To cut again or not to cut again….the million dollar question

So I was 1 year post PAO for the left hip on May 17th. It was a busy weekend, spent Saturday the 17th serving at the Children’s Home (as we do the third Saturday of every month) then attending church, then Sunday was our 12 year wedding anniversary. We didn’t do anything extravagant (went to a movie, then to the church where we got married and said some prayers together); however given that last year on our 11th anniversary I was 1 day post op and laying in a hospital bed with a broken pelvis, IV’s, catheter, wound drain, and an epidural and completely doped up on strong pain meds I would say this anniversary was a major step up!

It’s hard to believe a year has gone by, it seemed like it would take forever for that to come. My expectations were definitely higher for this point in the recovery then they should have been. People (including my surgeon at my follow up visit last week–more on that later) ask me how my left hip is now, and honestly the joint itself feels stable and pretty good. The muscles around it still have lots of issues though, but I’ve been told that my back on that side is still compensating and tightening to hold stable the right side of the pelvis since the glutes on that sides are not doing their job correctly still. Once the back on the left tightens to stabilize the right side of the pelvis that ililum upslips and then the other muscles around the left hip compensate…the flexors get elongated and pulled, the hamstrings feel so tight like they are going to snap, and everything just gets so tight. I am constantly massaging and using a tennis ball and my skyball and my MELT roller on my muscles on/off all day long so I don’t walk all day with my pelvis upslipped and uneven causing more issues.

So two weeks ago I went down to Ohio State with my dad driving me (he’s my Columbus road trip buddy now) and saw another of Dr. Ellis’s PT’s that he has spoken highly of to me on several occasions. The reason I didn’t see him, but saw the other two in the past is that the location the other two were at was more convenient for me; however I just wanted to see the best of his best and have him be my only PT/rehab provider because at this point as the title of this post says, I am considering a PAO on the right side and want to exhaust every option possible before going down that road again. Anyways, I saw him and he eval’d me and told me basically what I said before, my glutes are very weak (glute med and glute min as well as my deep hip rotators), and they are not stabilizing my pelvis so when I walk my hip adducts and internally rotates and the hip jams up into the socket. When he put my hip in flexion and internal rotation I got that sharp pain again like pre-scope and freaked out because I really am hoping my labrum is not starting to re-tear again. He said I needed to take out all exercises I was doing and start from scratch (which isn’t far off from what I was doing anyways). He gave me 6 basic glute and hip rotator exercises and told me to do them daily unless I walk more then usual, in which case I can skip them then. He said in 4-6 weeks I should notice a difference and be ready to move on to the next phase of strengthening, and that if I wasn’t then it was likely a joint problem I was dealing with. If I am ready to move on, but then hit a road block at any point in the recovery that too would point to a joint problem. He agreed to be my PT, but said I only needed to come down every 2-3 weeks to see him, as progressing me any quicker then that would set me back. I asked him why my glutes were such a mess after 7 months of trying to strengthen them and he said that either 1. there was still a joint problem producing inflammation that was causing the glutes not to activate properly OR 2. my PT pushed me too hard (which she did multiple times) and that overloaded my glutes shutting them down in a vicious pain cycle. He said that he’s seen it happen a number of times, and that most of the time just resting a few weeks will allow the glutes to “come back” but occasionally that does not happen, and the solution is to start back at square one and begin to re-train them again. Less is More….that is the new motto of many surgeons and PT’s in this recovery.

Anyways, I had to return a week and a half later to see Dr. Ellis and had the PT already on the schedule for that date (with the research going on all the time they like you to get checked each time by PT before seeing the surgeon). I saw my PT again and we talked about my hip injection that I had a few days after I had seen him the first time. I purposely agitated my hip that morning and after the injection the pain/ache and burning I get at the back of the hip was gone immediately after the injection. The muscles back there felt weak and strained but the pain was gone. He reassessed me (although he didn’t expect to see any changes yet) and I was the same. We went through the exercises then he went to talk with Dr. Ellis before I went to see him. We spent about a little over 1/2 hour with him (my husband and I) and he ranged my hip all around and said it felt very loose again to him. I told him that I felt instability deep within the joint which was causing my whole pelvis to be “off”. When he asked how the left hip was, I said the joint felt good, but the muscles were a mess apparently due to the right hip instability so it was hard to know if there were any residual muscle issues solely due to the surgeries on that hip. He said my PT was really good at looking at things and had the brain of a mix between a surgeon and PT and that with the plan the PT set out, he agreed I would know within a month whether all these issues would likely clear up vs. proceeding with a PAO on the right. If it is needed we will do it likely end of September. He asked me to come see him at the very end of July before he took a few weeks off and said by that time I will know what the right choice is.

So now I’ve been strengthening for 2 weeks almost daily and I do notice that my right hip feels more supported, but the muscles in my back are still tight. I release those muscles then the back of the hip joint hurts. It’s a constant battle all day long. I will say I am doing more though. I was able to meet my daughters class at the park today (with my son in tow) and stay 2 hours walking and standing for good portions of time with tolerable pain and tightness. Upon arriving home I needed to lay down a good hour to calm things, but a few weeks ago this would have been impossible to do at all, so I’ll call that a victory. Yesterday on Memorial Day we had family and friends over and I was cooking, setting up the kiddie pool and water play stuff and just up/down a lot and felt pain and tightness at the end of the day, but not as bad as I expected….another victory. I’ll take it, I considered it a gift from God, as there haven’t been to many days in the last 3 years where I enjoyed myself without constant misery and pain every second of the day where it just completely consumed me. I hope these are good signs that maybe I will respond well to this and not need the PAO, although I have tried the approach where I go slowly several times now and every time someone has me try and take things to the next step of strengthening I flare and start back at square 1 again, so only time will tell.

It appears due to all this uncertainty I will not be returning to my job in the fall. It breaks my heart, but it’s out of my control. I know God has a plan in all of this for my future and it’s just not something I can obsess over at the moment because all it will do is bring me stress and misery and I’m trying the positive and putting it all in God’s hand approach now. I’ve changed so much in this journey. I was looking around my first floor the other day, dishes were in the sink, children’s books strewn across the coffee table in stacks, shoes in random places, crumbs on the kitchen floor, and I thought wow, I would have been stressed beyond belief and in a cleaning frenzy a few years ago about all this, but that day I knew if I did my cleaning frenzy, that would have put me on the couch a couple of hours and I would rather spend what available use I have of my body before it reaches that point on my kids and hanging out with them. Priorities have changed, to-do lists consist of 1-2 things per day usually vs 7-8 things, and if things don’t get done there’s always tomorrow. My perfectionistic, OCD, ADHD tendencies have slowly melted away and the important things have become more clear–relationships and time with God, family, friends, and others, because once I leave this earth someday no one will really care how clean my house is or if I have weeds growing in my flower beds. Sometimes the fear tries to creep in…about our upcoming trip, about possibly having to go through another pelvis breaking surgery, about my career, about the future in general, but the verse “Be still and know I am God” frequently pops in my head and I have to at times repeat that over and over and I do get a calming from it. Day by day with small victories I celebrate, with set backs I do cry some, but I continue to look for and find purpose in it all. Thanks for reading, I’ll post in a few weeks after my next PT visit.

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7 thoughts on “To cut again or not to cut again….the million dollar question

  1. I’m always glad to read updates from you, but sad they are not happier ones. This is so hard and there are so many unknowns and hard decisions. I relate a little bit in that I am nowhere near where I thought I would be 6 months post surgery. I am still limping. Yes, it does lessen over time, but it’s still there. However, I don’t experience the pain like you do. I don’t know what to do.

    I also relate to the priorities. Things that used to matter just don’t any more, because of my physical condition and because of my kids.

  2. Thanks for writing Whitney, you’ve had a rough year as well with so much going on around the time of your surgery. I’ve prayed for you and your family many times and am glad you are not in pain, but sorry to hear things are still off. I will say my PAO hip has shown improvements between 6-12 months so hopefully yours will get better over the next 6 months. Ive seen some girls talk of up to 2 years for full recovery on a yahoo PAO hip group. It’s hard to be patient though, especially when you have kids. I guess we read all these crazy good success stories and it’s hard not to compare and wonder why it’s so easy for some and not the rest of us. I’m glad to have met you through the groups, us slow healers need each other for support. Cyber hugs to you:)

  3. My dear Julie, You are a precious jewel and God is working in and on you.
    Don’t worry about your trip, we are here for you.
    See you soon!!!♡

  4. I too have had the three same surgeries and I’m recovering from my last PAO a few months ago. I feel like this PAO blog was about me because all that you’re going through I’m also experiencing, which stinks because its very difficult, however I FINALLY FEEL LIKE I’M NOT ALONE in this and someone out there really understands what I’m going through. Thank you for creating this PAO blog. I couldn’t understand why its been taking such a long time and why I have so much pain & so many flare ups, thanks to you I’m finally understanding that it must my hyper mobility which I had been diagnosed with but didn’t know much about. I read the article in the link you posted on hypermobility and it shed a lot of light. I want to get tested for EDS. I thank you greatly for posting your story on this blog. I too have turned to my faith to get a grip on life again and to have hope again. I had a flare up yesterday after trying to advance my exercises at PT 2 days ago and had to spend the day in bed because of the burning pain & pain moving. I’ve been at this for over two years, so sometimes its hard to shake off the sadness and hopelessness when you’re in too much pain to do anything. I understand what you’re going through because I’m going through it too. It’s very challenging, to say the least. Like you said praying, reading God’s word of hope is what we can do. Luckily we have family who love us and we have access to medical care. Even if it takes us longer than some to recover, in time we’re going to be better than we are now. I agree with you God works on us through our challenges, and we’ll grow spiritually and as persons. Your decision to share your story on this blog has blessed me greatly and for that I am very thankful. Praying for our healing.

  5. Btw I agree that you’re doing the right thing in trying PT again and hopefully you won’t need a PAO on other side like I did. A lot of people only need just one side done.
    I can totally relate to “less is more” and moving slowly with pt, this is what I’ve been having to do and this time around I’m finally making progress and having less flare ups.
    Lastly congrats on your victories! 2hrs standing/walking is amazing in my book 🙂 looking forward to hearing how your appointment went.

    • Thanks so much for your touching words, I almost cried when I read them:) it’s so nice not to feel alone in this journey. I’m so sorry you too are struggling so much post op’s. Hypermobility definitely plays a role in this and not a good one. Im so happy that article helped you, it’s amazing when I started reading it how I was able to “connect the dots” of many issues I’ve had for years that I thought were separate from one another. Patience is definitely much learned through this process but frustration I know is often present. I would love to keep in touch to see how you are doing as you go through your rehab. How far post PAO are you?
      That 2 hour day by the way is like a fading memory now, I’ve regressed ever since day and actually bought a cane yesterday because the posterior joint hurts with every step in weight baring now.
      Anyways, if you want please either email me at juliegonzalez79@gmail.com or find and friend me on FaceBook under Julie Barnes Gonzalez in Ohio. I have a few hip friends that are also hypermobile and struggling and we message each other frequently there for ideas and encouragement. Thanks so much for commenting, hope to keep in touch:)

  6. Omg don’t talk to me about crying, I started when I began reading your posts and continued for the rest of the day LOL! I dont believe Im as hyper mobile as you, yet the pain and situation you’re going through I can totally relate to & empathize with you. This can be very debilitating. but we must refresh our minds & keep the faith. My story, Im in my thirties, i used to dance & perform so I was very active until I suddenly started limping and within a month I could no longer climb down from my upstairs apartment, so I had to cut back on work and was pretty much stuck home most of time, except to go to PT. yea it happened really fast & unexpetedly, crazy! Soon after had hip arthroscopy and at end of 2012 first PAO, and last December Pao on other hip. So it’s been almost 6 months post op. I can tell you that the first PAO took about a year to calm down, pain wise, and function is way better than prior to surgery. Most recent PAO is just as fiesty as the other sister hip (lol of course, it’s genetic! Lol). My surgeon is Dr Millis who is more wonderful than I could expect and also an excellent Pao ortho. He is very compassionate & does all he can to help his patients. Anyone else that has had surgery from him as far as I know heal faster than I have and that’s probably due to the hypermobility I have. I can’t tell you how relieved I am to know I’m not crazy imagining all the weird pain, pulling, burning, sharp etc etc weird pains in my hips, lower back and legs, and knowing that there is a real reason I’m going through this. I’m so sorry to hear you’re hurting now. I know how devastating this feels & The uncertainty of things is difficult to deal with. I’m praying you feel better & won’t need further surgery. Maybe with PT your muscles will strengthen & pain will start fading. I’m hoping. Im in a bit of pain myself, feels like a horse is sitting my hip, and wont get off, Ugh so rude mr Ed! Hehe. Btw did you get your screws out? My hip felt better once I had them taken out on the first hip. I’ll be getting the other ones out this month. Just asking about screws because my phys therapists have told me that a lot of people feel better once the hardware is out. When I got my first screws out I had my doc give them to me in a little zip lock bag, those suckers were Huge!!! Lol. Yes I’d love to keep in touch, I’ll email you. Sorry my messages are so long, guess I’ve been holding it in for a while lol. Feeling understood and in good company is such a blessing! Life will continue to have ups & downs, but I have faith that we will see better days. Praying for us to have clarity & the ability to see the good in the challenges we face. Looking to God for peace, hope and also some awesome miracles up in here, and over where you are 🙂

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