Burning for a Cure, The Fire Inside

This is not a story about a fire in the traditional sense. This is a story about pain. A kind of pain that those of us that have not had will have a very hard time understanding as you cannot see pain, you can only feel it yourself. Imagine filling a bucket with ice and just enough water to give you room to put your hand into it. Hold your hand still, the cold changes from just cold to an intense burning feeling. You want to pull your hand out...but leave it. It becomes unbearable eventually and you yank your hand free of the cause of your pain. That pain is as close as we can come to experiencing the pain of CRPS...the pain Jessica has had every day since her injury. CRPS, or chronic regional pain syndrome, is ranked at the most painful condition known to medicine. It has no cure. No conventional medicine dampens its misery...opioids do not even help. Physical therapy to maintain mobility of the affected body parts so they don't lock up can be so excruciating that the patient passes out doing something as simple as making a fist. Here is Jessica's story. The Backstory  Jessica is a talented licensed veterinary technician that has been working in the field for years. I had the good fortune to meet and work with her several years ago. She has worked in emergency medicine, surgery specialty practices, and general practice.   Her compassion for the animals she cares for is matched only by her talent and experience as a veterinary nurse.  What Happened  Jessica was working with the Jacksonville Zoo when she was injured. One of the (many) things she was involved in while there, was to help set up their manatee rescue program. One day, after a cold spell, 15 manatees were being checked and cared for.  The entire team was exhausted....these are really big wild animals that are frightened and confused, and more comfortable in water than on land. One of the last ones, a big adult, panicked and thrashed around. Jessica and a volunteer were both injured. The 1500 pound manatee rolled onto Jessica's right arm and crushed it under her immense weight. No bones were broken, but her nerves were damaged badly. The Diagnosis: CRPS She was eventually diagnosed with CRPS (complex regional pain syndrome), type 2. The pain in her arm is excruciating. If someone brushes her hand, she winces and sweat beads on her face. Her hand is swollen and sometimes is blue and sometimes is red, depending on if the injured nerves are telling the local blood vessels to dilate or contract.  Jessica can now only move some of her fingers if she is looking at them, otherwise she has no involuntary control of them. She cannot write (she's right hand dominant), she cannot work a computer mouse, cannot put in a ponytail, open a bottle or jar, or a million other little things we take for granted every day. Like sleep..she moves, bumps her arm and is wakened by pain.  Did I mention the EXCRUCIATING pain??? No pain medications reduce it, not even opiods. Local nerve blocks help temporarily but even then, not completely. Amputation would remove a limb that wasn't working but not resolve the pain...she would still have that, forever. The Fix?  Recently, a procedure was done to place a metal implant next to her spinal cord. It is attached to a controller that she could use to increase or decrease impulses and interfere with her over-reacting nerves.   It was working, but then...the metal plate next to her spine shifted. It stopped working. A new pain where the plate was in her neck started. She has sudden periods of complete paralysis down the right side of her body. Her bladder is not working as it should. The surgery needed to be repeated and the implant re-positioned. The revision surgery was performed and initially it seemed like things were doing great. Her right arm was not swollen and red. The pain in the limb was reduced. She could feel her fingertips. Her main discomfort was just "normal" post-op pain. She was so excited! Progress appeared to have been made! She still was having issues with her bladder, but her arm seemed to be going in the right direction. A few weeks after the surgery, things got worse again. Now her feet are swelling and having the same pain as the arm was. This can happen with patients with CRPS...the symptoms can spread to other locations and be just as severe and excruciating as the original location. Next Step: Neirdronate Jessica found out about another option before she had the revision surgery for the plate done. It is a drug called neridronate. The FDA has not approved the drug and it is not available in the US. There is a clinic in Italy, where the drug IS approved, that treatments are being done on CRPS patients and many are being CURED! 80-90% of the patients treated before the one year anniversary of their injury are having resolution of their clinical signs and are able to return to their lives. This treatment will NOT be covered by workers compensation. The zoo and its insurance will not help. She and Eric have to do this alone. The return flight to and from Italy will cost $3000 The treatment will cost $17,000 Jess needs $20,000 to get to Italy, get prepped for the treatment, receive the 4 day treatment protocol with the neirdronate, have checks after the therapy is done, pay for room and board, transportation and someone to translate for them.  This may be her last chance. Why She Needs Our Help  Since the injury occurred in January 2018, Jessica has been unable to work. Her two income household has reduced to one and her partner, Eric, has been shouldering the load alone. He had also been ER, surgery, and rehab chauffeur. Chef, housekeeper and general moral supporter. Her medical expenses associated with the injury should be covered by worker's comp...but all other expenses are mounting. (Including an attorney to ensure worker's compensation is meeting its responsibilities.) All of their savings are gone.  Jessica and Eric need help meeting their day to day expenses having been reduced to one income. They need help with their daily financial needs...groceries, utilities, car payments, insurance. Now they need help to pay for the much needed treatment overseas. Please help reduce their financial anxieties so they can focus on what is truly important...  ...getting Jessica well. One year and counting... As Christmas approaches, Jess is fighting workers comp again. The CRPS that she was told was the type that would not spread, has. Her left leg and foot are painfully affected. Her foot is swollen and the unrelenting, burning pain that was in her right arm is now there as well. The insurance company has been fighting covering for a nerve block to relieve her left leg for weeks. She finally has a date for after the New Year. Keep her in your thoughts. The battle is not won and the fighting is still on-going. She has not been able to work in over a year.