Is there anyone with XLH who has received a BHR?

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I am a 42 year old female with osteoarthritis in my left hip and considering a BHR.  I am wondering if there is anyone who has XLH (x-linked hypophosphatemia) who has had this surgery.  This is a genetic disorder that is sometimes called Vitamin D resistent rickets.  People with this disorder are not able to absorb phosphorus through their diet - it leaks out through the kidneys - and often have rickets or osteomalacia (adult rickets).  The bones usually have normal density but are soft and slower to heal. My endocrinologist has done tests (bone density and bloodwork) and given the OK for surgery.  My ortho says that there is a 10% chance that the surgery will be changed to a THR when he gets in there and takes a look at the condition of the bone.

Also,  have a skin allergy to nickel and to Vicryl sutures.  I already have 2 metal staples in each leg from leg straightening surgery which was done more than 25 years ago and they have never caused a problem, but I don't know if they contain any nickel.  Any thoughts on that?

This is such a hard decision.  Like everyone else, I am tired of the pain and ready for a permanent solution.  Any comments would be appreciated.

[Pat Walter]

Hi
Welcome to Hip Talk.

I am sorry, but I don't know anything about the particular problem you described.  I wish I knew more, but I am not medically trained.

The one thing I can say for sure is when you have unusual problems, it is always a good idea to use a surgeon with a lot of experience.  What surgeon are you working with?

If you still have some nagging questions or that inner voice is saying - I'm not sure, I would contact a few of the really great hip resurfacing surgeons.  The wonderful part is - they will talk to you free if you send them an email with your story and attach your x-rays in a digital format as a jpg.  If you don't have your x-rays in digital format, you can take digita photos of them by holding them up to a window during the day where the sun is not directly shining in.

Dr. Bose of India, Dr. De Smet of Belgium, Dr. Gross of SC and Dr. Rubinstein are a few of the surgeons providing email consultations.  http://www.surfacehippy.info/listofdoctors.php 

I definitely would want some extra input to help my decision if I were in your case.  I was an older woman at 61 and had a loss of bone density.  So I wanted a really experienced doctor.  I choose Dr. De Smet of Belgium who has done over 3000 hip resurfacings and over 3000 THRs. He has seen it all and done it all, although he will even tell you there are always surprises and difficult cases.

You are very young and if a BHR or THR lasts 15 - 20 years - you are looking at a possible revision in your life.  I liked the thought of starting with the BHR since it is bone conserving. 

The BHR and MOM thrs are the same metal - a cobalt/chrome mixture. I have posted some new info about metal allergies here  http://www.surfacehippy.info/metalallergyinformation.php

I hope that helps a little.  I just encourage people to ask the pros if you have questions.  The most wonderful part of it all is - the pros in this case are free!!!!  All of the doctors I listed are very compasionate and caring individuals.

Pat