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.
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| 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.
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| 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.
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| 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. |
