While in Kuwait for three years, my symptoms increased, worsened and I began to be diagnosed. I did not have a pinched nerve after all, but rather perineural cysts in my sacrum. These “cysts” are actually spinal cord nerve root aneurysms which are filled with Cerebral Spinal Fluid and cannot be removed without possibly damaging the hair-thin nerve which each one encompasses.
As my pain and other symptoms worsened, I had MRIs every 6 months to a year which showed more and more of these aneurysms. I found a doctor who could perform a procedure to drain and wrap them, but Tricare would not allow it. After moving to Miami, Tricare sent me for what was probably my 10th opinion - the Chief of Neurosurgery at the University of Miami. He suspected there was a deeper cause of these cysts and sent me to Human Genetics where I was tested, assessed, and diagnosed with a connective tissue disease Ehlers-Danlos (EDS) which I learned through many phone calls to relatives, runs in our family.
Because of this condition, it made any surgery especially difficult, specifically spinal cord surgery. At the time, we only knew of a large cluster of these cysts in my sacrum, but we would soon learn there are clusters of them bilaterally from my sacrum to my brain. According to my new doctor, I have more of these aneurysyms than any person in the world he has ever seen or heard of.
The pain is debilitating and the nerve pain and symptoms are life-altering. There are constant headaches, my spine feels like it will explode out of my body, I have numbness, tingling, shooting, stabbing, burning pain from the waist down, as well as bowel and bladder issues, and numbness and tingling in my arms with loss of reflexes in my limbs, lack of a gag reflex which causes me to choke, and difficulty with coordination and cognition.
Through my research, I found my new neurosurgeon in Silver Spring, MD who only treats patients with my specific genetic condition and spinal cord disease. He is out of network with all insurances - which requires me to pay cash or use Tricare standard which is essentially an 80/20 insurance plan. After a 6-month wait to obtain an appointment, I paid cash to see him and he immediately knew there were yet other deeper causes of my symptoms.
In addition to what we already knew, (the cysts/aneurysms themselves are a symptom of not only the too-stretchy spinal cord covering caused by the Ehlers-Danlos (EDS)), but also intracranial hypertension, causing my spinal fluid to force outward into these innumerable aneurysms. Many of my other symptoms are a result of congenital diseases - spina bifida occulta and a tethered cord.
As I was previously told by other neurosurgeons: the cysts were the only problem they wanted to treat, they were too afraid to touch me, or that they didn’t know what was wrong with me at all - I’m sure you can understand why I want my life to be in the hands of the man who specializes in this, invents the instruments and devices for these surgeries, who writes the textbook chapters on neurosurgery, and who believes he can, at the very least, stop the damage from progressing in my brain and spinal cord.
I am raising money to cover my portion of both surgeries, required tests, hospital stays, etc. The reason the goal is so high is because this is one of the specialities which my insurance allows the charge to exceed their allowable amount and I am responsibe for that entire additional fee. I am responsible for all charges, regardless of my catastrophic cap, and the hospital where he operates also does not accept Tricare for payment in full. I am responsible for the doctor and hospital fees. Please help me get the care I desperately need from the most qualified and knowledgeable expert in the specific diseases I have and the neurosurgery I require. Every little bit helps. Thank you and God bless you all.
If it turns out that any of my bill becomes waived or forgiven, any unused funds we raise will be used to help someone else struggling to get help from Dr. Henderson.
- Paula Martin
- Larry Rothstein
- Kevin & Barbara Gallegly
- Lisa Custer
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