Question
This is great that I came across this site and you. My dilemma is that I am 20 years old and I've had hip dysplasia from birth. I have had horrible luck with doctors (minus 1) and just getting more messed up than I was before, you know? I had every sign of hip dysplasia and it was obvious to everyone SOMETHING was off (walked on my toes, etc.) Well, it went undiagnosed until it got so bad I practically made them take x-rays to see what was wrong. Well, by this time, I was already 14 and my hip was in horrible condition. I had 6 hip surgeries from the time I was 14 to about 17, 18 at the latest. These include pelvic osteotamies and femoral osteotamies. My first 4 surgeries were done with the same orthopedic surgeon. I guess he was just surgery happy or something because nothing he did, did anything at all. I missed 2 semesters of high school, gained 60 lbs, was just in a much worse place than I ever was to begin with!... anyway, this isn't supposed to be a rant but there are other medical problems (I can elaborate more on this if you wish) that have come up recently and it's just really frustrating  So I'll get to the point, well after those 4 surgeries, I got a new doctor and had this procedure done that was brand new at the time about 3 years ago, I was going to be the first one in Colorado to get it done so I decided to go for it since I didn't have any other options available to me that I was aware of. He cut out the entire hip socket and rotated it and put it back in, not sure I remember what else was involved. Well, it made a lot more progress than the first doctor did, I was still in pain though and had arthritis because the condition went untreated/undiagnosed for so long that it wore away all the cartilage in a quarter sized area in my hip socket. He did one more surgery to kind of resurface the ball of my hip some and over the last few years, I have been in constantly increasing pain. I had a slip and fall sept. 2006 and a car accident in December 2007 that have shot my pain through the roof. So over the last few years I've been on so many different medications it was ridiculous. It got to the point where they had me on 5 20 mg oxycontins a day, 5 10 mg methadones a day, ambien cr, etc. etc. I also got diagnosed with a form of muscular dystrophy (Charcot-marie tooth disease) last year sometime around September. Well things keep getting worse and worse for me medically in numerous ways and all the doctors I have seen say that no one will touch me to do a hip replacement because I'm so young that it won't last, and that it could affect my reproductive system, that because I've had 6 hip surgeries and the scar tissue and everything will make it hard enough just for the first hip replacement and things like that. What do you think? I'm a college student doing well academically but man, things just keep getting worse and worse physically and I just don't know what to do anymore, I don't want to depend on crazy doses of narcotics, legal marijuana, etc. my whole life just to be able to make it through a class! :(

Answer
Cassandra

You've been through so much in the past few years and I can't even imagine the pain you are in.

First of all, you are on a lot of medications and if your pain warrants so many narcotic meds, you need to find out what your options are.  It is true that hip replacements in younger people do not last as long because we are more active, but in your case, I don't know that your other options are going to be as good as a replacement.

You must get to a teaching hospital in your area.  You need a doctor who knows what they are doing, because if more mistakes are made on you, your surgery options will be less than they are now.  So find a teaching hospital and get to to the head of the orthopedic department and see if you can get a consult.  I don't know what your insurance will cover, but if you can get to the Hospital of Special Surgery or the Hospital of Bone and Joint Disease in New York City, those are your best options for a good doctor.  Seeing that you have other underlying medical problems lead me to believe that it might be possible for you to get an "out of network" doctor from your insurance.  The other hospital which is very good is the Anderson Clinic in Arlington Virginia.  I went there for one of my difficult surgeries and they are also the top of the heap for bone disease.

Because you have underlying problems and are on narcotic pain meds already, they may need to wean you off of them before surgery.  You're on a lot of meds and after awhile as you know, a person can develop problems from those types of medications.  They dont' necessarily get addicted because studies prove that when narcotics are taken for pain control there is less of a problem of addiction.

So here's what you need to do.

1. Find out what your insurance covers insofar as looking outside Colorado for doctors
2. If the insurance does not cover out of network doctors, look for a teaching hospital in Colorado and get in touch with their orthopedic department for a referral
3. See of one of your current doctors will refer you out to a specialist
4. If the doctor won't do that find out from your current doctor how many patients they he or she has worked on with your problems.  If they do not have experience with patients like yourself, demand a referral out to a more competent doctor who has experience with your type of case.  If they won't refer you out or the insurance company gives you an argument, go to your TV stations or newspapers and complain to them. Sometimes if publicity is bad, the insurance company changes it's decision.

I wish you the best of luck, you are too young to have doctors write you off, so look at your options.

Sharon Davis