A Long-term Follow-up on Functional Life Qualities in High Lumbar Lumbosacral Agenesis Patients

D. P. J. ALMDALE, M.D., CHARLES BUKREY, M.D.,RAYMOND LOVETT, M.D.,ANN SWAGMAN, R.N., M.P.H., C.P.N.P., BARB KENIEWSKI, O.T.R., AND NANCY BRADLEY, L.P.T


Twenty patients have been evaluated and diagnosed with lumbosacral agenesis at the Area Child Amputee Center (ACAC) in Grand Rapids, Michigan. Of that number, 18 survive and nine are 18 years of age or older. Six have participated in phone/chart evaluation. Three have also been evaluated at ACAC. Purpose of the study was to evaluate long-term functional qualities of first lumbar level lumbosacral agenesis patients who have been treated by bilateral subtrochanteric amputations and prosthetic fitting within the first few years of life. Stabilization of spine remnant to the pelvis was not performed.

Excellent sitting balance was seen uniformly in these patients, with or without use of a pelvi-thoracic bucket. While sitting, both hands were free for use. Hand-walking, which is used by nearly all respondents while in the home was facilitated by absence of contracted and functionless lower extremities. Back pain was not noted to be a problem even among the oldest patients. Mild restrictive pulmonary disease was seen though none receive ongoing treatment for it. Hydronephrosis and urinary tract infections were problematic for some, though gastrointestinal complications other than congenital anomalies were few. Upper extremity complications including ulnar and median neuropathies, hypertrophy and degenerative changes about the elbow, and rotator cuff tendonitis were frequent in this group of patients with weight-bearing upper ex tremities.

In general, the functional qualities of life of these first lumbar level lumbosacral agenesis patients, managed by early bilateral subtrochanteric amputations and prosthetic fitting, and no stabilization of spine to pelvis, were excellent.

Area Child Amputee Center, 235 Wealthy S.E., Grand Rapids, MI 49503