During junior high and high school, I had excessive fatigue and nausea. I also experienced frequent pressure headaches and abdominal pain. It was assumed that my symptoms were psychosomatic.
In April 2002, my ophthalmologist noticed papilledema. She ordered a brain MRI to be done. A Chiari Malformation with significant herniation of the cerebellar tonsils and medulla was noted.
In May, 2002, I saw Dr. Tadanori Tomita, neurosurgeon at Children’s Memorial Hospital in Chicago. He recommended a posterior fossa decompression. On 7/10/2002, he performed the surgery, which included a craniectomy and C-1 laminectomy.
Recovery went well and my symptoms all went away. I left for college in August 2002. Symptoms began returning at the end of August, 6 weeks after my decompression. I noticed headaches, nausea, and fatigue similar to before the operation.
In October, I had a follow-up MRI. It appeared to my doctors at Children’s that everything was still okay.
In November, I began having fainting spells. In December, I developed balance problems and drop attacks..
In December, I had a sleep study that showed Restless Leg syndrome and Periodic Limb Movement Disorder, responsible for frequent brief arousals. This was blamed on very low levels of ferritin. An alpha delta-pattern was also noted in the EEG.
An echocardiogram was done, which found a bicommissural aortic valve with fusion of the intercoronary commissure, causing aortic regurgitation. Mild pulmonary and tricuspid regurgitation were also noted.
In January, I began
requiring a wheelchair due to vertigo, lightheadedness, and drop attacks. I spent ten days in the hospital having tests
performed. I had a tilt table test done
on 1/16/2003. Findings included: marked
sinus tachycardia with upright position, with significant heart rate
variability. Baseline supine heart rate was 80 bpm
with frequent bursts of 138-140 bpm in baseline upright position. With the administration of Isuprel, supine
was 115 bpm and upright was 166 bpm. No significant hypotension was noted. Dysautonomia, specifically Postural
Orthostatic Tachycardia Syndrome was diagnosed.
In March 2003, I saw Dr. G, at the University of Toledo Medical Center, for treatment of POTS. He gave me several medications to try. Blood pressure improved mildly, but no other symptoms changed.
At this point, I had constant headache, dizziness, tremor, general aches and hypersensitivity, fatigue, nausea, decreased appetite, IBS, and continuing syncope. My weight was down from 120 to 95 pounds.
In October 2003, I had an appointment at The Chiari Institute in New York. I had Invasive Cervical Traction performed. They diagnosed me with a retroflexed odontoid, moderate scoliosis, and odontoid impression.
On December 29, 2003, I had a revision of the posterior fossa decompression and a cranio-cervical fusion to C-4. It was found that I have Ehlers Danlos Syndrome, contributing to cranial settling after the decompression, causing dysautonomia.
That surgery should have corrected the problem. However, most of my symptoms have only worsened since then.
In June 2008, I had a detethering of the spinal cord at The Chiari Institute, which was performed to stop the progression of occult tethered spinal cord syndrome. I also had Invasive Cervical Traction repeated, which determined that I still have cranial settling, thus I will benefit from a revision of the cranio-cervical fusion with further extraction. When my skull was lifted during traction, I experienced a relief of my constant headache, I was able to swallow normally, my heart rate and blood pressure stabilized, and the color returned to my face.
I was diagnosed, in mid-2008, with mild osteopenia. My endocrinologist diagnosed me with vitamin D deficiency causing secondary hyperparathyroidism. Treatment with Vitamin D and Calcium began. After 9 months of treatment, my vitamin D levels were checked again, and found to be toxic. However, my calcium levels weren’t improving. So in October 2009, I began treatment with Forteo to increase my bone density.
While waiting for the medicine to strengthen my bones, my condition has continued to deteriorate. I am bedbound 20-24 hours per day. I am in constant pain, which is often unbearable. I have blood pressure dysregulation and palpitations. I have frequent spells of reduced consciousness. I have debilitating fatigue. It is uncertain how long I will have to continue waiting in this state.
In the meantime, I have begun daily exercise, to help my bones strengthen. If you would like to follow my daily progress, please visit my blog at http://carolynschiari.blogspot.com.