Support My Battle with Cauda Equina Syndrome

Hi everyone - on Tues April 15th of this year, I was diagnosed with Cauda Equina Syndrome (or CES), a rare but very serious condition that, if not treated at symptom onset (within 48 hours), your percentage of the symptoms being permanent is drastically increased.

For those that don’t know (I didn’t!!) your Cauda Equina is the ending of your spinal chord. You spinal cord ends at L1/L2, and then your Cauda Equina takes over, looking very much like a horse’s tail. What is actually in that “horse’s tail” are thousands of nerves that control your bladder, bowel and legs.

As you can imagine, this affects a person’s bowel, urine, and sex life. Most importantly, it can affect your legs, and feet in their entirety. For me personally, the pain went from my L4 vertebrae down both legs, causing sharp pain mostly down the front of my thighs, and some numbness to the toes. I unfortunately also have what is called Saddle Numbness and complete loss of control of my bladder as well as use of my right leg.

Upon arrival at the hospital here on Long Island, I was immediately taken back where I had two MRIs, a CT scan, and an x-ray. After all those tests it was concluded that I do in fact have CES and would need surgery as soon as possible so as not to damage anything permanently. Just a few hours later, I was wheeled into surgery when instead of taking 1.5- two hours, it lasted EIGHT. I woke up in recovery and my journey truly begins. Today, eleven days later, I await to be transported to the rehab care facility and begin intense PT, OT, as well as other basic life functions. I expect to remain in rehab for around three tonfour weeks.

I am here today before you to humbly ask for help with this uphill battle. I work full time as an auto claims adjuster, while being a single mom to three older teenage boys. I thought I had done the “right thing” by signing up for the best packages when benefits time came. I selected the choicest packages that would protect me and my family the most should something ever happen. I got all the paperwork filled out and submitted for Short Term Disability. Come to find out, in New York State, the maximum you can get for STD benefits is $170 a week. While just few miles away in NJ, the max payment is $1025 a week, and in California it is $1620 per week. New York is the lowest paying disability state, due to the law that was passed in 1989 stating the benefit will not be changed due to inflammation or the average weekly wage.’

I am not as confident as I was a week ago, in this journey due to the fact

that I will be receiving significantly less disability than expected, not even enough cover rent alone. I know times are tough for many but I had to give it a shot - even a share or a like would be a major help