Saturday, January 22, 2011

Bilateral Hip Dysplasia

So to start this blog off I want to do a little background explanation of myself.

I was born (normally, not breech) with Bilateral Hip Dysplasia that my pediatrician diagnosed when I was about 3 months old. If you are reading this, chances are you are completely aware of what hip dysplasia is, but if you stumbled across this let me explain. Basically, my hip sockets did not develop completely when I was born. So instead of the ball/head of my femur being in a nice cup-shaped socket, it's sitting in something that looks more like a shallow dish and over time the femur begins to rest on the labrum/cartilage and cause very bad pain as well as arthritis. So back to my Doctor: He ordered me to get Pavlik's Harness when I was 3 months old which kept my hips at right angles to my body to help form/shape my hip socket. I wore this for 6 months as a baby. When it came off, everyone thought I was fixed and my hips were never looked at again. Now, fast forward a few years.

All throughout my life I have been very active. I have played sports all my life, softball from around 5 years old until middle school, basketball from 10 years old or so until 8th grade, volleyball 7th grade-senior year and I rowed crew 7th grade-11th grade. All were very demanding sports that had me jumping and bouncing and jolting around and I never had much pain. Maybe a little sore after a lot of running, but I assumed it was because I had this hip problem since birth so I never thought much of it, we all assumed it was 'normal'. Fast forward again.

Now I'm in college and my hips are sore every once in a while, nothing out of the ordinary. Senior year I thought it would be a good idea to do some break dancing moves one night...everything seemed fine. The next morning I got out of bed and almost collapsed because my one leg (left leg) just gave out on me and I couldn't walk. I went to health services on campus and they sent me for x-rays...which didn't show anything. It was close to the end of first semester so over Christmas break my mom made an appointment with her orthopedic doctor (did I mention my mom has had two hip replacements, as well as had them both RE-done--yeah Hip Dysplasia is hereditary, usually in females). So I had an MRI and an arthrogram, which is when they insert a needle directly into the joint and inject dye to see the cartilage. This was the MOST painful think I think I have ever the numbing medication wasn't working. So after all of this I then met with her Doctor who basically said yes I have hip dysplasia and yes I will need replacements when I'm older, same as my mom. However, there is a guy in NYC who does reconstructive surgery and basically breaks the pelvis to create a new hip socket but he has only done about 10. So right away we said no thanks. We met with another doctor and he said the cartilage was broken and I can have surgery to fix it, but it could break in a week. We left the appointments depressed and with no answers.

I finished off senior year of college in pretty bad pain that would come and go. Went to Florida on Spring Break and had trouble walking around the park...etc.

Fast forward four years to 2010.

So here I am, planning a beautiful wedding with my soon to be husband and scared about the future of my hips. I want to enjoy my day, I don't want to limp down the aisle, I don't want to limp around Hawaii on our honeymoon. But I had no choice so after the wedding my #1 goal was to find a doctor and get some help. My fear was getting pregnant eventually...I got to the point where I couldn't carry groceries without being in the most excruciating pain of my life. Each step I took was more painful than the last, both hips, added weight was horrendous and standing for any amount of time over 5 minutes was dreadful. I would get stuff, my hip would give out, it would click, I would limp and just waddle all over. It almost felt like my hip was stuck sometimes and it took a while to get unstuck, standing from a sitting position I would get stiff and sitting from standing was also stiff. I NEVER took pain medication because I wanted to only use it when I needed it. I have taken it maybe 10 times in my life for hip pain. I took it last on our Honeymoon when I wanted to hike one of the volcanoes semi pain-free. So I really just fought through the pain. It was funny when my Mom, or Husband would ask if I hurt....well of course I hurt, every step hurts. Sometimes just worse than others.

Now we live in CT which is not where my Mom's Doctor is (I grew up in NY). I now have to basically close my eyes and pick an orthopedic surgeon to make an appointment with to see if he can help me. So I went to see Dr. John McCallum in Branford, CT. He wanted to see any previous MRIs and X-Rays that I have had done which I had sent over and they also took new X-Rays since it had been 4 years (since 2006) since my last visit for my hips. He took one look at my new X-Ray and said "you have bilateral acetabular hip dysplasia and I have a friend in Boston that takes care of patients with hips like yours". He didn't want to give me too much information regarding the procedure as he wasn't positive how it was done and didn't want to give me false information. He referred me to Dr. Michael Millis at the Children's Hospital in Boston who specializes in Young Adult Hips and he performs a procedure called Periacetabular Osteotomy (PAO). I ran home, made my appointment and began to Google PAO! What I found was less than exciting.

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1 comment:

  1. My brother has bilateral acetabular hip dysplasia and I wish you lived nearby because I wish I could start a live support group.. Seems easier to find people on the Internet who know about or have hip dysplasia than it is to find people in our hometown who have it.... I hope you are feeling well and I can really relate to the challenges... I'm very close to my brother and i try to be strong for him but it is unreal how hard it is to have to watch a loved one go through this and feel so bad that I can't fix it and make it go away.... If you would like to stay in touch my email is