Often, we take for granted our good health and the belief that by taking care of ourselves, we can avoid or at least overcome any health issue that should arise. But then, something comes out of nowhere, something that is confusing and rare, something that will change your life so thoroughly that you wonder how and why this could possibly have happened! That sums up Claire's recent diagnosis of CRPS!

 

Complex regional pain syndrome (CRPS) is a rare disorder of the sympathetic nervous system characterized by chronic, severe pain. The key symptom is continuous, intense pain out of proportion to the severity of the injury, which gets worse over time. CRPS typically occurs after an injury, trauma, or surgery when a sympathetic nerve in the body is damaged in some way, causing it to malfunction. It usually affects an extremity (foot, leg, arm, hand). CRPS is extremely rare, affecting only 5 in 100,000 children per year and is often misdiagnosed. Early diagnosis and treatment can significantly reduce long-term effects.

On December 20, 2021, Claire experienced a traumatic crush injury to her left foot/ankle. That day, a 45-pound plate slipped from a friend's bar and fell onto her foot/ankle while weightlifting. Little did she know that at that moment, her life would be altered...One minute she would be lifting and the next, a heavy weight would come crashing down onto her foot, causing sharp pain, immediately become non-weight bearing and would describe pain symptoms for the next four and a half months to various doctors and technicians, that simply didn’t make any sense based on the findings of her X-rays and MRIs. (Pins and needles, throbbing, stabbing pain, swelling, hypersensitivity, her foot ice cold & turns purple...mottling, the hair on her leg stopped growing, toenails stopped growing and have become brittle, she endures severe muscle spasms and has experienced paralysis)

 

 

 

 

Four and a half months after the initial injury, Claire was evaluated and given a confirmed diagnosis of CRPS (Chronic Regional Pain Syndrome) by a team of doctors at the John Hopkins All Children’s Hospital in St. Petersburg, Florida. Claire qualified for their In-Patient Pain Management Rehabilitation Program for CRPS and will begin treatment on June 6, 2022!

 

Claire’s Journey with CRPS:

 

Claire, who was still in pain and on crutches nearly a month after the initial injury, was told on January 17th by her orthopedic that there wasn’t anything structurally wrong with her foot and that she would need to “suck it up and push through the pain”. So what did she do? Claire continued intensive physical therapy several times a week for the next few weeks all while enduring severe pain and swelling in her foot. 

 

On February 14th, Claire’s orthopedic ordered another MRI because her symptoms just weren’t making sense. This time the findings showed a bone plate irregularity with subchondral marrow edema. February 23rd, Claire was placed into a cast and would be non-weight bearing again for the next four weeks so that she would heal. During those four weeks, Claire continued to experience severe pain in her left foot. On March 23rd, three months after the original injury, the cast was removed, Claire’s foot was still swollen, and she was still in pain. As you can imagine, this was incredibly frustrating. Claire was then sent for a nerve study and an ultrasound of the foot to check for nerve damage.

 

 

Ultimately, on April 13th, Claire was diagnosed with CRPS. Having never heard of CRPS, it was research time for Claire and her family. Their research led them to the John Hopkins All Children’s Hospital in St. Petersburg, Florida. Due to a cancellation, Claire was able to get an appointment quickly to be evaluated by their Chronic Pain Rehabilitation Team on May 4th...Claire's 18th Birthday!

 

 

After Claire was evaluated and the John Hopkin’s team of doctors confirmed her CRPS diagnosis, she was accepted into their In-patient Chronic Pain Rehabilitation Program. Claire will be checking into John Hopkins All Children’s Hospital on June 6th, five and a half months after the initial injury! The treatment will consist of a holistic approach, with a team of specialists including physicians, physical and occupational therapists, and psychologists all working together to personalize treatment in a way that will allow Claire to heal. Once Claire is checked into the hospital, she will be taken to surgery, where a catheter will be inserted into her leg and will deliver a local anesthetic. The anesthetic will shut down the nerve system so that Claire will not feel any more pain in her foot and will be able to do intensive therapy. Therapy, in turn, will "re-set” her sympathetic nervous system. The treatment doesn't guarantee that all of Claire’s pain will be gone or complete symptom remission, but it should be significantly decreased. While in the hospital, Claire will relearn how to walk normally on her foot and will finally be able to get rid of her crutches and scooter!

 

Once Claire is finished with the one to two-week In-patient program at John Hopkins, she will have to continue intensive outpatient therapies at home and while at university. With the strength of God, knowledgeable doctors & therapists, intensive treatment, and the support of friends, family and community, Claire will finally be able to get back to "living life"! We appreciate those able and willing to donate to help Claire and her family with current and future medical expenses!