I put the word uncertainty in the title of this post because that’s how I feel about this right scoped hip right now, walking by faith because there’s just no other way for me to walk anymore(or on many days, limp–ha ha, small hip joke there), and patience because I continue to have to learn this virtue daily, by the minute, many times by the second. When I asked God for certain things 3 years ago, one of them was to learn patience, I had no idea what he had in store as a way to teach that to me.
I’ve been continuing with my chiro doing ART weekly and seeing the trainer once a week (doing 2 other work outs at home that mirror what we do in our sessions each week). About 3 weeks ago my chiro released every muscle around my hips and it totally destabilized me and made me miserable, for about a week after that I got tight in all my muscles, but then regained the pelvic stability. I decided to take a week off of ART, and over that next week the horrible tightness decreased some and my pelvis kind of slid into place. I decided I was going to limit the ART around my pelvis for now, because my sacrum hasn’t been this aligned for 2 weeks straight for years, so that was a positive! Anyways, I was talking with my trainer today and I definitely have gained some stability in my upper back, shoulders, lumbar back, SI joint, and all over pelvis as compared to 2 months ago. The right hip however is a different story.
Despite the improvements in my body, my right hip continues to fight me. I literally have to consciously contract the muscles around it and hold them with every step I take all day long, otherwise the hip falls out of place in the socket, my pelvis rotates forward and my low back compensates and creates worse pain. It’s so frustrating that no matter how much I’ve tried strengthening over the past few months, it just doesn’t respond well to it. I’ve tried not strengthening it and I feel even worse. I still can’t walk distances, and by distances I mean if I tried to walk around a block or two I would flare my body up. I walk in/out of church, daycare, the public library weekly with my Pre-K son, in/out of chiro’s office, restaurants, etc…you get my point. I took my son to the park the other day because it was so beautiful. Being that my daughter was in school he wanted mommy to walk around with him as he played, so I walked to the swings and sat on a bench, then walked to the sandbox and sat at the bench, and on and on. Within an hour my hip muscles were angry and throbbing and I had to limp out of there in a lot of pain. This is where I’m confused. I’m almost 7 months post op, have been strengthening with some sort of rehab the whole time, and still am this limited. I just don’t get it.
I emailed my surgeon several weeks ago and last week his PA got back to me saying they wanted me to get a hip injection to see if that helped my pain and issues surrounding the right hip. I’m going to be frank, I remember getting my other hip injected 2 years ago and it’s not pleasant. You do get a numbing shot but then they pull out this huge needle and stick it in your groin area and shove it into the hip capsule (guided under live x-ray) and shoot in some lidocaine and steroid. Not exactly a fun experience. I had it set up for last Friday, but my daughter got sick Thursday afternoon, sent home from school so I cancelled the appointment Friday morning (thinking it was a sign from God that maybe I didn’t need the injection). Well, after the weekend and my day Tuesday I thought I better go ahead because we need to figure out what exactly is going on, so I was able to get it scheduled for next Thursday (then I see my surgeon a week after that so we can talk about if it made a difference or not). I constantly wonder can this truly be only muscular as suggested by the back specialist PT at OSU? Him and his colleague both said the issues I have still are not consistent with dysplasia; however before my other hip progressed the last few months before the surgery to correct the dysplasia I had on it, the instability and easily over loaded muscles are the symptoms I experienced on it as well. Then as it progressed I started getting the clunking and popping of it when I moved. I am set to see another PT at OSU, at the campus location, supposedly the one they send many patients to who are more complex. I go Monday, and am going to see if he will let me come consistently down to see him throughout the summer. My trainer has helped me significantly and I still would like to see him, hoping somehow the two can work together from a distance on me. My trainer knows exercise, and he knows how hard to push/not push me; however him and my chiro have limited experience with hip patients (especially a “complex” one like myself who everyone is stumped by), so I feel like I want to exhaust every option before starting to think about going under the knife again. I figure if this truly is just a muscle issue (which again I find it hard to believe) then someone who has rehabbed hundreds of hips would be a good person to have seeing and following me to help me either 1.fully recover or 2.decide I need the PAO on the right hip.
Some good news is that my primary doctor and I were worried about some things with me so she sent me to a rheumatologist to get checked out, but via blood work and exam he ruled out any autoimmune dysfunction. He did say he suspected EDS as well and wants me to continue with my plan to see a geneticist. I have an appointment in July, but want to make sure it’s covered by insurance first, as the medical bills pour in each month, I don’t think it’s worth pursuing the diagnosis if it’s not covered or very pricey. She also had me start something to help with the nerve pain and calm my nervous system which felt like it had been fried from living with so much pain for so long. It definitely has made a difference in the nerve pain and feeling that I was going to jump out of my skin from the pain. I was against medication for so long, but am glad now I started something, it really has made daily tasks more tolerable.
Despite the frustrations and constant pain and limitations I have daily I’ve been able to cope a bit better. When I feel myself getting down I start thinking of the blessings I have in life and repeat them over and over to myself and it does help. The few sunny warm days we’ve been having help to put me in a better mood. I try and take things a day at a time and pray when I am weak or when I start to worry about the future. Some of the things I worry about are first of all that we are going to Guatemala next month to visit my husband’s family and normally I would be super excited because I love them all and we haven’t been there in 2 years, but I am scared about the traveling. I can’t sit very long due to pain, and the plane rides are freaking me out due to this. I know I cannot walk the airports very far, so will need either a wheelchair or to ride in one of those cars. I get embarrassed about those things. I purposely have avoided shopping due to the same reason. I have like 3 pairs of shorts for summer (thanks to the 12 lbs I’ve gained in the past year) and don’t think I can physically walk around a store to find some I like, try them on, then stand in line to pay. So so frustrating! I’m also worried about work. I had to stop working last April, thought I would take this school year off then be good to go by fall. Well the time has come and the other OT’s have reached out to ask me if I am coming back in the fall and unless something significant happens for my hip to miraculously heal and start working, there’s no way I can do my job in 3 months. It breaks my heart because I love my job and I love my co-workers and the kids I worked with, but lately I’ve been thinking maybe it’s just not in the cards for me. Maybe my plan for what I want to do is just not God’s plan for me, at least right now. I’m sad but learning to accept that reality in many areas of life. I have been working online on a program to improve my Spanish so I can become more fluent with it. I’m hoping I can use it maybe in a job someday, or if I am able to volunteer somewhere where it would be useful, or if nothing else just to better communicate with my mother in law who doesn’t speak English. It gives me a purpose for now, something to look forward to and a goal to work towards that doesn’t involve my hips (which is something I need for mental health).
Anyways, those are my main worries for now, but like I said I am constantly giving them to God daily trusting that he has a plan for all of this, that he will get me through the trip to Guate without being too miserable, that if I am meant to return to the job I want it will happen and if not then it’s not meant to be, that he is growing my faith and trust in him, that he wants me to put my securities in him vs all the other things I’ve put them in my whole life. Thanks for reading….
My hip dysplasia/PAO story 
I am so sorry to hear of your struggles!! I am 5 1/2 weeks post RPAO surgery, and I am definitely starting to feel the stress and frustration aspect of it. I just want to be able to drive! I want to be able to put weight on my right side! Getting frustrated because my left side is starting to experience symptoms now too. I am hoping it is just compensation and that it will subside once I can weight bear on my right side, but I can’t help but think that it might be causing more long term damage. So many worries to handle and weigh through!
Hi Gina, thanks for commenting:) you are at a tough time in recovery, where you just want to get moving, I completely understand and remember that stage! The non-op hip takes a beating while bearing all the weight, but some of that pain will get better when you start weight bearing soon, most likely you didn’t do more damage, just feels that way:) good luck in your recovery!
Hi Julie – I had a RPAO on June 11, 2013 at the age of 32. My surgeon said it was one of the most severe corrections he’d ever done (I’d only had x-rays before so they didn’t realize how bad the degree was). So I was old for the surgery and they may not have operated if they’d known how severe it was. I went to bed one night with hip pain in December 2012 and it never stopped. I’d had some signs something was off prior, but I wasn’t your typical 16 year-old diagnosis. The doctors wondered how I made it so long without being super symptomatic.
Like you, I feel very alone. I try not to let it get the best of me, but I haven’t found one report on the internet of what’s been happening to me. Since surgery, the hamstring/other muscles behind my leg where they attach at my knee and where they made the bottom bone cut have been excessively painful. Nothing I’ve tried thus far has helped (PT, massage, swimming, etc.). It is extremely painful and near constant, and often extends up into the circle around the trunk of my leg. I fortunately don’t have that much pain in my hip joint anymore – mostly weakness and occasionally that sensation it’s “coming out.” I’m sure you know what that means!
Like you, I only see stories of people walking/running/living normally after this surgery and don’t know where to turn next. My doctor’s office hasn’t been helpful because they don’t seem to have encountered this. If I put my foot in one place, and then try and move my knee out all of about an inch, I get horrible pain through the hamstring and at the connections.
We may be the rarities (and not the kind of rare you want to be), but I just wanted to offer another voice and say that there are at least a few people out there who do not experience the recovery you so often read about on the internet. What I can offer is that in some ways, I am better at 11 months than I was at 7, and that is my hope for you. I have some days that aren’t as bad (not frequent but they do happen!). I get suckered into thinking things are improving for a day or two and then I’ll go back to where I was painwise at month four. I still have my disabled parking permit; I still can’t clean the cat box 🙂 While the pain is tough, wondering if it will ever improve is harder. I don’t let myself think about it too much but every now and then, when I see someone running, walking, biking, etc., I’ll tear up. I still coach my Little League team (been doing that for 16 years) but it’s so hard – most of the time I can’t actually DO anything. The coaches who are 12-15 years older than me move much better. My 92 year-old grandma moves better (no lie) 🙂 We are planning a road trip in July and I’m wondering how sitting that much will work.
I am thinking of you. I hope we are just on the “slower than everyone else” plan and turn a corner. I’ll keep up with your blog. Wishing you the best – Elizabeth
Hi Elizabeth, thanks so much for sharing your story. I’m so sorry to hear you are suffering still too. Nobody truly understands this journey unless having been on it. I really do hate to hear about others suffering but I think it’s helpful when we reach out to others. I always hope people can find this blog who are still suffering post surgeries and know they are not alone, because like you said that’s how we feel most of the time. I hope you continue to improve as well, I hear it can take up to 2 years post PAO in some people so fingers crossed:) If you are on FB look me up and friend request me, I have several “hip” buddies that we message each other with support and bounce ideas off of each other and it’s very helpful. I’m under Julie Barnes Gonzalez in Ohio. All the best to you, I hope we can keep contact.
Hi Julie – Sorry I missed your last reply. I will send you a friend request soon. I agree that it’s important to stay in touch with the few of us experiencing this, primarily to remind ourselves we are not alone and have to keep fighting (and to share ideas on how to fight!). I’m starting PT again next week and trying to get in with a different type of doc. I’ve waited far too long to pursue any help because no one can seem to point me in the right direction. I found out I have a bunch of fluid behind my knee and the muscles don’t seem to be sitting correctly behind my leg.
Thanks for being so open. I wish you all the best!
Elizabeth H.