So. You’ve just been diagnosed with hip dysplasia. Now what?

So. You’ve just been diagnosed with hip dysplasia. Now what?

A blog post by Nancy Muir

The diagnosis of hip dysplasia can elicit a gamut of emotions. There may be feelings of shock or disbelief. There may be confusion, frustration, anger, or fear. There may be relief or validation. And maybe even hope. These emotions may be experienced singularly, or they may hit in a variable, collective flood.

When it comes down to it, there are two things you need to know:

  1. Each person with hip dysplasia experiences it in their own way. This is YOUR journey, and there is no right or wrong way for it to be experienced.
  2. You’re not alone. There are 1000s of other adolescents and adults out there who are going through their own hip dysplasia journeys. Whether you choose to seek out this community or not, know that there are others out there who “get it.”

A hip dysplasia diagnosis, the treatment options, surge of emotions, and terminology can all be overwhelming and very frightening.

So where does someone who was just diagnosed with hip dysplasia even begin?

  1. First, take a deep breath and try to relax. It’s going to be a long journey, but you can do this.
  2. If you haven’t already, find a surgeon who specializes in hip preservation surgeries. He or she can help you learn more about your individual hip structure and function, can order additional images and tests such as MRIs, CT scans, and X-rays, and can work with you to determine what your treatment options are, and which one might be the best for you. There are some resources for finding surgeons who specialize in hip preservation and lists of questions you can ask during your consultation on the IHDI website. It is important to find a surgeon who you trust and who works with you to make sure that you are comfortable with your treatment decisions.
  3. Regardless of whether you decide to manage your hip dysplasia conservatively or surgically, talk to your surgeon or primary care physician about whether physical therapy would be beneficial for you. A physical therapist who is knowledgeable in treating complex hip disorders can help with conservative or pre-operative symptom management through strengthening, pain management techniques, and movement re-education. Establishing care with a physical therapist will also be important if you pursue surgery and he or she can work with you to help you return to your home, work, family, and sports activities.
  4. How are you doing mentally and emotionally? Many patients report struggling with mental health concerns around their hip dysplasia diagnosis. Many experience anxiety, depression, difficulty sleeping, feelings of anger or frustration, loss of identity and loneliness. If you are struggling with any of these, consider seeking a support group, formal mental health support from a licensed therapist, or even discussing medical treatment with your surgeon or primary care physician. Mental health has been associated with long-term outcomes in some patients following hip preservation surgery, so identifying these issues and investing in support for them early may improve your outcomes.
  5. Consider seeking support from other hip dysplasia patients. Many adolescent and adult hip dysplasia patients express difficulty sharing their thoughts and concerns about their hip dysplasia diagnosis with friends and families. Many patients report that they benefit from peer support either in the form of mentorship from another hip dysplasia patient or from an online or in-person support group. If you are interested in peer support, search for online groups or ask your surgeon if he or she is aware of any local patient support groups or former patients who might be willing to provide some mentorship through this process. Keep in mind that every patient with hip dysplasia is different and each individual journey is unique. Try not to compare yourself to others. Trust your gut, trust your body, and trust your medical providers when it comes to your individual hip dysplasia journey. Don’t feel that what is right for other patients has to be right for you but do know that there are many wonderful and knowledgeable patients out there who want to support you if you need it.
  6. Finally, take a deep breath and try to relax. It’s going to be a long journey. But you CAN do this.