XLH Network, Inc. Forums

Pediatric Issues => General FAQs => Topic started by: YasminBoatman on February 14, 2020, 03:19:15 AM

Title: Hip Replacement
Post by: YasminBoatman on February 14, 2020, 03:19:15 AM
Hi I am 33 yrs old and have had xlh rickets all my life. I was just told I need both hips replaced. I was just wondering has anybody else been through this surgery at a young age?
Title: Re: Hip Replacement
Post by: GinJones on February 14, 2020, 04:50:33 PM
I'm much older than that and haven't had my hips replaced, although I was advised to when I was around 50. As it turned out, the problem wasn't actually with my hip joint, but with calcification of soft tissue around the joint. I do know of one person who needed hip joint replacements in her thirties, but I believe, if I remember correctly, the doctors advised against it because of her age. Let me see if I can find out more from her.

Make sure your doctor has experience with XLH, and perhaps consider getting a second opinion. Doctors who haven't dealt with XLH patients before are often surprised by what they find once they cut us open, and that's never good!

Also, I'm not sure if you know, but it's generally recommended that you should be on  treatment (either phosphorus and calcitriol supplements or burosumab, and, personally, I'd want to be on burosumab, since it does demonstrably better at healing bones) for several months before surgery, as well as during the healing period.

I'm hoping that when the natural history study (a collaboration among the Network, Ultragenyx and Yale) launches, we'll start to get more data on when patients are getting joint replacements. The last I knew, asking about that was in the study. We know joints are being replaced earlier than the general population, but we don't know exactly how early.
Title: Re: Hip Replacement
Post by: Sunindiya12 on February 14, 2020, 05:25:10 PM
Hi Yasmin,

I am the person Gin is referring to. I lost range of motion in my hips and was experiencing a lot of pain by the time I turned 30. My doctor sent me to Yale to their XLH center to consult with the experts, and they found a pediatric orthopedic surgeon who did a specialized hip surgery he had only done once before, where he basically cut through my femur to get to my hip joint and scraped out as much of the calcification as he could and then put screws in my femur to put it back together. It took me 1.5 years including physical therapy and two surgeries to recover from and I actually didn't regain full range of motion and still get some pain though it is much more bearable. If I had to do it over again, I would opt for a hip replacement even though I'd likely have to get 2-3 in my lifetime. However, if you are considering a hip replacement you need to see a surgeon who is familiar with XLH because they are way more complicated, between our bone structure/composition and the time it takes our bones to heal. A lot of the standard replacement joints don't work on us. I am now 38 and know I will need both hips replaced soon.

Good luck!