Patient Stories
Allison
I have written out my story a few times for different purposes, and each time I change things around a bit, according to the purpose/audience. I include details here that may not seem relevant for a site dedicated to hip dysplasia for a few reasons. One, I want to show that my story is not typical for someone with hip dysplasia. Two, I’m very curious to know if there is anyone else out there with similar problems. Many of my doctors have thought my problems are probably all related somehow, but no one knows how. I jokingly say that I should add “confusing doctors” to my list of hobbies. Three, I don’t feel like I can share my story fully without these details, and finally and most importantly, I want to give hope to those who may have a similar story to mine; to those who might feel hopeless at times, to show that you can overcome these things.
While I was not diagnosed with hip dysplasia from birth (though they did check) I had many other problems when I was born, or shortly thereafter. When I was a few weeks old, I stopped eating, and had to be tube fed for awhile. No one knows what caused this, as all the typical reasons were ruled out. I did finally start eating on my own again. I was also very far behind on my gross motor skills, and did not walk until I was about 2 ½. My fine motor skills were also behind. My parents were told that because I was so far behind physically, that I would likely have cognitive delays also. I do not. In elementary school, I had an IEP (Individualized Education Plan) for physical reasons, and I was also in the gifted education program. I graduated from high school with a 4.1 GPA, and graduated college summa cum laude.
When I was five, I had eye muscle surgery. About that same time, I was also placed on growth hormone. I did not have growth hormone deficiency, but they could find no reason for my short stature (I am 4’10”, rounded up, as an adult now) and I was part of a research group to determine if growth hormone therapy was effective for those not diagnosed with this deficiency.
When I was nine, I was diagnosed with bilateral hip dysplasia, and they discovered this while looking for something unrelated. I never had any pain. Though I did walk with an altered gait, they did not think this was due to the hip dysplasia, and my parents were told surgery would not fix my gait.
On January 5, 1993, I had bilateral Pemberton osteotomies. I had the privilege of being under the care of Dr. Perry Schoenecker, who is on the Medical Advisory Board for the International Hip Dysplasia Institute (as of October 2014), which is how I discovered this site. As my dad tells it, A doctor in Chicago told Dr. Schoenecker he would not be able to perform the surgery, but the surgery was a complete success.
For the next six weeks, I was in a spica cast. Mine went from my ankles, up both legs, to the bottom of my rib cage, and both legs were nearly straight, and in a V shape. After the initial four weeks, under general anesthesia, the top half of the cast was removed, and was then secured back on with ace bandages. I don’t remember the details, but I believe this was so physical therapy could begin. I was in a brace after that, though I don’t remember how long I was in the brace.
I remember being out of school the whole time, and home-bound education was arranged. I actually liked this part, because I was ahead academically and could complete the assignments at my own speed. When I returned to school. I used a wheelchair, though I could walk short distances with a walker. Eventually, I was walking without any assistive devices, but, as was predicted, I still walked with an altered gait. I also had “serial casting” for tight heel cords at some point after the hip surgery, and I was diagnosed with osteoporosis at age 18.
I must pause here a bit to say that I cannot fully share my story without sharing my Christian faith. Throughout my life, God has spoken to me through music, and He gave me a special song, “Cares Chorus” to help me get through my hip surgery. It was on a “Psalty the Singing Song Book” tape that I had been listening to for years, but it took on special meaning during my ordeal with the surgery. The song is based on I Peter 5:7, which is the verse I quoted at the beginning. I have seen God work in my life in so many ways.
While I wish I could say my hip story ends here, it does not. In January of 2010, I started having pain in my left hip. The pain started out minor, and I tried to ignore it. Due to my earlier problems, I wanted to pretend it wasn’t happening. It soon developed to the point where I couldn’t ignore it. On May 3, 2011, at age 27, I was diagnosed with severe arthritis of the left hip. I was told that this was not uncommon for people who had the surgery I did at age nine. However, due to my many medical problems, including the altered gait that was not fixed with the surgery or serial casing, no one knows for sure why I developed osteoarthritis so early. I do not want anyone thinking that this is in the future for their child (or them) due to my experience. I likely have an undiagnosed congenital condition that ties all of my various problems together, but no one knows for sure. I was always one or two criterion away from being officially diagnosed with any specific condition. I have joked that I could be on “Mystery Diagnosis,” save for two things. One, my problems are not dramatic enough, and two, I don’t have a diagnosis.
After I was diagnosed with severe osteoarthritis, the pain continued to increase. While I did not want to have hip replacement surgery as such a young age, I knew it would be in my future. I was told that “I’d know” when it was time for surgery. I was told the pain would get to be too bad. For me, though, the decision had more to do with the mental side of things, rather than physical pain. While I did have pain, and I did have cortisone injections, which helped, I was not constantly taking pain medications. For me, the decision came down to a few things. I was tired of feeling like a tortoise amongst the hares when I walked. I was tired of not trying on shoes in stores, because I was afraid I wouldn’t be able to tie my shoe again. I had to quit working in the church nursery. I was tired of thinking about the surgery constantly, knowing it was looming at some point in the future. It was time. Pain wise, I could have endured. But mentally, I knew it was time. Looking back now, I’m go glad I made the decision when I did.
On February 13, 2013, at age 29, I had left hip replacement surgery. Once again, I had privilege of being under the care of one of the members of the Medical Advisory Board for the International Hip Dysplasia Institute (as of October 2014), John Clohisy, MD. My recovery was nothing short of remarkable, with absolutely no setbacks. Yes, there were some difficult nights, but the pain was better almost instantly after surgery. After leaving the hospital, I took a non-narcotic pain medication for a couple of weeks, but it was mostly to help me fall asleep. Within 8 weeks, I was walking unassisted and cleared to return to work, and all precautions/limitations were dropped at 12 weeks. Though I was never one for walking, I had always had this dream of completing (not competing, exactly) in a 5K. The hip replacement surgery was the motivation I needed to actually start to train, and in April 2014, one year and two months after my surgery, I completed the Color Run 5K. I may have walked the entire thing, and it may have taken me over an hour, but I did it.
With the hip replacement surgery, God once again brought the song “Cares Chorus” to mind, and he also comforted me with Laura Story’s song “Blessings.” I cannot end this without going back to my faith in God, who has been my Rock throughout my life. God can bring about blessing through my difficult circumstances. I may never fully see those blessings here on earth, though God has allowed me to see a glimpse of some of those blessings. The same God who knew then, and knows now, all the intricate parts of my body, the same God who knows exactly why I had those various medical problems, is the Lord of my life. I don’t know what God has in store for me in the future but I do know one thing. My God is a great God. No matter what, I know He’s in control, and will give me the strength I need to step through life as He has each moment in my past. The same God who made the universe cares about me, and can bring blessings from trials.
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“Cares Chorus,” Kelly Willard, Copyright 1978, Maranatha Praise, Inc.
“Blessings,” Laura Story, Copyright 2011, New Spring, a division of Brentwood-Bensor Music Publishing
