Hip Update

I hope everyone had a wonderful Christmas and a very Happy New Year!  My hope is that 2014 brings healing, health, and happiness to all of us!

I have spent the past month researching hip dysplasia, the specialists who treat it in the US, and the periacetabular osteotomy and femoral osteotomy surgery.  I’ve joined several support groups, and have talked with several patients who’ve had the PAO surgery.  I have come to terms with my diagnosis due to the research that I’ve done, the pain in my hip that keeps alerting me that something is not right, and by listening to my instincts.  At first I was scared and feeling very fearful – I just had a major surgery…can I make it through another one?  What if this surgery doesn’t fix my issues?  I didn’t want to put my family through another big surgery.  Then I just felt mad – mad that they didn’t find this sooner, mad that I’ve been feeling like something was wrong for the past 10 years and was dismissed and told everything was “normal.”  There was one book on Amazon about Hip Dysplasia in young adults, and this, along with the support groups, has become a great resource for me.

For a while, I was in denial about the whole thing – I’ll just keep doing more yoga and stretching…that will fix my problem, right?

The more I researched and read, the more I found about how hip dysplasia is a mechanical issues and needs a mechanical solution.  The joint is deformed and, unless you fix the joint, it will continue to get worse until you have full-blown osteoarthritis, walk with a limp, and require a total hip replacement.

From the support groups, I learned that there were several females who were told their labrum was torn, had a scope, and a year later, it re-tore because the underlying issue (hip dysplasia) was not fixed.  One woman had 3 hip scope surgeries before she was diagnosed with hip dysplasia!  I also spoke with women who had pelvic pain, in addition to their hip pain, before the surgery, and both pains improved after surgery.   Hearing this gave me such hope!  I am praying this is the solution for all of my issues!

I got my final CT scan report, and it made things a little easier to accept, seeing the results in black and white:

Joints: Degenerative changes of the symphysis pubis and bilateral SI joints.

Acetabular version, adjusting for pelvic tilt 2.5 to the left

At 1:00 (normal 5): 49

At 2:00 (normal 10): 46

At 3:00 (normal 15): 40

Femoral version (normal 5-15): -14

After reading this report, I sat my little deformed, I mean “special,” hip down and accepted the diagnosis more.  It explains my SI joint pain, pelvic pain, left hip pain, and occasional left knee pain. 

Many women on the support group told me that their hip angles and acetabular/femoral version was not accessed until much later.  I am now so grateful I got a diagnosis when I did, and that my doctor at UTSW made sure to do a CT Scan and perform the appropriate hip protocol to assess for dysplasia.  <Part of me wants to go back and throw the report in the face of the PMR doc who told me my hip/pelvic pain was all “anxiety” and that I just needed to be put on anti-anxiety and anti-depressant medications…but that is not the nice way to handle these things, I suppose, but when I think about it, it makes me smile a little.>  🙂

You body will tell you when something is not right, and mine definitely is.  I decided to sit on the floor to wrap some Christmas presents a few weeks ago, and my hips were sore and ached for a whole week!  Wild!  I didn’t even do strenuous exercise or anything! I was just sitting!! Not normal.

After doing tons of research, asking around on support groups, and finding who was in-network with insurance, I have a list of potential surgeons who do PAO surgery.  There are a limited number of orthopedic surgeons who are skilled in this area, and all but one are out of state.  I’ve sent off imaging to Washington, Michigan, Chicago, St. Louis, and Dallas.  The whole process is a little overwhelming, but I am trusting that my instincts will guide me in choosing the right person for the job. 

I feel like we will soon be off for another medical sabbatical again.  We are traveling to Houston at the end of the month for more scans at MDACC.  They are doing an MRI of my abdomen, to check for post-surgical changes, as well as an ultrasound of that spot I found under the right side of my ribs.  After that, we fly to St. Louis for an appointment with a specialist there.  He does around 10 PAOs per week, and young adult hip dysplasia is his specialty.  On Feb 5, I am going with my Dad to Dallas to meet a surgeon at UTSW.  He mainly works at Texas Scottish Rite Hospital for Children as a pediatric surgeon, but once a month he does a PAO on an adult.  I know both of these surgeons have around a 2-3 month wait for surgery.  In the meantime, I hope to hear back from the other surgeons regarding their review of the imaging CDs that I sent out, and I will keep doing more research, checking out the support groups, and work on preparing my mind, body, and spirit for this journey.  I have found that a rice heating pad helps me manage my pain during the day and is essential for being able to sleep at night.  It’s a journey, but I am no longer as fearful as I was before, which is a start.  Thanks so much for your prayers and support.  Have a wonderful new year!

 

 

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