Chiari Malformation Changed This Athlete’s Life Forever

 

Recently, twenty-two year old Jordan Ray of Wellington, Florida spoke with a reporter from The Palm Beach Post, recounting how her life changed in April 2015 during a softball game.

She played third base for her high school team at Palm Beach Central. While diving for a ball she hyper extended her neck and lost consciousness for several seconds.

Her immediate reaction was to “keep going” even though she was now coping with a severe migraine accompanied by blinding lights and loud background noise.

Jordan kept playing but was struggling. She told her teammates that she was OK. Then one of the coaches became concerned about her condition and took her out of the game. At that point, the coaches suspected that she had a concussion but an orthopedic surgeon decided that it was whiplash.

However, the migraines continued and Jordan was positive that something terribly wrong had happened. Jordan was examined by a neurosurgeon several months later. He identified the disease after asking two questions.

If you sneeze, do you feel discomfort or pain?

Do you feel any pressure in the back of your head?

When Jordan answered “yes” in both instances, the neurosurgeon told her that she had a disease called Chiari malformation, a rare neurological disorder.

The Mayo Clinic lists a birth defect as the cause of Chiari malformation. Brain tissue extends into the spinal canal and blocks spinal fluid. The NIH estimates that one in one thousand people are affected by the disease.

Symptoms of the disease vary and can include neck pain, headache, balance or hearing issues, numbness or weakness, dizziness, difficulty speaking or swallowing, vomiting, buzzing or ringing in the ears, insomnia, curvature of the spine, depression, and difficulties with fine motor skills or hand coordination.

One week prior to her last softball game, Jordan visited several universities that considered her as an excellent prospect for their team. That was her goal until it was derailed by Chiari.

The Operation

The neurologist discussed several options with Jordan. He recommended a surgery called “Chiari decompression.” The surgeon opens an area in the skull using a patch to cover the spot. The opening in the back of the skull is molded allowing a free flow of the spinal fluid.

The operation took place at Palms West Hospital in December 2015. Although it was a success, the migraines along with other symptoms began again several months later.

It seems that scar tissue had formed over the site of the surgery, blocking the cerebrospinal fluid.

Necessity Brought About Her Invention

Jordan began monitoring her symptoms. Even with all the apps and health journals that are currently available, she was unable to find one system that can track a chronic condition on a daily basis.

That prompted her to invent a journal called the Limitless Medical Log. The log makes it easy for people such as Jordan to track the symptoms brought about by their medical conditions.

How it Works

The log features a pain level chart of the human body. Each day the user indicates on the chart exactly where the pain is and the severity of the pain. In this way, the doctor can review the chart and analyze the progression of the patient’s pain or other symptoms.

Jordan laid out her mission plan. To put every patient in charge of their own health.

A Free Limitless App

Jordan is planning a free app for Android and Apple devices. The app will have paid optional upgrades and obviously be more portable.

Jordan points out that even if she omits what appears to be an insignificant piece of information, that may impact her treatment. She considers the launch of the new app another way to promote awareness for Chiari malformation.

Jordan and the Village of Wellington

Jordan has been supported in her efforts to boost awareness of Chiari malformation by the Vice Mayor and staff of the Village of Wellington.

They worked together organizing purple lighting for the Village Hall memorial fountain and clocktower during the month of September. Purple is the color of Chiari malformation awareness.

Jordan is writing a book about her transition from sports to coping with Chiari. She has received various speaking engagements, including a chronic illness forum. She intends to continue her programs dedicated to Chiari awareness.

Her speech to two hundred forum attendees included her triumphs and struggles. She called attention to the need for support for people constantly dealing with pain.

Jordan often thinks back to her mental state when she was playing softball. She tries to maintain that level of courage although her coaches are now her doctors and family.

Jordan asks that people check www.limitlessmedicallogs.com for updates on her new app. The Limitless Medical Log is also available for $15.99 at the site.

 

Rose Duesterwald

Rose Duesterwald

Rose became acquainted with Patient Worthy after her husband was diagnosed with Acute Myeloid Leukemia four years ago. He was treated with a methylating agent While he was being treated with a hypomethylating agent, Rose researched investigational drugs being developed to treat relapsed/refractory AML.

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