It is a common & long-established phenomenon that there often exists a disconnect between most scoliosis patients and their treating doctors. One study found that while 90% of scoliosis patients would like more time to discuss their condition with their doctor, only 5% actually had the opportunity to do so. It is also well-known that traditional methods of scoliosis treatment, such as bracing & surgery, have long-term psychological ramifications that are poorly understood at best, and outright ignored at worst. CLEAR Institute is aware of this unfortunate fact, and we feel that the responsibility of a doctor should not merely be limited to the physical status of his or her patient. This is one of the reasons why we are fervent supporters of the Scoliosis Mentorship Program (
www.scoliosismentors.org ).
Studies published in various scientific journals regarding the experience of adolescents treated with orthopedic bracing to halt the progression of their scoliosis come to heartbreaking conclusions that barely hide the underlying emotional anguish beneath a veneer of academic jargon:
"Girls with scoliosis had a statistically significant difference in perception of happiness and satisfaction."
J Adv Nursing, 2001 Sep; 35(5):683-90
"Almost all of the participants reported having to deal with stress, denial, fear, anger, and shame."
Scoliosis, 2006 May 22;1:8.
"As they grow older, patients feel increasingly ashamed of their body, as they are more concerned about the future effect of the deformity on their body."
Eur Spine J, 2007; 16(4):537-46
Patients undergoing surgical treatment often fare little better, according to research:
"There was no change in body image, Visual Analogue Scales, Oswestry Disability Index, or short-term McGill Pain Questionnaire scores by 2 years follow-up."
Spine, 2002; 27(14):1543-50
"49% of surgically-treated patients admitted limitations of social activities due to their back."
Eur Spine J, 2001 Aug; 10(4):278-88
"The study group [of 103 idiopathic scoliosis patients fused with Harrington rods] had a higher rate of secondary surgeries for complications or late disc disease below the fusion, a higher back pain score, more difficulties with normal daily activities, needed more regular pain medications, and had more episodes of back pain."
Spine, 1992 Aug;17(8 Suppl):S249-53
These facts are not meant to disparage the orthopedic surgeons who prescibe braces & perform surgeries for their patients, nor are we stating that every surgically-treated patient will have a negative experience. However, the emotional impact of these procedures should not be swept under the rug, and should be considered, along with the physical risks, before they are undertaken. To do otherwise is a grave disservice to the patient, for it is often the invisible scars that take the longest to heal.
