There are certain sounds that Scott Malmstrom had never known. He was born with hearing impairment, and it gradually got worse throughout his life. By fourth grade, he began experimenting with hearing aids. Over time, he became what he calls a “professional lip reader.”
Hearing aids didn’t help much with the type of hearing loss Scott had. “Where he struggled was speech discrimination – being able to recognize and understand what's being said,” he says. “That's where they eyes take over. That's what I've done over many years and became very good at it.”
But his diminished hearing did keep him from experiencing certain things, and he says it affected his communication with those he loved. Today, through the magic of cochlear implants, Scott is hearing new things and experiencing life in a way he hadn’t quite imagined. [...]
Imagine listening in real time to the thump, thump of your own heartbeat, the rush of your blood pulsing through your veins, and even the slightest twitch of your eyes - all in surround sound. Those are but a few of the symptoms that Wendy Tapper was experiencing when she arrived at the Mayo Clinic in May of 2012.
The Journey to Mayo
Outgoing and energetic Wendy, of Kansas City, Mo., enjoyed a career as a producer and publicist. Bringing people and ideas together was second nature to Wendy and aided in her determination to find the answers in her own health care.
For three years prior to coming to Mayo Clinic in spring 2012, Wendy went from doctor to doctor and endured batteries of tests, scans, appointments and misdiagnoses. Her rare condition ultimately revealed by Mayo physicians was masked in part by two distinct illnesses - breast cancer and a stroke.
While those illnesses and the treatments Wendy was receiving are life-altering, they were compounded with the escalation of an underlying third and separate issue. It was the escalation of her symptoms of dizziness, hearing loss and a drastically diminishing quality of life that brought Wendy to Mayo Clinic. [...]
I struggled for years with extreme fatigue, major skin problems, muscle weakness, escalating eye issues, and a host of other unexplained symptoms. I moved to Georgia with more and more symptoms. I developed relationships with new doctors and developed new symptoms – seizures and heart-related syncope. I went to see a neurologist, who began to run tests. In the meantime, I had regular quarterly blood panels by my regular physician, who upon reporting to me by phone noted no irregularities. I was told time and time again to stop chasing a diagnosis. My family continued to watch my decline.
After running numerous tests, my neurologist could only ascertain that I may have had some mini-strokes. My neurologist referred me to a major university hospital. After two visits, and being practically laughed out of the place, I began to have serious doubts about my symptoms and began to believe the many specialists and psychologists who told me it was emotional response. [...]
In January 2013, Carly Edgar, an otherwise healthy 20-something, found herself in the hospital and in severe pain. The pain seemed to originate from near one of her ribs, but her local doctors couldn’t identify the source. She spent a week in the hospital without any answer. She was released, but it wasn’t long until she was back again.
Carly rated her pain at 10 on a 10-point scale, but doctors started to doubt her symptoms. They gave her pain medicine, but they also recommended antidepressants. When her boyfriend noticed a bump forming on her nose, she was told it was likely just a pimple. After a second week in the hospital, with things only looking worse, Carly asked to be discharged, and she and her boyfriend traveled to Mayo Clinic in Rochester, Minnesota, in search of answers.
Within a few days, Carly had her surprising answer – a rare autoimmune disease called relapsing polychondritis. The disease attacks cartilage, and it was affecting not only her ribs and her nose, but also her heart, where doctors at Mayo found inflammation. She admits that it was a difficult diagnosis, but it also gave her hope that treatment could control her symptoms. [...]