In January 2021 I was rear ended by a hit-and-run driver. After the accident I felt like something was seriously seriously wrong. I couldn’t understand it and no one could explain it.

This was much different than the muscle and joint pains you would expect from a car accident. I honestly felt like I might be dying! The more I did, the more I had to rest to recover and the more my health was deteriorating. I started bruising after driving my car; my hands and feet would swell; my whole body and joints were burning pain; vision would go in and out of blurry. It was so confusing and frightening.

Pieces of the puzzle began to fall into place when an incredible physical therapist noticed I had the signs of Ehlors Danlos Syndrome. EDS is a rare collagen disorder and connective tissue disease, giving you lax joints and may have serious effects on other body systems like veins and arteries, your heart and other internal organs.

In my case when this shiftless driver slammed into my car, the joint laxity allowed the bones of my spine to move too much and actually puncture the dura mater, the dense connective tissue that holds in the fluid cushioning the brain and spine. My brain fluid began to leak out of my spine! This is called a Cerebrospinal Fluid leak.

CSF leaks are not well known or talked about in the medical community. It took over a year to find a doctor who had expertise in spinal CSF leaks. I was able to do this with my Personal Injury Protection from the hit-and-run. But almost as soon as I found this doctor the PIP was already exhausted from other therapies over the last year.

The trace of leaks was first detected with a spinal MRI. Now I need a myelogram which is a diagnostic test in which dye is injected into your CSF through a lumbar puncture. A CT scan of the spine is taken. The imaging and dye allows for more specific and detailed information about the leak… or in my case possibly multiple leaks.

Following the myelogram, blood patches, which are your own blood injected into your spine to literally patch the CSF leak, are the first course of treatment. Treatment can include multiple patches and require a recovery period of 2-4 months with my complications of EDS and injury.

It is so hard for me to explain how much this has effected my life. I have no life right now to speak of. Driving more than an hour makes me literally sick. I have constant headaches and must lay down most of the day, and have everyday for the last year and a half. I can’t sit or stand longer than an hour at a time without making my symptoms worse.

Your CSF fluid cushions your brain and helps protect it from injury. To be losing CSF fluid means your brain literally settles on the base of your skull and causes innumerable issues. My eyes have been effected possibly permanently by having the nerves stretched as my brain lowers out of its normal position. This condition has effected every part of my life.

The story in the opening video isn’t mine, but it could be the parallels are so similar. It is part of a series by the Spinal CSF Leak Foundation. Their YouTube channel and website gave me the tools to understand my symptoms and finally find experts who could help me!