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.