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Battle With the Beast

My mom suffers from Chronic Regional Pain Syndrome – a chronic systemic, disabling disease characterized by severe pain in in parts or all of the body.

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Battle With the Beast

Battle With the Beast

Battle With the Beast

Battle With the Beast

Battle With the Beast

My mom suffers from Chronic Regional Pain Syndrome – a chronic systemic, disabling disease characterized by severe pain in in parts or all of the body.

My mom suffers from Chronic Regional Pain Syndrome – a chronic systemic, disabling disease characterized by severe pain in in parts or all of the body.

My mom suffers from Chronic Regional Pain Syndrome – a chronic systemic, disabling disease characterized by severe pain in in parts or all of the body.

My mom suffers from Chronic Regional Pain Syndrome – a chronic systemic, disabling disease characterized by severe pain in in parts or all of the body.

Taylor Amarel
Taylor Amarel
Taylor Amarel
Taylor Amarel
1 Campaign |
Grass Valley, United States
$6,900 USD 68 backers
21% of $32,000 Flexible Goal Flexible Goal
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I grew up with a beast.  It’s not my beast.  It’s my mother’s.  But I grew up with it.   The beast is called Complex Regional Pain Syndrome (CRPS).  When I was 3 and my world revolved around naptime and Blue Clues, the beast invaded my mother’s legs.  The beast came and took my beautiful vivacious hands-on-go-get’em mother and replaced her smile with tears of pain.  There were no more walks to the park or secret forts in the living room because my mom lost her ability to walk and spent her days curled up in a ball of pain.  I grew up watching my mother wither away as her body was ravaged by unrelenting pain.

Then the doctor visits started.  One by one, doctor after doctor, giving a diagnosis and a treatment that only made my mom more ill.  Day by day my mom got sicker and sicker.  Finally, we found a doctor who understood the CRPS beast and a new treatment plan began.  Slowly and carefully, my mom began to heal.  As I grew stronger, so did my mom.  Gradually, she began to rejoin my childhood and the beast was replaced with my mom.  But the promise of a life without the beast was not to be.  Once a year or so, my mom would flare and the beast would raise it’s ugly head.  One day she would be ruling the world and the next day she was unable to walk and writhing in pain.  Mom describes CRPS pain as if someone is taking a blow torch to your body, digging it into your skin.  Fortunately, mom’s doctor developed a special medicine and procedure that gave my mom back her life.  About every 18 months, mom’s doctor would inject Botox mixed with special medicine into her lower lumbar sympathetic nerve bundle.  Unfortunately, the all-knowing insurance companies refused to pay for her treatment.  Sure, if she wanted Botox injected around her eyes to erase wrinkles they’d pay, but to eradicate the beast, to kill the pain? No, they won’t pay.  So, as a family, we made sacrifices, tightened our belts so we could pay to keep the beast away.  Over the course of ten years, we have spent on average $15,000 per year on out-of-pocket expenses.  That’s $150,000! But we didn't give up.  While I worked to graduate from high school, mom was able to earn her teaching credential. For the past four years, she has been an amazing high school math teacher, beloved by many students.  Sadly, two months ago, the beast came back and this time we need help.

In January 2013, a simple root canal caused the CRPS to spread to her face and the previously successful nerve blocks are no longer effective. Doctors have offered mom three options.  The first option is a spinal cord stimulator implant. This implant blocks pain messages from the brain.  The stimulator involves an implanted battery which will need future surgeries to replace.  The out of pocket costs for the stimulator are estimated to be around $35,000.  The second option is to do nothing and let the CRPS continue to spread; with this option, it will only be a matter of time before the CRPS takes over my mom’s entire body with permanent crippling. The third option offers the best hope, Ketamine infusion treatments.  

The good news:  Ketamine has been shown to be very effective in fighting CRPS.    

The bad news:  The insurance company is refusing to pay for these much needed ketamine treatments. Ketamine costs $2,000 per day.  The doctors predict she will need between 5-7 days of Ketamine treatments 3-4 times per year.  Do the math.  That’s up to $56,000 per year! Furthermore, in order to stop the CRPS from spreading, my mother just incurred an initial $15,000 debt in order to get an immediate emergency ketamine treatment that must be followed by additional treatment to assure CRPS remission.

Ketamine treatments are the reason I reach out to you.  Please help us eradicate the beast.  Please help me get my mom back, for me, for my family, and for her students. 

What is RSD also known as CRPS?

Imagine the slightest breeze causing excruciating pain.  Imagine the gentlest touch causing terrible pain.  Imagine not being able to sleep because the sheets are like knives against your skin.  Imagine severe pain that burns deep and haunts your every breath.  This is Complex Regional Pain Syndrom(CRPS) also know as Reflex Sympathetic  Dystrophy (RSD).  The simplest description of CRP/ RSD is that it is a disruption in the healing process.  A more scientific explanation is the CRPS is a chronic neurological syndrome characterized by:

  • severe burning pain Pain Scale

  • pathological changes in bone and skin

  • excessive sweating

  • tissue swelling

  • extreme sensitivity to touch

Typical symptoms of the disease are changes in the color and temperature of the skin, intense burning pain, swelling, skin sensitivity and muscle degeneration.  

What Causes CRPS/RSD?

Doctors aren’t really sure what causes CRPS/RSD.  Many theories involve the sympathetic nervous system and the immune system.  Other theories maintain that there is no single cause of CRPS/RSD.  Some people get RSD after a surgery or an injury.  

My Mom’s Job

As of Feburary 2013, my mom currently can not work.  She has used up all of her sick leave from her employer. The remainder of my mother's contracted 2012-2013 salary will pay for a substitute teacher in the classroom. If my mother can get successful treatment she can return to her high school teaching position.

Where will the donations go?

1.) The money will first go to pay for Dr. Prager and the Center for Amnulator Surgical Treatment, UCLA Medical Center Los Angeles California. 1090 Glendon Ave. 90024 for the emergency treatment.

2.) Medications and prescriptions required.

3.) The money will first go to pay for Dr. Prager and the Center for Amnulator Surgical Treatment, UCLA Medical Center Los Angeles California. 1090 Glendon Ave. 90024 for follow up treatments.

4.) If funds should exceed actual costs, the excess will be split between the National RSD/CRPS Research Center and other RSD/CRPS patents who are having financial difficulty identified by the Dr. Prager and the CAST ( Center for Amnulator Surgical Treatment ) facility.

Other ways you can help?

If you can't contribute donations that doesn't mean you can't help. Sharing this page, telling your friends, and raising awareness will go a long way to ensuring our campaign is successful and my mother gets the treatment she needs. 

Medical Center

Center for Ambulatory Services

UCLA Medical Center

Dr. Joshua Prager, California Pain Management Center

Contact Us


Taylor Amarel - tsa256@gmail.com

Toni Amarel - toni.lee.amarel@gmail.com

Donna Soldano ( Grandmother )- dsoldano@att.net

Phone: 530-273-1942

 

 

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