Rally for Heidi & Gabe!




Hello! First I'd like to thank all of you for your love and support. So many of you have been incredibly thoughtful and caring, just as when my mom was dying. For that I am so grateful.

For years I have suffered from chronic pain, primarily in my back, and neurological symptoms. Over time my sign/symptoms have gotten worse - Im experiencing severe pain in my neck and lower back that radiates down my left leg, left arm and the left side of my face, terrible headaches, numbness and tingling in my hands and feet, muscle spasms and twitching, muscle weakness, and bladder problems. For years I went to many doctors and neurologists trying to figure out why I was struggling so much. Ive had countless xrays, CT scans, MRIs of my brain, ECGs, etc. My doctors and I assumed that my back problems were a result of the role over car accident I was in 10 years ago, in which I broke my pelvis in 8 places, but we had no answers to why I had the neurological symptoms I've been experiencing.

Finally, recently, although it should have been done years ago, a doctor ordered an MRI of my cervical spine. After he saw the results, he immediately referred me to a neurosurgeon. I was diagnosed with a syringomyelia in my cervical spine, discs that are protruding into my spinal cord, visual cerebral spinal fluid, annular tearing and scoliosis. I also have degeneration at all levels, but that is very common with age. My problems are altering the pressure between my brain and spine, causing the neurological symptoms. I decided to see more doctors for second and third opinions, and they all gave the same diagnosis, then referred me to neurosurgery. I have been deemed as "temporarily and totally disabled" by more than one specialist.

Last week I was in the hospital overnight because I was having excruciating pain in my lower back and in my leg with urinary incontinence. They had to keep me for observation because I was having significant and worrisome neurologic issues. While I was there, they did 2 more MRIs and found that I have the same issues in my lumbar spine as my neck.

I am currently working with the neurosurgeons at the University of Colorado Hospital. It is the same team of doctors that cared for my mom through her brain cancer and performed her brain surgeries. Syringomyelia is a rare condition that they believe is a complication of the bacterial meningitis I had while I was pregnant with my son, Gabe. Currently I am doing physical rehabilitation, im on oral steroids and receiving epidural steroid injections, but the only thing that truly helps is surgery. The surgery can actually take years to recover from, but if I don't have neurosurgery, I will continue to get worse. After the surgery, I will need to continue the rehab and injections.

Unfortunately, my insurance isn't being very helpful and I'm having to pay for most of my treatment. Also, because I'm disabled and taking narcotic pain medication, I'm unable to work through my recovery. It has been incredibly frustrating and discouraging, but it IS nice to finally have a diagnosis and direction.

I'm honestly incredibly embarrassed to create this page, but I could really use financial support for my treatment and medical bills, for it is all very expensive. Truly, any amount would help - it all adds up! If youre unable to contribute financially, positive vibes and prayers help, too! Thank you all for your kindness and consideration.

For those interested, you can follow this link or do an online search to learn more - 
http://www.ninds.nih.gov/disorders/syringomyelia/detail_syringomyelia.htm

Much love,

Heidi

Donations

  • John Klingner 
    • $100 
    • 33 mos
  • Bobby Prater 
    • $50 
    • 33 mos
  • Kevin Otte 
    • $50 
    • 34 mos
  • Sam Althouse 
    • $200 
    • 34 mos
  • Stephen Michael  
    • $100 
    • 34 mos
See all

Organizer

Heidi Janenan 
Organizer
Littleton, CO
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