My story is unfortunately not unlike many with this diagnosis of adult hip dysplasia.
Growing up I had memories of pain in various parts of my body. Letters I had found in a recent clear out of my parents’ home noted significant back pain in high school. During volleyball season I was taken to a doctor at age 12 for knee pain and was told it was growing pains and overuse. It is a common assumption for adolescents now and then with this condition. I simply got used to the pain and thought it was all in my head, until I was 46 and could no longer walk due to a severe pinch in my groin.
Prior to that, an opportunity to diagnose me correctly was missed at age 43. I was told I had weak core. I took it upon myself to correct that and worked with a physical trainer. I did gain strength, but because I was athletic and unusually strong I was doing exercises not appropriate for my hips and I greatly damaged my right hip, the worst of the two hips. In March of 2012 I could no longer take the pain, which was present all-day and night, with immense nerve pain, particularly at bedtime and in the middle of the night.
My husband encouraged me to seek another opinion. I resisted not going right away saying “Why, so they can tell me I pulled a muscle?” After a consult with a physical therapist, who treated me for 2 months, things slightly improved. But I was advised if pain came back to see a reconstructive orthopedic surgeon specializing in hips.
In a matter of 2 minutes after bilateral x-rays I was told I had severe dysplasia in the right hip and mild to moderate in the left. The right was subluxed with tendon tears, cysts, and bone on bone arthritis. He asked how long I had been in pain, which I replied, ”Forever”. His statement afterward stuck with me for a long time, “Well, you should not have been walking past 27.”
The usual questions of “Were you casted or harnessed?” occurred. The reply being “No, and in fact I crawled out of my crib at 9 months.” Somehow I managed more athletics and activity than just walking throughout my life before my diagnosis.
This question of course stuck with me. To control pain through out my life I used massage therapy, cycling, good stretching, and most all strengthening regularly especially with a Pilates based program. Running was never something that felt good and it always exacerbated my pelvic pain.
A few years ago I became a self appointed advocate for helping others by developing strategies to manage this condition. My empathy for others runs deep. I wanted to make sure we could prevent this from happening to others much younger than myself, because the collateral damage, pain, and loss of income was something I never wanted to happen to another person. It’s a devastating diagnosis at any part of your life, but especially in adult years when you are in your prime and working to support your family. The fear of not being able to work because of the corrective surgeries and the time to rehabilitate is overwhelming. How can you do it all? It takes a tremendous support from others around you and for some that takes a toll on the family, especially with more complicated cases like mine. Education to the public and medical community is extremely important to help prevent this situation later in life.
In early 2015, when I already had my first hip replacement and tendon repair plus a spinal decompression, I had made a friend through the International Hip Dysplasia Institute. My story posted and she read it. She immediately had a connection with me, sharing many of the same issues. She was located in England and myself in the United States. We would Skype about once a week. She was preparing for a PAO and I was preparing for my second hip replacement. We would share strategies to cope physically and mentally. That friendship was a catalyst to develop a Facebook closed forum called Adult Hip Dysplasia Rehab Strategies.
When I initially fielded interest on another group I was advised that this would be unwise and that not everyone is the same with their rehabilitation. I did move forward despite that warning, but what I try to do is approach the management from many angles. It’s not just exercise advice. Our forum provides mental and emotional support for so many in the same predicament. It provides a service that is free. We encourage support and kindness and discourage any dialogue that may feel negative. I have never made any rules and I have never had to kick anyone out. It’s pretty amazing actually. I had belonged to several other sites that I had to leave because they became toxic.
Not everyone has a rough rehabilitation following surgeries, but as I said, I became complicated with that first incision. It was the first surgery in my life. Because I had adapted to the dysplasia, I had many compensatory muscle issues and dysfunctional muscle patterns. I was also diagnosed with spinal complications most likely stemming from a connective tissue problem. I now have a fusion and ongoing spinal issues, but I’m adapting. I also had another layer of diagnosis with Postural Orthostatic Tachycardia Syndrome, and dysautonmia, a malfunction of the nervous system following the spinal fusion that complicated my physical rehab. I know that I had these signs when I was very young. I could not stand still for very long as a child. I experienced frequent dizziness, brain fog, and feeling sick in school with no fever or obvious problem. I’m pretty sure I would be diagnosed with ADHD. But like everything else I conditioned that too, luckily.
It was a matter of re-conditioning my body from having so many surgeries close together that knocked everything out. It has been a long climb back up hill. I practice acceptance and gratitude, but I still fight like hell to get my life back. I continue to work on my gait issues and strength, and life is finally calming. I can smile and laugh once again. My gift of creativity has served me well.
About Linda:
Linda has been professionally illustrating since 1987 for numerous illustrating applications that include children’s books, editorial design, corporate design, and exhibit informational design. Her work has been recognized with awards and some of her clients include Wall Street Journal, Lincoln Park Zoo, Sterling Publishing, Simon and Schuster Publishing, Scholastic Books, and many others.
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