In 2008, I was diagnosed with Ehlers Danlos Syndrome (EDS), hypermobile type. EDS is genetic connective tissue order that causes defects in the collagen or glue that holds our body, especially joints together. My glue doesn't work right, so my ligaments are like taffy, and they're stretchy, but don't go back into place. I have had several orthopedic surgeries to stabilize different joints throughout my life. There is no cure for EDS and symptoms are treated as they arise.
Fast forward a couple of years later! While riding as a passenger in a car in April of 2010, I turned my head to the right to look out the window, and felt an excruciating pop at the top of my neck, at the base of my skull. In the days to follow, I began to experience excruciating occipital headaches, neck pain and muscle spasms, shoulder pain and numbness, dizziness, anxiety, cognitive issues like brain fog and memory issues, extreme fatigue, sleep issues, leg weakness and numbness, and nausea. My intracranial pressure began to increase, making my head feel as though it was going to explode. Shortly thereafter, I began to drip cerebrospinal fluid from my nostrils and knew something was seriously wrong. I then started a very long, frustrating road to figure out the root cause of these troubling, and soon to be debilitating symptoms.
Sparing the boring details of misdiagnosis after misdiagnosis, I finally found a physician who was experienced in treating EDS patients. After one visit with him, I learned that I was being referred to one of the few neurosurgical specialists experienced in treating Chiari patients in the EDS patient population, Dr. Fraser Henderson, in Washington, DC. After seeing 3 different neurosurgeons & ENT's at Stanford and UCSF and getting nowhere, I knew Dr. Henderson was my last and only hope at getting a portion of my health back. I've exhausted all savings and retirement accounts to pay out of pocket for the travel, required testing, imaging studies and consultations that are not covered by my insurance company and are out of network. Finally, after a 4+ year long debacle, I not only learned what is wrong with me (errr...my head atleast), but I also learned what could be done to improve things to gain some quality of life back!
Through the multiple MRI and CAT Scans, Dr. Henderson was able to determine that I have the following:
My head is wobbly on my spine. Being upright can be extremely difficult b/c brain structures and skull bones slide and sag upon upright posture. Due to the weakness of my ligaments, I also have cranial settling, where my skull sinks down onto the odontoid bone of my c-2 vertebrae, causing it to poke into my brainstem. As my skull shifts, my brain and spinal cord are being compressed. Severe neurological and vascular deficits occur as a result.
Chiari (kee-AR-ee) Malformation
The lower part of my brain is herniating through the opening at the base of my skull and compressing my brainstem. This is causing obstruction of the cerebrospinal fluid (CSF). This results in severe head pressure, neck pain, difficulty swallowing, headaches; changes in vision, breathing pattern, balance, coordination, strength and sensation. THERE IS NO CURE! Surgery is the only treatment to re-establish normal CSF flow and stop the progression of neurological damage. Due to ongoing CSF flow obstruction, I have developed Intracranial Hypertension which can be very dangerous.
Postural Orthostatic Tachycardia Syndrome (POTS)
Due to the brainstem compression, my central nervous system is malfunctioning when I stand or change head position. It causes my heart to race, severe fatigue and other debilitating symptoms.
Tethered Cord Syndrome (TCS)
The lower part of my spinal cord has formed attachments which are limiting the movement of my spinal cord. This causes a downward tugging & stretching of my spinal cord and causes many neurological issues in the lower part of my body. Surgery to "detether" the cord is needed to stop neurological damage and will be done as my second surgery.
As a single mother and sole financial provider for my two daughter's, my livelihood and that of my children, depend on this surgery. If I do not have this surgery, I will eventually lose mobility and the ability to walk. Severe injury to my spinal cord is imminent and would result in paralysis, possibly death.
It is critical that I have this surgery as soon as possible and before greater neurological damage takes place. I need to continue working, both mentally, as well as financially for my girls! I've got to give the neurosurgeon a $10,000 deposit in order to proceed with surgery on 9/30/14. This is where I need your help! I've exhausted my personal savings and retirment accounts getting this far! As insurance will cover a portion of my hospital charges only, I'm looking at easily $50,000 to cover the neurosurgeons charges for the two surgeries I require. Your donations will help this mother get her life back!
I sincerely appreciate the support and prayers you've all sent over the years and am so relieved to finally see the finish line!
- Kasper Ducey
- Anne LaCroix
- Brian, Andrea &Sage Rossman
- Audrey Lum
- Lara Olsha
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