Just over a year ago, Shelley developed life altering symptoms unexplainable to local doctors, which rapidly grew worse and worse. Misdiagnosed by the ER repeatedly, two neurologists, an ophthalmologist, and other various health professionals, life seemed to truly be testing her strength.
Her blinding headaches, vision, facial drooping, slurring of speech, tinnitus, and overall strength continued to worsen much like that of a stroke victim. This rendered her unable to function in her daily life. She finally sought help in Boston with the support and encouragement of family and friends. Here she was diagnosed with papilla edema, a swelling of the nerve in the back of her right eye and was ordered the first of what was soon to become many spinal taps to relieve excessive fluid and pressure. With her mother by her side, they rejoiced in the sweet relief of symptoms! Alas, not only did the symptoms quickly return, but the diagnosis came back as Pseudotumor Cerebri aka Idiopathic Intracranial Hypertension (IIH), an elevation of spinal fluid pressure in the brain mimicking that of a brain tumor and causing her unexplained, debilitating symptoms. While the diagnosis brought relief in the form of answers, her prognosis was looking pretty grim. Shelley's spinal fluid pressure continued and still continues to soar upwards of 42, while the norm is between 8 and 15. This has left her receiving spinal taps every 1-2 months for short-lived relief. It's with these failed attempts, her neurologist ordered immediate brain surgery.
Throughout this horrific ordeal, Shelley has undergone expensive medical tests, MRI's, scans, a slew of trial medications, ER visits, ambulance services, 2 hospital admissions, and frequent 3 hour long drives in and out of Boston. She has also undergone multiple spinal taps to relieve fluid pressure, severe pain, and vision. As if she didn't already have enough on her plate, Shelley lost her job due to frequent absenteeism and inability to perform to expectations because of her failing health.
With a mortgage, two young boys, medical bills piling up, and upcoming brain surgery, she's handling it in true Shelley style, maintaining an upbeat attitude with good humor and with comedic relief as an admin on an IIH support page. She and her family are inspirationally facing this illness that is so emotionally and financially devastating. It would be much appreciated if we could lend her, her boys, and her amazing partner Dean the support they so desperately need. It would be a blessing if this young family could embark upon this journey with one less stressor looming overhead.
Shelley's surgery (Ventriculoperitoneal Shunting) is scheduled for August 20th but may come sooner if a slot becomes available. Because she has been asked to shave her head prior to surgery, my selfless friend plans to donate her hair to Locks of Love in loving memory of her Grandfather. Even in the depths of despair, she continues to think about the needs and troubles of those around her.
I will continue to update you on her progress, and I thank you from the bottom of my heart for your donation!
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