On Monday, I learned something I never knew before, even though it was the cause of all the problems I've had with my hip my whole life.
Before my memory begins, I had surgery and was in a series of braces for various lengths of time. My mom always told me it was because I was born with a dislocated hip. Eventually, when I was managing my own health care, I heard the term "hip dysplasia". So that's what I thought my problem was, and the typical treatment for a person with hip dysplasia and severe osteoarthritis is total hip replacement surgery. When I was younger, I was told that I should wait until I was 40 to get the surgery done. When I was 40, I went to the orthpedist and he encouraged me to wait a little longer. I kept hearing that my life was going to change with hip replacement surgery. All the people I knew who had hip replacement surgery told me to stop waiting and just do it.
Well, as it turns out, I didn't have hip dysplasia. I had a childhood disease called Legg Calve Perthes. I heard these three words for the first time on Monday. My trust in my orthopedist is shaken. How could I know know that this was what I had? How could I be hearing this for the first time when I'm 43 years old?
At any rate, he still doesn't want to do the surgery. I am going to get a second opinion, because there are some things about the LCP that don't gibe with what I went through (osteotomy surgery at not quite 2, a full 2 years before the disease is supposed to show up, for example). In reading about it, people who have LCP and get total hip replacement surgery can have good outcomes, but recent studies (small studies, unfortunately), have suggested that there is a significant increase in neurological complications in THR surgery on LCP patients. And I can't have the latest and greatest in surgical techniques because my hip is so very deformed.
I'm kind of thrown. The surgery that I've been hearing "this will change your life for the better" all my life suddenly seems much more tenuous. My orthopedist said that I have to set aside all the success stories I've heard, because my surgery will be different and my results won't be so strong. On the other hand, I was reading a forum of people who have had or are going to have hip replacement surgery, and there are some people on there who are thrilled with the results of their surgery. I would like to have an increased range of motion, because I'm worried about the lifetime impact of overcompensating on all the other joints in my body.
On the plus side, I have ankylosing spondylitis in my hip, which my ortho called "a blessing", because it further limits my already severely limited range of motion, which actually reduces the pain.