helloAre you worried about your scoliosis worsening? Here's some good news for you! A study which was done over six months in women and girls with Rett syndrome showed that intensive and individualized exercise programs prevented the progression of scoliosis i.e., sideways curvature of the spine. After observing that two young patients in this study were cured of the deformity of the spine, the researchers quoted "This result is highly significant as no spontaneous scoliosis curve regression was ever reported in people with RTT [Rett syndrome]."
Improvements in motor skills gave further hopes for the potential benefits for these patients from the exercise. However, it was noted by the researchers that they need more studies with appropriate control groups that are necessary to prove and confirm the results.
The Journal of Clinical Medicine published this study under the name "Intensive Postural and Motor Activity Program Reduces Scoliosis Progression in People with Rett Syndrome."
About 94% of people who suffer from Rett's syndrome present with scoliosis with the median age of onset around age 10. And 85% in the age of 16 and above.
A curved spine causes shortness of breath which might lead to respiratory failure - a condition affecting the lungs when not enough oxygen is available in the blood. Scoliosis can also affect our day-to-day life by making it painful to walk or do other activities and movements.
A spinal brace is recommended in some patients to help with posture and sitting. However, neither there is no evidence that progression of neuromuscular scoliosis can be prevented nor that people with Rett syndrome can be benefitted from a spinal brace. Spinal surgery on the other hand is reportedly effective at correcting the severely curved spine, but it was noted that patients often choose not to undergo the surgery.
Physical therapy is believed to be effective in correcting the posture and can delay the need for surgery. But the studies are limited in this field and do not address interventions aimed at scoliosis.
A group of 20 girls and women with Rett syndrome were selected for a study that developed and tested a physical activity program to prevent the progression of scoliosis in Italy and Israel by researchers.
Women and girls, with a mean age of 15.6(age range, 3.8 to 38.3) were enrolled from the Italian Rett Association (AlRett) database. And they all lived with their parents.
This six-month-long program was personalized according to each participant and was carried out in their daily environment for one hour a day for five days a week, under the supervision of the caregivers. It consisted of four to seven activities that were designed to correct posture and strengthen the trunk muscles. They included walking small distances while being held by the hand or using the treadmill for 20 minutes a day with assistance, sleeping with a "U" shaped pillow under the scoliotic curve on the right side to extend the left side of the trunk. All these were conducted in the comfort of patients' homes.
The first three month's progress was monitored by a therapist through video calls with caregivers, answering their questions and making programs adjustments as needed along with other guidance.
Cobb angle, a standard measure of the degree and severity of spinal curvature was evaluated by researchers before the intervention and a year later into the program along with changes in motor functioning assessment. For statistical analysis, patients' cobb angle was used to distinguish between those whose curves improved and whose scoliosis worsened.
Keeping a change of 5 degrees in Cobb angle as the mark for the progression of scoliosis, it was noted that 70% of the patients did not worsen their curvature of the spine by the end of the program, this showed that the intervention prevented their scoliosis from progressing further.
Among the patients of this study, an average curve progression of 1.7 degrees was noted over one year, which is much lower compared to the annual average reported in Rett literature, which ranges from 14-21 degrees. Along with this, there was an improvement in the motor abilities of the patient when evaluated using Rett Syndrome Motor Evaluation Scale.
Out of eight patients, four had an improvement in Cobb and of at least 5 degrees, On the contrary, six out of 12 people had a worsening curvature of more than five degrees.
Two of the youngest children under this study aging 3.8 and 6.5 years and both with unstructured flexible scoliosis, indicating a curvature but no spinal rotation – learned to walk on their own during the program, so "the intervention was able to eliminate the scoliotic curve," the researchers wrote.
Another young patient about 13 years old who was the only patient with severe Rett manifestations according to the Rett Assessment Rating Scale, showed 3-degree ease in her curve. The girl who previously needed to "lie down or be fully supported" during waking hours, gained an ability to stand up and walk with support.
To conclude with "The above-presented cases … reiterate the fact that physical activity is extremely important to those with RTT continuously from a young age and that improvements in functional abilities can be achieved by this group of clients at all severity levels and all ages," the researchers inferred.
Due to the limitations and small size with the lack of a control group in this study, additional studies with a larger number of patients are needed to confirm the results, the team noted.
However, the researchers claimed that the present study proposed an effective method of preventing scoliosis progression in people with RTT, a population with no standard treatments for scoliosis progression that has ever been reported.