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Looking for others with hip fusion

LostPup

new member
Joined
Sep 5, 2019
Messages
2
Age
45
Country
United States United States
a little about me I had a staph infection at 7 years old that traveled from my ankle and settled in my hip. I had a spontaneous hip fusion. It seems this is a very rare thing as no orthopedics in my area have seen anything like me I am looking for individuals like myself that have fusions but also anyone that has had a replacement not that I am finding much in it besides a dr in Canada that has performed them. Highly interested in anyone with a fused hip surgical or spontaneous like mine.
More info I am now 45 and have horrible back pain if I am active if I pretty much be a couch potato it isn’t so bad.
 

Jamie

ADMINISTRATOR
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Mar 24, 2008
Messages
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Kansas
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Hi, @LostPup....welcome to BoneSmart! I'm so glad you found our forum and decided to join. I must admit that I've not heard of this happening to any of our BoneSmarties.

Are you hoping to find a surgeon here in the US who might be able to give you a hip replacement? At your young age I can see why you would want to have something done to be more mobile. It turns out you are practically my neighbor. Perhaps I can help you find a surgeon or two in the Kansas City area you could talk to. Who have you seen so far? Please tag me with your response so I see it quickly. To tag another member, you type the "at" sign (@) followed by their username with no space....like this.... @Jamie
 
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LostPup

LostPup

new member
Joined
Sep 5, 2019
Messages
2
Age
45
Country
United States United States
@Jamie I have been to apex orthopedics a couple in indendence and also a couple more I am not sure about replacement as there have been so few I can find that have been done with outcomes that did not look great. Apex I just seen the other day he is going to look around for me he suggested he was going to reach out to mayo. Found one dr in Canada that has done over 20 I emailed them. I just want my options I have put off what Shriners wanted to do at 18 which was break it again and redo the fusion in a more comfortable position told them no thanks and they released me. In 2010 I was once again offered this option and I refused again because as technology advances I don’t want to scare tissue to interfere with the possibility of a replacement and lets face it who wants hardware that is only going to change position of the hip that would still be non working and do nothing for the back pain.
 

Jamie

ADMINISTRATOR
Senior Administrator
Joined
Mar 24, 2008
Messages
58,131
Age
71
Location
Kansas
Gender
Female
Country
United States United States
If you haven't seen anyone at Dickson-Diveley, I would suggest that you make an appointment with Dr. Dan Gurba for a consultation. I have another contact at the Hospital for Special Surgery in New York City that I can check out if Dr. Gurba is not able to do a hip replacement. Your situation is way beyond my ability to suggest what options might be available to you. I believe there may be a $500 cost to have the initial consultation at HSS in New York and I don't know if that's covered by insurance. I don't know if that would be a problem for you or not. But I do know they have a special center there to deal with the most severe joint replacement cases, so assuming that there is no one here in Kansas City who can help you, they would be a good place to check into next.
 

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