A Small Misstep Leads to a Big Life Change – Community Focus

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“The physical challenges are tough, but the hit on your mental health is even harder.”

Often, when society talks about bone and joint conditions, we consider how one’s body is physically hurting or how their mobility is impacted. Whether it’s the knees, fingers, a shoulder or a dozen other joints,  it’s easy to conceptualize — and sometimes actually see — the physical manifestations of their illness. But there are other, less definite effects of bone and joint conditions: the emotional and psychological ones.

This month’s community guest, Alyssa, understands how emotional and mental health can either help or hinder your care or recovery plan. She also is the example of a patient who could benefit from a new initiative at the Alberta Bone and Joint Health Institute — MAP to MOTION.

A small misstep leads to a big life change – and an emotional rollercoaster that’s not often talked about.

Like many young school girls, Alyssa’s childhood was filled with sports and activity. She loved playing soccer, dance and especially loved gymnastics. At the age of 13, while practicing her gymnastics skills, Alyssa had a funny landing that immediately irritated her ankle. Hoping it was merely a sprain, a doctor’s visit would later reveal that Alyssa had broken a small chip at the tip of her tibia — a break they had never seen before.

The break was painful. An experimental procedure where surgeons attempted to put the chip back in place didn’t take, and the chip continued to float around, slowly tearing at the cartilage around her ankle.

Over the next 17 years, Alyssa’s condition worsened and she experienced a number of challenges:

  • Four more surgeries to attempt to clean up her break and strengthen her ankle
  • A decline in her quality of life and ability to perform basic tasks or activities
  • Acute, sharp pains that led to daily use of extra-strength painkillers
  • A resistance to strong painkillers and anti-inflammatories for short term relief
  • A lack of trust in her own body to perform its functions
  • A sense of hopelessness that it would ever get better
  • A sense of isolation in her condition

Specialist to specialist, appointment to appointment, Alyssa was getting extremely disheartened that she would never find the support she needed to get back to normal. Though helpful, weekly physiotherapy appointments didn’t do the trick and the pain persisted. Frustrated at where to go next, Alyssa was eventually connected with an orthopedic surgeon who would change the course of her condition and give her hope when she needed it most.

Moving toward motion

With a new orthopedic surgeon in her corner, Alyssa felt renewed. “He booked an MRI and immediately understood where I was coming from,” she recalls. “He believed in me. He listened. He was passionate about my recovery and in giving me back my life. He said to me, ‘I trust you,’ and I was nearly in tears. Finally, I found someone who really cared.”

Alyssa had her sixth surgery in March 2020 where the surgeon took a piece of the cartilage from Alyssa’s knee to use in her ankle. She also has two internal braces and a graft to provide additional stability. So far, her recovery has been slow, but she feels more confident than ever that with the right supports finally in place, she can get there. Her confidence and outlook are boosted, and she’s looking forward to the future. Her goal is to get her strength back in her entire leg, to have stability in her ankle, to be pain-free and — most importantly — to trust in her body to keep her upright and walking normally again.

Alyssa’s advice for patients

  • Stay connected. Know the resources that are available and work with your medical team to find a network that can support you through your journey. Connecting with patients in similar circumstances can ease the clamp of isolation that sometimes feels so strong.
  • Get informed. Finding credible information so you can be your best advocate is key. Ask your medical team for trusted resources that can help.
  • Get a second opinion. It’s your body and your health. You have nothing to lose and a lot to gain by asking for a second option.
  • Find balance. It’s hard to pull back and not tackle your to-do list when you notice an improvement and feel better. Taking a balanced approach will help you feel good mentally and physically.

There is a significant information gap about bone and joint health in Alberta; MAP to MOTION is our chance to fill this gap. With support from our partners, MAP to MOTION will link information from all the different bone and joint services that Albertan patients need, acting as a central hub of data for bone and joint knowledge. By capturing and analyzing the data, healthcare providers can develop more personalized, more effective treatment plans that support the overall wellbeing of patients like Alyssa.

The first of its kind in the world, MAP to MOTION partners with researchers to provide clear and comprehensive information to healthcare providers as they work to create innovative solutions to improve bone and joint patient care.