I've been sick all my life and knew something was terribly wrong with me. No doctors knew what was wrong or how to care for me. I was a medical guinea pig till my body couldn't tolerate the medicines any longer and I became allergic to just about every drug on the market. 

Things came to a painful clash inside my body in April of 2004 when I Had what the doctors thought was a subrachnoid hemerage. I now believe it was actually Spontaneous Intercranial Hypotension. While having numerous tests done to try to find where the bleed was, a 6-7mm brain herniation(Chiari Malformation) was seen on an mri, but the doctors didn't think it was related. And never told me. I didn't find out till years later! 

So I suffered for 3 more years, till 2007 and my chiropractor thought I had Chiari Malformation and ordered an brain mri. Where an 8-9mm brain herniation was found. So I got an appointment with The Chiari Institute in NY and for the first time in my life, I was properly diagnosed with a 10 mm brain herniation (Chiari malformation), cranio- cervical instability, cranial settling, tethered cord Syndrome, and Ehlers Danlos Syndrome. I was instructed that I should have my spinal cord de-tethered first, so I immediately had my spinal cord de-tethered and was scheduled to have the brain decompression and cervical fusion 1 month later. However, due to EDS I didnt do well post surgery, and couldn't return to have the brain decompression or cervical fusion surgery. 

In 2010, my tethered cord symptoms returned. And I went back to the Chiari Institute for a follow up. I was informed my cord was tethered again... through scar tissue, that 10% of EDS pts have to have a repeat de-tethering surgery because the cord reattaches to scar tissue. I opted out of a repeat cord surgery and the brain and cervical spine surgeries as well, for many reasons, and decided to wait. 

In 2015 things were progressively worse and so I went to MD and was seen by Dr. Fraser Henderson. He confirmed my spine was tethered again and we were going to decide which surgeries needed to be the main focus...brain decompression, cranio-cervical fusion or the repeat tethered cord. I have 2 daughters who also have the EDS and one that also has the Chairi so I decided to wait on the surgeries till they were older or until my symptoms were too debilitating and I would have no choice but to get the surgeries done. 

In 2019, I was ready to move forward but Dr. Henderson no longer took Medicare and I was forced to seek another Chiari/EDS neurosurgeon out of state. I went to see Dr. Jeffery Greenfield in MD and had a Burhole surgery to check my intercranial pressures. He wanted to rule out Intercranial hypertension or Spontaneous Intercranial hypotension. I did not due well post surgery and he said I probably wouldn't survive another surgery. I did not have intercranial hypertension but he was suspicious of intercranial hypotension(due to possible micro tears in my spinal canal), and due to him being a surgeon and not being able to help me any further, he advised me to go back home and find a neurologist who specializes in EDS and to learn to manage my symptoms. 

So back home I went but decided I would never see another surgeon again. I really believed my Heavenly Abba would heal me and decided to put my trust in Him to be my physician, and find a way to accept my reality whatever the end result would be.

So..it's been 2 yrs and I had another bad flare up this past January, that has been merciless and rapidly progressing. I had my PCP order repeat MRI's of the brain, cervical spine with flexion and extension, thoracic and lumbar, at an upright MRI facility in IN. He did and I had them all done this month on the 8th(April). I've found a Rheumatologist who specializes in EDS that I've seen twice since March 23. She has a colleague who specializes in Chiari and the cervial instibility, a neurosurgeon from Mayfield Spince Center in Cincinnati Ohio. I have an appointment May 20th. I'm waiting for him to review the images of my recent mri's, in hopes he will see me sooner. 

The results of my recent mri's is bitter sweet. I'm still herniated 10mm, the cranio-cervical instability is worse, I have multiple bone spurs and disc bulges throughout my whole spine that is either mildly or completely flattening my cord, I have foraminal narrowing/stenosis at different levels as well, only adding to the spinal cord compression. I also have Predominantly Modic type 2 endplate changes where my spine was de-tethered, my scoliosis was also noted, progressed degenerative disc disease throughout my whole spine and some other not so serious notations. I realize surgery is inevitable now, however I probably wouldn't survive. Im not able to take medicine for pain, and my nerves and brain are so starved for blood flow and CSF flow that I can barely stand it every time my symptoms increase, because I know the longer I go without getting the cord and nerve compression addressed, my nerves and brain cells are dieing and the damage that's been done is becoming permanent and irreversible! 

2 weeks ago, my symptoms rapidly worsened. Last week I had to miss my son's track meet and ended up at the ER(2nd time since Feb 8th). And today, 4/26/21, I had to use a walker (with a seat) for the first time in 2 years, just so I could attend my son's track meet. I can't walk very far before I have to sit down. This most recent flare up has caused secondary Dysautonomia symptoms that are so disabling. I can't stand, sit , or lie down in any position, without everything going numb and excruciating pressure/compression building up instantly in my head and extremities. I can't sleep or function day or night without this reality consuming my every moment. Only Adonia can save me, whatever that looks like. I will remain faithful to Him no matter what the end result is.

I Joined this website in hopes of connecting with other individuals who are walking a similar journey.