a blue flashing light above my head. I didn’t hear this but apparently in the waiting room over the intercom an announcement was made that there was a “Code Blue in the MRI screening room”. My poor mom started to panic a bit knowing my propensity for bad reactions. That’s when about 20 doctors and nurses began running to my location, carrying all sorts of crash carts. That’s when I started to cry silently…this didn’t look good.

All of the doctors crowded around my bed. One asked if my voice was usually so low, which made me realize it had dropped a couple of octaves because of the reaction in my throat. I told them no, it was much lower which added to their concern. They decided I needed epinephrine. This was a bit of a relief to me as I figured that would just fix everything. When they put it in my IV, the nurse (the one who walked by on her way to dinner) put her face in my small field of vision and said, this is going to make your lungs hurt but that’s completely normal. I nodded…I could handle that. The pain in my lungs felt like they were too full or like I had a bad case of bronchitis. However, after that a pain more intense than I had ever felt before, moved to my head. Everything turned white; my brain felt like it was too big for my skull, about to blow up. I arched my back against the table and began screaming. I’m not sure if it was out loud or not. But they began telling me to breathe the oxygen, in and out, in and out…that it would get better soon (it didn’t). After the epinephrine shot, a bunch of things happened simultaneously: a nurse placed another IV in my other arm, (“just in case” I was told), they placed sensors on my chest to track my heart beats, another bag of medicine was started (not sure what that one was for), I received more ice packs, they told me my mom was coming to see me, and they called an ambulance to take me to the ER.

The thin film or "skin" covering my eyes was red and swollen from the allergic reaction.

I was seriously crying now, I don’t remembering being in this much pain, ever. I truly wished I could go unconscious so the pain would stop. My mom came over, or so they told me because my eyes were too swollen for me to see her, and held my hand. I started crying harder, this time out of relief. I was so thankful for the nurse that stayed above me, in my field of vision the whole time. She explained everything that was happening and tried to calm me down. When the ambulance guys got there, they moved me to the transit bed (I remembering being offended by the “oomph” that came out of one of their mouths, I wasn’t that heavy was I?). They strapped me down. I didn’t really care about any of this; all I noticed was any bump to my head and the consequent waves of pain. All the nurses made sure to say goodbye to me, my original nurse thanking me for pressing the button so quickly. I caught a glimpse of the nice man that had checked for metal before the MRI, looking extremely concerned. I was wheeled out through a waiting room in which all eyes were curiously looking at me. The ambulance ride wasn’t as interesting as I expected it to be. It’s not like what happens on TV where multiple people are in the back, getting supplies and administering medication (this could have also been because this wasn’t a very serious case). I asked weakly for pain medicine and he told me there was nothing he could do except give me more ice packs. My mom couldn’t ride in the back with me but rode shotgun. The ride consisted of him asking me for my information and a signature on his tablet. I’m sure this was for the large bill they were going to send me.

Me lying in the ER with an ice pack on my head. It ended up looking like I was wearing a pilgrim hat in my opinion.

At the ER I was expecting to feel relief from the panic welling up inside of me (my eyes had started to swell again and I didn’t think I could take another epinephrine injection). The young doctor informed me that I was doing fine, but they needed to watch me for at least 4 hours because the drug I was allergic to was still running through my veins. By the end of the visit I had been given 4 liters of fluid to flush it out of my system. However, the relief from panic, or the pain, was not provided. My pulse, having been 125 after the reaction at the MRI, was fluctuating between 90 and 130 during my panic attacks. In my mind, the IVs in my arms could now kill me. Anything they gave me, even anti-nausea medicine was a possible killer. They also had to give me medicine for the hives inside my intestines (who knew that happened?). After I was finally told I could go, after being given some migraine medicine that did absolutely nothing, I walked out…still panicking for some reason. At that point what finally calmed me down was talking to my boyfriend (affectionately referred to as Boy Casey) on Skype. Once I had called him outside of the hospital and hearing his extreme relief that I was alive and well (and promising to NEVER scare him like that again), I started to believe everything was okay.

After the panic subsided, the migraine did not. I was left with a horrible pain in my head and neck (different than the usual pain I had been in) for five days afterwards. However I refused to go back to the ER to have it treated upon the recommendation of my doctor because of the panic I knew would follow. However I can say now that I am doing better. I am on new nerve medication that has taken my daily pain down a notch. I am also pursuing a new, more conservative path that involves bite splints instead of surgery (thanks to a friend who recommended my new doctor upon seeing my last blog post). After hearing many recommendations and warnings of others, I decided to try everything I possibly could before undergoing a potentially risky surgery. I get the bite splints next week…hopefully they work! They are to be worn 24/7 so I don’t just reinjure the joint while eating or clenching my jaw. This relieves pressure on the joint, allows the disc to heal, and new scar tissue to form around the damaged condyle.

Why am I still in pain?

Let me just start off by saying I'm in pain. Not your everyday sort of pain like the kind you get from a hard workout or from hunching your shoulders all day in the computer lab. This pain cannot be stretched out. Or ignored. It's the type of pain that is there 7 days a week, 24 hours a day. The type of excruciating pain that wakes you up in the middle of the night and brings tears to your eyes. Honestly I have tears in my eyes while I'm writing this. My head is pounding like there is a sledgehammer being thrown back and forth against my skull, my neck feels like there's screws being tightened with a drill in it. My shoulders and back feel like I'm tearing the muscles whenever I move.

I'm not telling you all this to make you feel sorry for me. I just want to give you context of where I'm at right now. The real problem, though, is that my doctors at the Mayo Clinic flat out don't believe me. The pain clinic refuses to see me. My case has been "rejected" by them three times now. That is with doctor referrals from multiple experts in their field. That is with the diagnosis of CRPS (I will explain more about this later) a condition that is not only lifelong but not something that can go away with just positive thoughts. I have been shuffled from division to division and told to wait a couple days while my case is reviewed. Then I'm passed off to a new doctor. Each doctor has their own bias and own expertise. I get that. But isn't Mayo famous and known for their multidisciplinary care? Doctors from all sorts of backgrounds coming together to look at a tough case to give a proper diagnosis? And I say this is a tough case not because I believe I am special or unique. But because I've seen three different neurologists, 3 oral surgeons, 2 massage therapists, an acupuncturist, a physical therapist, a psychologist, a cognitive behavior therapist, and many family care doctors all in the past year. I have tried, according to multiple neurologists, everything they have ever prescribed for migraines to no avail. I've received two rounds of Botox injections for migraines, which also did not help at all. So either I've got a really tough case of chronic migraines, or something else is contributing to this. Most of you read my previous blog about my jaw infection and subsequent issues that followed. After all of that was "over" I started to get migraines (or head pain) every day. All day.

         And so, I am frustrated. So frustrated that I just want to give up. Not give up on life, I still have passion for living and making a difference. I mean giving up on trying to get my doctors to believe I have a real problem. Maybe I should just sit at home until I have surgery. Maybe I don’t want to be seen by doctors that clearly just think I’m a drug seeker. I feel like I’ve been written off by them. That there is a flag by my clinic number that says “**This one is crazy!!”. I keep getting my hopes up. I see a new doctor and tell them my issues and say that I have been given up on by other doctors when they realize I’m a tough case to diagnose. They assure me that they won’t give up on me. That they will work with me to find an answer to my pain. And then as soon as I walk out of the office, they won’t answer my follow up questions or even my phone calls. And then eventually they pass me off to someone else. I feel so silly and stupid for getting my hopes up each time. I want you to know that I do not “hate” the Mayo Clinic. I know doctors and nurses there that are genuinely great people that are doing things every day to help others.

I also want to make something clear. I'm not a drug addict. I'm not taking medication because I like the way it feels. I'm not searching for something to make me feel "high". I'm trying to get some relief from the pain I find myself constantly experiencing. Trust me, if I didn't have pain I would LOVE to be medication free and live a normal life. Who would chose to stay inside every day, never see friends, never do the things they love just to get some medication? Why would I be risking the side effects that many of these medications have? A couple of you this past year walked past me in the hallway completely asleep on a couch. This wasn't because I didn't get enough sleep, it was because I was on Topomax, a migraine preventative medicine that has a side effect of "extreme fatigue". I don't know if any of you have ever been afraid of what your body is doing. But that is what I've experienced in the past year. Am I going to react in a horrible way to the latest treatment? Will I be "hurt" beyond repair? 

To give you guys an update on my jaw…I have another serious surgery in my future. It is scheduled for the day after classes start in my last semester at graduate school. After seeing a couple of TMJ and nerve pain specialists that seem to really know their stuff, I have been given a couple new diagnoses. First, the discs in my jaw are herniated and out of place. The joint in your jaw is called a condile. This condile is covered by a disc that is supposed to sit on top of it and move when your jaw opens. Well my discs are on the side of my condile. So much so that they are digging into the nerves and cutting off blood supply to my muscle and tissue. Apparently this can happen quite easily if the growth plate in your jaw is damaged at a young age. My jaw has apparently stopped growing since around age 11 (they can pinpoint this exact age by comparing my growth plate to a normal growth plate in someone my age). So when I was 11 and decided to try snowboarding for the first time and face planted so hard in the ice that I got my first-ever bloody nose…they think I damaged my growth plate. So then when I had three surgeries in the span of three months to fix a bone infection, I traumatized my jaw and removed any padding that had been built up over my life.

Here is a picture of my after one of the nerve blocks was injected into the TMJ (the joint in my jaw) on the right side of my face. It made the whole right side of my face numb and relieved a lot of pain. This is a diagnostic tool to prove the pain is in the nerves, not inflammation in the brain like it would be if it was just migraines. I was able to raise one eyebrow for the first time in my life...but I was also unable to blink for two to three hours and had to tape my eyelid shut.

This leads to the second diagnosis, CRPS 1 (pronounced “crips”). This is short for Complex Regional Pain Syndrome. It is a pain syndrome that comes about after a series of traumas to the nerve. It causes the nerves to become inflamed throughout the body, making the sufferer experience much more pain that is thought to be “normal”. For example, when my mom touches my neck and I almost jump out of my skin from the pain, that is caused by CRPS (that’s what they think anyway). This is especially problematic because any further trauma to the area can cause more inflammation and a snowball effect into more and more pain. This means that if I get a root canal, I can hurt the rest of the nerves in my body. They explained that it would be like running on a broken ankle. This is a syndrome that is most likely life-long once it is developed. However it can go into remission if treated properly (IF you can receive treatment). But I want to be sure. I want a third diagnosis to see if this CRPS thing is actually what’s happening. Let me be clear, I don’t WANT to have CRPS. Sometimes I feel like doctors are looking at me like I want to have these conditions. But no, I would much rather have "normal" pain.

Finally, my spine is shifted. I have been complaining about severe pain behind my eyes. Apparently that can be caused by issues in the C1 vertebrae. Sure enough, when they took an MRI of my spine, the C1 was shifted to the left.

In order to begin treating these things and start healing, I will need surgery to remove the discs in my jaw. They are beyond repair at this point. This means they will have to replace the discs with fat that will shield my condile against more damage. They can put my jaw in a place where all my teeth fit, and the TMJ is no longer an issue. However after this surgery, I will need to wear a surgical splint that will be rubber banded into my jaw. The recovery from this surgery is about 9 months long. 6 months of that, my jaw will be closed shut with the rubber bands. But I’m hoping once the discs are removed, there will be much less pressure in my mouth and consequently less pain.

Here's a picture of me and one of my dogs. I am a huge believer in the healing power of animals. There is something about their innocence and unconditional love that helps one's outlook on life. 

I am determined to finish my last semester of graduate school during this process. I have been working with my professors and advisers at Duke they have been immensely helpful and understanding. As of right now, I think I can do it. It will be hard to communicate with my teeth closed shut and I’m sure I will be exhausted during a lot of the recovery. But I don’t want to put my life on hold anymore. I want to continue towards my career goals. I want to thank my friends and family that have supported me through this. Without people to talk over my frustrations and hearing their indignation on my behalf, I don’t know what I would do. So for that, I would like to express my sincere gratitude.

My mom and I on the plane to Florida to see a TMJ doctor. My mom has been here with me every step of the way and for that I am eternally grateful.