Christa’s treatments for CRPS -need to put disease in remisson!

Product Description

Charlotte, North Carolina, United States

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Christa is 19. She is a beautiful and kind young woman with an angelic vocal gift. She sings songs about God and about relationships. She uses music to calm her little sister and other children and to bring joy to her family and friends. She loves children and has earned her career certificate in early childhood development. All of this is in spite of a disease raging in Christa’s nervous system.

Christa has been dealing with Severe CAUSALGIA (severe burning pain in a limb caused by injury to a peripheral nerve) since May, 2016. This disorder is also called RSD and CRPS. Beyond burning, the pain is sharp, stabbing, excruciating, and ongoing. Her pain flares daily and is at a level of between 5-10 on the Wong-Baker pain scale, every day, throughout the day. Frequently in the evenings and late into the night, her pain increases to the point of agony – and the only way doctors can measure her level of pain is the McGill scale which indicates that her pain exceeds that of bone cancer. This is typical of causalgia, which is a diagnosis known by military veterans who have lost limbs or experienced trauma to the arms or hands, legs or feet. Christa’s nerve damage and pain may be the direct result of trauma sustained from a surgery.

Christa,19, is battling a disease called Causalgia (Reflexive Sympathetic Dystrophy), a progressively debilitating neurological disorde also known as CRPS: Complex Regional Pain Syndrome. She graduated high school in 2016, and had planned to begin classes at Texas A&M Corpus Christi in the fall of ’16. Unfortunately, her pain was too high to move forward with her plans. She is the second-to-oldest sibling of a family with six children and has a wonderful boyfriend who is very helpful and supportive of her.

Doctors believe Christa’s pain disorder was caused by nerve damage after a hand surgery. She was born with a venous malformation (cluster of veins that entangled) in her right thumb and forefinger, which spread to the palm by the time she was eight-years-old. The veins were swelling and turning her hand blue/purple while she slept, and this caused numbness and pain. This condition was identified in Christa in 2010, at the age of 11, by a radiologist. Since 2011, following multiple MRI’s and ultrasounds, the radiologist has performed sixteen sclerotherapy procedures (alcohol-based or bleomycin-based injections) on the veins of her right hand, palm, and fingers in order to spread the veins apart and allow better blood flow in her hand. None of these treatments ever caused long-term pain, but rather relieved the pressure in the veins.

Scar tissue developed inside the hand near the malformation causing her hand to become rigid, and in 2013, an orthopedic specialist performed a surgery on her palm to provide better mobility. Following recovery, Christa’s hand began curling inward and she could no longer grasp or hold things except her pinky and ring finger. Her thumb can now only handle 2 or 3 ounces of weight before giving out. Her pain from the surgery never really stopped. It would occasionally dull, but then become very sharp, stabbing, and burning.

Her last sclerotherapy procedures were in May, 2016 and later in December, 2017. During the year beginning May and through December, 2016, pain levels increased to the point where the radiologist told us that he was fairly certain she had RSD and referred us to two specialists.

After seeing a neurologist as well as two anesthesiologists (pain specialists), Christa has been definitively diagnosed with RSD/CRPS type 2 (resulting from an identifiable injury), stage 3 with causalgia- officially- as of December, 2016.

MEDICAL EXPENSES CLIMBED 1. We are hoping to raise some funds to help with the cost of copays.

Christa takes several prescriptions for her disorder and sees specialists several times per month. Co-pays in one month are usually about $375

TREATMENT PLAN IS SET

2. Treatment Plan

We are hoping to raise some funds to cover the expense of hospitalization.

Christa is eligible for a type of infusion therapy for her nerve pain called ketamine infusion. This drug is given on a low dose in the hospital during an inpatient stay. This treatment is costly. If insurance does not deny the claim, our best case scenario will be a $5,000 co-insurance bill. This type of treatment has been shown to give long-term pain relief to many CRPS patients. It is the closest thing we have to helping Christa’s pain go into remission.

Update

April 3-10, 2017, Christa received ketamine infusions via continuous PIC LINE IV in the intensive care unit of a hospital in North Carolina. She had almost completely reduced pain level by day 3. On day 7 she had chest pain. On day 8, he was discharged from the hospital. On the evening of day 8, she was rushed to the ER with severe chest pain. After 7 hours in emergency, and several tests, she was diagnosed with bilateral pulmonary embellisms. On day 9, April 11, she was re-admitted to a regular room for observation and was placed on blood thinners. She was discharged six days later. Since then, Christa has recovered from the embellisms, but endured over six months of pleuresy, the pain that happens around the lining of the lungs following PE’s. Her CRPS was in remission until December, 2017. Since then the pain has gradually reached a level higher than it had been before the first and only ketamine treatments she received. Her specialist has requested and was denied a pre-authorization from United Heathcare for the treatments.

We have appealed the decision but it was denied again, with the reason stating that there is no evidence that it would provide a benefit! We are perplexed to say the least, because the treatments a year ago resulted in nine months of Chrsta’s hand and right arm being almost pain free! Now, the CRPS has spread to up and across her shoulders and breast areas, rib cage, back and down both arms, as well as one leg. Her pain remains high as we continue making calls to figure out a way for her to get the relief she needs.

Please help us by 1) praying for Christa 2) sharing this fundraiser 3) donate if able.

THANK YOU!

Christa is not the only person suffering with this type of excrutiating pain. We want to make more people aware of RSD/CRPS so that more attention is given to research for preventing and curing this horrific and disfiguring condition.

Luke 6:10

10 [Jesus] looked around at them all, and then said to the man, “Stretch out your hand.” He did so, and his hand was completely restored.”

Thank you, friends, for taking the time to read Christa’s story and keeping her in your thoughts and prayers. Please share her story, please encourage your friends to help so that we can secure the treatments necessary to hopefully stop the pain and put the causalgia into remission. God Bless You.

Lois Coletti

7 years ago

$50

anon. 2/2018

7 years ago

– Offline donation

$300

Ellen L. July 2017

7 years ago

– Offline donation

$800

LOIS COLETTI

7 years ago

$50

amy romero

7 years ago

$100

Lavon Odom

8 years ago

$100

DAVID NIXON

8 years ago

$60

Paige Gore

8 years ago

$25

Doris Zeman

8 years ago

$50

Mary Watson

8 years ago

$25

Lyndsey Vincent

8 years ago

$10

LOIS COLETTI

8 years ago

$50

Cathy McMonagle

8 years ago

$50

Josephine Ludwig

8 years ago

$50

Stacey Blake

8 years ago

$20

Robert Douglass

8 years ago

$100

Lindsey Cousino

8 years ago

$26

Michele Ballein

8 years ago

$25

LOIS COLETTI

8 years ago

$50

Anonymous

8 years ago

$500

Doris Zeman

Praying for a cure and comfort for Christa.

8 years ago

Cathy McMonagle

Always in my prayers.

8 years ago

Shiela Johnston

To all that have contributed to Christa’s medical expenses, THANK YOU. It has been an emotional week as we had some setbacks with medications and appointments not going as well as needed. Receiving the encouraging prayers, words of support, and gifts has been overwhelming and deeply appreciated. Some of the messages we have gotten from friends at a distance have been truly beautiful and heartfelt. The notes help Christa know that she is not alone. Thank you and we love you! Shiela, Darell, Christa, and family

To all that have contributed to Christa’s medical expenses, THANK YOU. It has been an emotional week as we had some setbacks with medications and appointments not going as well as needed. Receiving the encouraging prayers, words of support, and gifts has been overwhelming and deeply appreciated. Some of the messages we have gotten from friends at a distance have been truly beautiful and heartfelt. The notes help Christa know that she is not alone. Thank you and we love you! Shiela, Darell, Christa, and family

8 years ago

Sandra Kirkpatrick

I’ll continue to pray for Christa and the Johnston family.

8 years ago

Melisa Harrison

Keeping Christa in my prayers!

8 years ago

Mary Wrubel Watson

$0

Shiela Johnston

Mary Wrubel Watson