As at 5th September 2008, 200 people had completed the online survey - this is a brief outline of the responses collected

 

INITIAL DIAGNOSIS?

 

Perthes                                                                                                 86.2%

Pulled Muscles                                                                                        4.5%

Growing Pains                                                                                        10.7%

Other?  Polio, toxic synovitis; irritable hip; osteomilitis then juvenile arthritis; injury from trampoline; attention seeking; hip infection; sprain; recent diagnosis at 43 years & another at 51 years; exaggeration of small injury by limping; bone infection; spina bifida also; hyper-mobile joints; torn ligaments in knee

GENDER?

 

Male                                                                                                     64.0%

Female                                                                                                  36.0%

 

AGE AT DIAGNOSIS?

 

Under 6 years                                                                                      39.6%

6 years or older                                                                                    61.4%

 

WHICH HIP?

 

Unilateral - Right hip only                                                                      43.0%

Unilateral - Left hip only                                                                       40.0%Bilateral - Right hip first                                                                         6.0%Bilateral - Left hip first                                                                          7.0%

Bilateral - don't know which first                                                            5.0%

If bilateral - was one hip worse?  Both appear to be about the same at present; second hip diagnosed whilst undergoing treatment for first hip; some minor damage to other hip

 

TREATMENT RECEIVED?

 

Restrictions                                                                                            47.0%

Crutches, walking frame or wheelchair as needed                                   53.9%Traction                                                                                                 34.3%Bracing or casting (including callipers)                                                   36.1%Tenotomy & petrie casting                                                                        5.9%Osteotomy - Femoral                                                                                11.0%Osteotomy - Pelvic                                                                                    6.5%Other Surgery - Triple Osteotomy, Shelf Procedure etc                           11.7%

External Fixator                                                                                       4.1%

Other?  sulfer liquid, then caster oil (1944); physiotherapy; special shoes; steroids; ibuprofen; new osteotomy/femoral reshaping surgery; calcium pills; leg sling; pulsating shock to leg twice weekly for several years; hardware removed post-osteotomy; 'wait & see'; physiotherapy; total hip replacements (one hip done twice); plate affixed surgically, then removed

 

AGE NOW?

 

15 years or younger                                                                                 49.5%

16 - 25 years                                                                                            11.3%

26 - 35 years                                                                                            12.8%

36 - 45 years                                                                                            12.8%

46 - 55 years                                                                                            11.8%

56 - 65 years                                                                                              1.5%

66 years or older                                                                                        1.0%

 

DO YOU HAVE ANY OF THE FOLLOWING?

 

Limp                                                                                                          91.2%

LLD (Leg Length Discrepancy)                                                  54.9%

Other orthopaedic or musculoskeletal issues with Perthes leg?  limited ROM & increased pain; swagger; numbness down thigh; achilles & peroneal tendon ruptures & repairs; popping hip; inward turned toes; cannot run; stairs becoming very difficult; mild curvature of spine & limited ROM; early arthritis; hip, knee, ankle & lower back pain, with hip 'failing' to support; muscle atrophy in affected leg; pelvis out of alignment, coccyx & back problems; ganglion cyst in hip joint, bursitis & other unexplained effusion & swelling; leg cramps; restless leg syndrome; osteo chondritis left medial condile; femero acetabular impingement (torn labrum); osteoarthritis; weakeness in leg & difficulties weightbearing

 

HIP REPLACEMENT OR RESURFACING?

 

Have you had either surgery                                                                      5.4%

I am on the waiting list for either surgery                                                 5.2%

I am considering the need for either surgery                                           38.0%

No need for either surgery in the forseeable future                                51.5%

Other?  Generally the responses seem to indicate that overdoing things can increase severity of symptoms: back pain; doctors refusing to consider THR until older; unable to walk far & unable to run at all; having arthroscopic hip surgery done to correct impingement and repair torn labrum, this is instead of hip replacement at this point, as not good candidate for hip resurfacing                                                                                                          

 

YOUR GENERAL HEALTH?

 

I am and have been in good health                                                          67.0%

I have, or have had some minor health issues                                           25.6%

I have, or have had some major health issues                                            5.9%

I have had surgery (orthopaedic or musculoskeletal),

other than for perthes                                                                              5.4%

Other?  Surgeries needed on foot and knee of good leg, due to increased stress on them; breast & colon cancer; achilles and peroneal tendon repairs and releases; overweight and hypertensive; one person ran two marathons at 33 years of age; severe lower back problems; pain all day, everyday; coronary artery disease aggravated by limited ability to do cardio exercise; clubfoot; spina bifida; dislocated right ankle; major knee problems as a result of limping & years in braces;

 

ANY OTHER RELEVANT INFORMATION?                         

 

Generally responses indicated frustration at physical restrictions, constant pain & also other injuries to ankle and/or knee joints, or 'good' leg  due to limping, over-compensating or just weightbearing differently through perthes leg; still can't sit cross-legged, due to limited rotation in hip; live day-to-day with close to unbearable pain in left hip, lower back, shoulder and occasionally ankles - have chosen surgery over medication, as not wishing to destroy digestive system as well; a few months after hip replacement, had to have tendon release in hip area; one child also has Down Syndrome;