JOYCE EBERL
Joyce Eberl is in her mid-fifties and has Amyoplasia / all-extremity AMC. She has lived in Kettering, Ohio her entire life and has been married to her husband, Paul, for over 20 years. Joyce had many surgeries in childhood related to her Arthrogryposis; the most involved operations occurred on her left elbow and right knee. Her left elbow could not bend, so the surgeons attempted to gain some range of motion and movement. [She had assumed for years it was fused at a 90-degree angle, but due to an unfortunate event, learned it was actually a muscle transfer that was performed.] This surgery afforded Joyce greater independence.
Her right knee was fixed in a bent position and, at the age of 10, she had a very major surgery at the University of Michigan to fuse her knee straight. This enabled her to walk independently for the first time. However, the nature of the surgery injured the growth plates in her leg and her leg stopped growing. By the time she had finished growing she developed a 5-inch difference in length between her legs. Despite this, she continued to walk independently with a shoe lift and brace on the shorter leg. Even though she has a significant leg length discrepancy, she still feels that the surgery was very beneficial because she wouldn’t have been able to walk without it. Despite her physical limitations, she obtained an Associate’s degree in Mental Health Technologies, enjoyed a 30-year career as a customer service representative for a local, turned national, Cable Company, drives independently, and owns her own home. She is also the primary caregiver for her husband, who lives with multiple sclerosis that has left him completely paralyzed.
Aging with Arthrogryposis has been very challenging for Joyce. Falling from time-to-time has always been something Joyce dealt with. However, in 2012, these falls became more frequent and much more severe. Like most people with Arthrogryposis, the ability to catch herself in a fall is extremely impaired, and as a result these falls resulted in concussions. To further complicate matters, her medical team discovered she developed severe spinal stenosis in her neck from years of using her head and neck in place of her arms. The doctors recommended immediate removal of a vertebra in her neck and fusion of the bones around the area to prevent complete paralysis. The thought of her neck being fused was utterly terrifying, as Joyce relies on that movement to be independent in activities of daily living. She sought the opinion of eight neurosurgeons, whom all recommended the surgery immediately. Only one was willing to remove the vertebrae without fusion of her neck. She went with that surgeon. The surgery was successful and her risk of immediate paralysis was mitigated.
Life with occasional falls went on as usual. The falls, however, continued to result in concussions. In order to preserve her head, she obtained a power chair for community use and found freedom she hadn’t experienced in a while. She continued to work part time and take care of her husband physically and managed the in-home aides who cared for him. Unfortunately, in October of 2016, Joyce experienced yet another fall, but this time, much more severe than in the past. She fell off the top of her wheelchair van ramp, blacked out, and was transported to the hospital. It quickly became apparent that her arm was also severely injured. Instead of being stuck at 90 degrees, it was straight again, preventing Joyce from doing the simplest of activities she could before, like pulling up her pants. She was also in extreme agony.
Despite voicing her concerns that her arm was hurt and insisting she wanted to see a hand surgeon, that request was never fulfilled at the rehab unit because the scans done in the ER looked ok. After 4 months, she finally saw a hand surgeon and together they figured out that she likely had a muscle transfer as a child that held her arm at 90 degrees. The records of her original surgery were not available, as the operation had occurred too long ago and there were no scans of her arm before the accident. The hand surgeon agreed he could “redo” this surgery using a cadaver muscle to try to restore function. She had the surgery, and it resolved a majority of her intense pain, but whether it truly worked to restore all function is still to be determined. The surgery, unfortunately, caused her hand to be significantly weaker than in the past.
Joyce has expressed a need for younger children with Arthrogryposis to request and keep a copy of their surgical notes, because having that information from her original elbow surgery would have made a significant difference in accurately diagnosing her arm injury sooner.