Patient Stories
Juliet
I’m 41, with recent onset congenital bilateral hip dysplasia. This is what happened:
On June 30, 2010, I was a leasing agent with a property management company and we were having a busy day doing move-ins and move-outs. Around 6:00 PM I developed a severe pain in my right hip, to the point where I was limping and dragging my right leg behind me. It was a hot day; and I was wearing sandals, to which my boss and I attributed the right hip pain. I wore shoes with better support after and that seemed to be that. Everything was fine until…
In February and March 2011, I had a different job working as an office administrator. I took the bus to work and while the walk to the bus was okay, the walk from the bus into work (8 blocks) was painful and most of the time I limped. After sitting at my desk for an hour or so, the pain disappeared. It was only in the mornings, and by the end of March had stopped. Everything was fine until…
In Spring 2012, my routine gardening tasks became excruciatingly painful on my right hip/knee/leg and often I couldn’t walk afterwards. Around this time, regular walking started including a stabbing pain inside my right hip joint. There was no rhyme or reason. Some days it was every 100 steps, some days every 50, other days every 3 or 4. Always when I let my guard down and forgot about it. I made an appointment with my GP that May.
Another thing that used to happen to me is I would fall down, usually one or twice a year, and skin my knees like you do when you are a kid. Yes I was sober 😉 I always thought I had tripped, or stepped too far on the outer edge of my foot, wasn’t paying attention, etc. The last time I fell was in August 2012.
My GP was reluctant at first, because of course when I went to see her I wasn’t limping. After some x-rays that showed nothing, I kept insisting the pain was in the joint and she agreed to send me to see a orthopedic surgeon, and schedule me for an MRI in January 2013. I went for the MRI, but missed getting a fluoroscopy injection, so I needed another MRI with the injection, which took place in June 2013.
The first surgeon I saw diagnosed right hip dysplasia at the end of June 2013, and said the left hip was fine. I cried. I didn’t ask all the questions I should have, I was unhappy about living with the pain. Imagine if someone told you you were going to be stabbed in the hip joint several times today, but you have no idea when – yuck – it made physical movement unappealing. Once I turned slightly to the right, and it hurt so much I couldn’t breathe, I saw white stars popping in front of my vision. The other time that happened to me (couldn’t breathe, white stars) was when I happened to be standing next to the fire alarm in my building years ago, when it was being tested. How could anyone not be sad about this? The surgeon took my reaction very personally, and said, unprofessionally, “Well, what do you want me to do about it? Perform a surgery and make it all better?” I cried harder. But yes, I did kind of want that 🙂 I didn’t know how the condition is monitored over time, how is pain managed, should I take supplements like glucosamine sulfate?
In July 2013, there were two days in a row that I couldn’t put weight on my right hip/leg. Enough was enough. I went and bought a cane. And, then, with the cane, I went through a grieving process with all my friends and family that it was unfair, I was so young, reminding others of their own mortality, etc. It was more for them than me. Their sad faces were hard to see. They didn’t know how to be around me. I got treated like a frail grandma. It’s just a cane, I’m not going to die of this. The cane has greatly, greatly lessened the pain over time in my right hip. I love my cane! I can go so much faster, too! Tripping is a hazard at first, and if you are using a cane you will do everything one-handed.
In January 2014 my left hip started hurting in the same way the right one did. I knew my left hip was the same as the right, even though the surgeon had said it wasn’t. I just KNEW. I made it to work and then was sent home because I was a wreck. My co-worker wanted to take me to the hospital. My other co-worker told me I had ‘shock spots’ around my eyes. I went home and cried on and off for the rest of the day.
After asking repeatedly for 5 months for my GP to refer me to another surgeon for a second opinion (she thought the first guy was fine, but I wanted to be sure) I finally saw him a few days ago. He confirmed the bilateral hip dysplasia. He did something the first surgeon failed to do: offer me hope.
With the right support, I can put the cane in the closet for a few more years AND get around relatively pain-free. I will need a hip replacement but not for around 8 years. He gave me some pain medication I am wary of, as my partner took them and said they are hard on the body, so I want more information first. I will have a referral to the Arthritis Society in my city and I can speak to them about medication and side effects. Other ways to live with pain and support joint health the best I can. Platelet Rich Plasma was also brought up, but it tends to be something for sports injuries. And possibly the acetabulum can be rotated so the femoral ball fits better. I am very glad I got a second opinion.
This is the hand I was dealt, so it is the one I have to play. I’m still in the grieving process. I do my best to be brave. I had free and easy mobility until two years ago. My physical activities have changed. I watch my friend Paula running along the giant driftwood logs that pile up on the beach with something more than envy: I used to be able to do that! We did that together! It’s been coming my whole life; biology is destiny in this case.
I don’t have a lot of people to talk to about this, pretty much all anyone wants to hear is that it is getting better. But I don’t know that it will get better before it gets worse. Thank you for reading this, and to this forum for allowing me to share my story.
