Anyone familiar with Perthes Syndrome?

[dbsam]

Does anyone know someone with Perthes Disease? If so, how is their pain level and how do they manage the pain? At what age did they need their hip transplant? Do they still have problems with arthritis in the surrounding area after the transplant?

My husband has been having extreme pain in his hip and was told this week he had Perthes syndrome. To make a really long story a little shorter…He had problems as a child and was taken up to Mayo in Minn. He was misdiagnosed as having one leg shorter than the other (which he had…they just didn’t realize it was from the Perthes.) Perthes occurs in children, mostly boys, between the ages of 2 and 12. He assumed his current hip issues were a result of several knee reconstructions and the fact that one leg is shorter and knew he may need a transplant one day...he was just shocked to hear he had this condition and disappointed he wasn't aware of it earlier.

TIA

[journeymom]

My son is almost 11 y.o. and went through a bout with Perthes when he was 4 y.o. It was in his right hip, and his right thigh was slightly atrophied compared to the left. But it caught up quick enough after he got better.

I have to admit I'm a little confused. Your husband has Perthes currently? I didn't think that's possible, I thought it was exclusive to kids. Is it possible that, yes, he had Perthes when he was a kid, and it left some permanent damage to his hip? And so the pain he's experiencing now is from that damage.

At what age did they need their hip transplant?

Sorry, obviously my son's experience is limited so far. The research I did indicates that yes, adults who've had Perthes when they were kids are more likely, but not guaranteed, to get arthritis. It's possible that my son will get debilitating arthritis and need a hip replacement. Time will tell.

I wish I had more to share with you. Best of luck to you and your husband, I'm so sorry he's in such pain!

[journeymom]

I did a little more research. Wow, I didn't realize to what extent Perthes affects young and middle-aged adults. That's pretty discouraging. I thought problems didn't resurface until older adulthood.

Aside from hip replacement, your dh might also look into hip resurfacing.

Does he swim? It's the best way to keep physically active with this disorder.

Again, I wish you both the best.

[dbsam]

Journeymom...thanks for your reposnse.

The doctor said my husband had it when he was young but wasn't diagnosed properly. My husband was very active and that continued to damage the hip. So his problems now are from the perthes when he was young.

He doesn't swim now because we have no pool. But we may need to find a place for him to swim. Unfortunately, some of the activites he did while younger were quite hard on his body...skiing, racing motorcross, etc. But he also swam a lot and cycled which were good. He's also never been overweight and the doctor said that helps a lot. The doctor is surprised he went as long as he has w/out pain. (My husband is 47 and the more intense pain started a year ago; prior to that is was not bad.)

Based upon what the doctor told my husband and we've read online...it sounds like since your son was diagnosed and treated, it is probably less likely that he will have complications when he is older.