While the diagnosis isn't terminal, it is serious and with considerable risk. Rather than curl up in a ball and cry all day, I'm challenging life and savoring all it has to offer. I'm loving deeper than I ever have, I see colors richer, the world feels more intense. I try to give my time more freely to those I care about because I realize my time is a precious gift.
Today the color green has captivated me. The different shades on trees is mesmerizing even as I drive down the highway or sit waiting in a parking lot. On just one tree, there are numerous shades of one color of green. It's amazing.
Yesterday I stood at the beach. I watched the pelicans float lazily in the sky. I felt the breeze against my face as the waves roared and crashed into the sandy beach. The sandpipers scurried across the sand looking for their lunch.
I study my children's faces and memorize every minute detail. I watch the way they move and run. I savor their laughter and enjoy their antics throughout the day.
I'm also challenging life again. I more active by walking with friends regularly. I volunteer when time allows. I follow through with doctors appointments and physical therapy. I find time to climb rock walls, go zip lining, and go on other adrenaline raising adventures.
I was diagnosed with Chiari months ago and while that diagnosis didn't settle well, I was prepared for it given the boys surgeries and everything we've gone through with them. I was not prepared to hear that I have IIH in addition to Chiari.
IIH is idiopathic ibtercranial hypertension. It was known as psuedotumor cerebri, meaning false brain tumor. I think I read 1:100,000 people are diagnosed with IIH and to have both is even less common. I am a zebra in the medical world.
My dura is thin and there is pooling of my cerebrospinal fluid. I'm at risk of going blind and developing hydrocephalus, thus requiring a shunt. My dura could break on its own and cause a spontaneous leak of cerebrospinal fluid. This puts me at risk for developing bacterial meningitis which carries its own risk factors.
There are few treatment options for either IIH or Chiari. IIH can be treated with spinal taps and medication. Medication hasn't been recommended for me at this point because they don't know what my pressure is and a spinal tap could make my Chiari worse, meaning it could cause permanent damage.
Decompression surgery has been recommended where the cerebral tonsil (16 mm herniation) and top vertebral would be removed. A greater space would be created by opening my dura and putting a patch made of my own skin in its place.
The outcome of surgery can be anywhere from a typical good outcome to fatality. I'm at higher risk for a leak which puts me at higher risk for bacterial meningitis. I'm also at high risk for blindness. I can either take the chance at feeling better after surgey or continue down this path of chronic pain which also means I'm still at risk for a leak, hydrocephalus, and blindness. Then there's the risk of fatality.
It's quite the precarious situation It wasn't easy to hear the neurosurgery say, "Jessica, you're an interesting case and in the neuro world, that's never a good thing to hear." "Shall we dive right in since you're already familiar with Chiari?" I gulped, bit my lip so I didn't cry, and listened as he explained the above to me. Time has passed and I'm still digesting the information some days. Most days I'm at peace because I can't change what is happening. Other days I'm angry at the world and perhaps one day a month, I want to cry and feel the hot tears fall on my shirt because it proves I am still alive. And then I get up and find a new adventure before I have to face a risky surgery.
