Alternate titles for this post include: “Where I’ve been for the last four months” and “Why I never accepted any ice bucket challenge nominations.” (That gives you an idea of just how long this has been going on.) I normally consider myself a bit of a Facebook-oversharer, but that hasn’t been the case over these last four months. Although I suppose I could regain that title after sharing this very post.
After suffering through several unusual symptoms, seeing numerous specialists and having endless tests, I have yet to receive a definitive diagnosis. I’ve had severe pain in my upper back/neck/shoulders/arms, numbness in my extremities, shortness of breath and substantial weight loss, despite having a very healthy appetite. I had to switch my primary care provider after not being taken seriously by my first one, and thankfully now I have a wonderful doctor who is treating me with great care and concern, although there’s only so much a primary care doctor can do. I have seen a pulmonologist, cardiologist, gastroenterologist, an endocrinologist, a neurologist, two neurosurgeons and have future appointments with an additional specialized neurosurgeon, an orthopedic spine doctor, a pain specialist and a rheumatologist. I’ve been to the ER twice, had two CT scans on my lungs, a spinal x-ray, an abdominal ultrasound, a pelvic ultrasound, a cardiac stress test, two EKG’s, two breathing tests, a HIDA scan on my gallbladder, an endoscopy and an MRI on my spine, an MRI on my brain and a third one for my spine will be scheduled soon. My blood has been drawn enough to feed a family of vampires, testing my thyroid (numerous times), valley fever (twice), TB, RA, lupus, several CBC’s, a CRP, lyme disease, Celiac’s disease, pituitary function, numerous more I’m forgetting…all normal.
While my doctor feels those results should rule out anything “scary” like cancer, it’s difficult to feel any sense of reassurance when I continue to feel pain each day. The one finding that has come from these numerous tests is that I have a thin syrinx in my cervical spine, which is the term for a spinal cyst. I was told for weeks that the syrinx is too thin to be causing my symptoms, but then recently I was told that my pain is the textbook description for syringomyelia (the condition of having a syrinx.) I’ve spent hours upon hours Googling this condition and I can tell you with little doubt that it’s the exact kind of pain I’m experiencing. It was also recently discovered that I have scoliosis, which is associated with syringomyelia. Doctors insist that I must have always had the scoliosis but we never noticed it until now. However, Justin, my mom and I all feel like it’s something we would have definitely noticed since the right side of my back is raised so much higher than my left when I bend over. Because of this, I was going to physical therapy two times per week, but it has done little to help my pain. It’s extremely frustrating that doctors act as if the syrinx is just an incidental finding, and therefore nothing to be concerned about. One quick Google search for “syrinx” or “syringomyelia” will tell you that there’s nothing incidental about it.
I even traveled to Mayo Clinic to meet with one of their doctors, but he was of no help to me. After making the appointment, gathering all my medical records and tests, and making the two-hour trip to Scottsdale, I couldn’t have been more disappointed to have a supposed “top-of-the-line” doctor tell me the pain is in my head. On one hand I cannot blame him for jumping to that conclusion when he reads through my paperwork and sees that I just had a baby 8 months ago and also recently lost my alcoholic father. I’m sure my breakdown right there in his office just further confirmed his diagnosis. My breakdown, however, was due to the fact that I’ve been through the scariest experience of my life over the past several months, feeling absolutely helpless dealing with our challenging healthcare system, and spending each day worried that I’m not going to be around for my baby boy. I could tell immediately that this doctor had me pegged before I even opened my mouth, and all I could think was, “You’re not going to help me, are you?”
There is no way I can cram into one blog post what I’ve been through over the past four months. I’ve spent each day in miserable pain, desperate for an answer. These many tests and specialists have not been easy to come by. Once my doctor provides me with a referral, I usually call 4-5 different doctors in each specialty and make numerous appointments before I can find one who can get me in without having to wait several months. My intention in sharing this is not to have people feel sorry for me, but rather just to “get it all out there” so I can stop feeling like I’m harboring a big secret while I’m mostly holed up at home.
We have been extremely fortunate to have my mom here in town over these last few months helping with Owen as well as with anything and everything else so I can try to take care of myself and attend these numerous appointments. I am also very blessed to have an incredibly loving and endlessly supportive husband who has been by my side through all of this and has even taken time away from work to attend appointments with me. If there is one positive to come from this awful experience, it’s that I never want to take anything for granted ever again, especially good health. I now have so much empathy for people who suffer with chronic pain. You feel like you have to convince everyone that what you’re going through is real since you look fine on the outside, or just do your best to hide your suffering and pretend like everything is okay. It’s a miserable way to live life, and yet it also provides one with a clarity and perspective that can only be found in times of suffering.
I have yet to catch a glimpse of that light at the end of the tunnel, but one thing is for sure I am not willing to give up. I have a beautiful baby boy who deserves a healthy, happy mama. So far I’ve been told that pain management is my only option, and nerve pain is one of the hardest kinds of pain to treat. After being prescribed numerous medications and discovering that they offer little to no relief, I am just not willing to accept that as the final answer at this point. Although I am beyond sick of attending appointments and frustrated that this has become my full-time job, what else can I do when I’m living in continual pain?
According to what I’ve read online, syringomyelia occurs in only 8 out of every 100,000 people, so as you can imagine it’s very difficult to find a doctor who specializes in this condition. Fortunately, Phoenix has the Barrow Institute which is a world-renowned neurological center. I have an appointment scheduled with one of their neurosurgeons who specializes in syringomyelia. I’ve been told by two other neurosurgeons that my syrinx is inoperable because it’s too thin, but there is a possibility it may have expanded since my last MRI as I’m experiencing increasing pain and stiffness. As much as I don't want it to expand for fear that my pain will turn to paralysis, I also don't want to just accept that I have no choice but to live in pain.
The syrinx doesn’t necessarily explain my shortness of breath, although the doctor thinks my breathing is somehow restricted due to the pain, and it certainly doesn’t explain why I’ve lost so much weight. Therefore, despite having one diagnosis that doctors can’t seem to agree on, I still feel like I’m living in the limbo of a medical mystery. Prayers are much appreciated, and please…never take your health for granted!
Romans 8:18 For I consider that the sufferings of this present time are not worth comparing with the glory that is to be revealed to us.
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