6/7 week scope check up with surgeon

Well yesterday I had my 6 (well really 7 week) check up with Dr. Ellis down in Columbus for my right hip scope.  Prior to seeing him I was seen by one of the PT’s from his hip team to check on my progress and see if my local PT is following the protocol and make sure I am progressing.  Well in a nutshell I’m not progressing and my suspicion from the past week and a half was correct and my PT was not taking me in a direction that I needed to go.  The OSU PT said that the first “phase” of recovery (weeks 1-4/6) should be focused on decreasing inflammation, increasing range of motion of the hip, and most important lots of soft tissue work to the muscles around the hip to get the hip flexors/adductors/and rotators to shut down in preparation for strengthening the glutes, which happens at a basic isometric level in the beginning with simple exercises, but really starts to happen in the second phase of recovery (starting usually week 4/6).  Well, my PT never did much soft tissue work on me, only twice worked a little around the incisions to decrease scar tissue.  Apparently she was supposed to dig in deep and shut down the adductors and especially the psoas and other hip flexors that dominate, and that is why my pelvis still is pulling toward that hip, why my SI joint is hurting, why my lumbar spine is hurting, why I have nerve pain on/off through my left and sometimes right leg (from all these structures getting pulled on and irritating the nerves) and why I have fascial pain all down my legs too.  My PT thought my pelvis and hip were unstable and was scared to do soft tissue work thinking she would destabilize me so instead kept progressing me with more exercises (which was making me more miserable because the correct muscles can’t fire because they are inhibited by the tight ones), but here is an expert on the hip team telling me the opposite was true, that I was tight from surgery and would not be able to progress until I had these muscles released.  I almost cried because everything she said was part of the theory I was developing in my own head based on things I’ve read, how my body is feeling, and the feedback from my myofascial PT as well (that I see privately and pay out of pocket for).  She told me to stop strengthening, go back to very basic isometric stuff from weeks 1-4, and work with my PT or whom I choose to get the tight muscles to release.  She too admitted I was a complicated patient (as I’ve been told by everyone I’ve met through this journey) but she was able to see how all the pieces were connected instead of telling me that I have 3+ different things going on separately, she sees how it’s 1 problem with multiple levels.

After I saw her I got x-rays of my hips, then went over to see Dr. Ellis (who had spoken with his PT that assessed me before I got to him) and he was actually happy.  My hip range of motion is fantastic, he said he can tell by moving it around passively if there’s any restrictions or scar tissue or issues inside the joint and my hip felt great.  I had no pinching or discomfort, just a ton of muscle pain and tightness in the muscles.  He said that was good news because that all can be fixed with soft tissue work, strengthening, and time and not the need for more surgery.  He said he understood the frustration I am having because I’ve had 3 surgeries and 3 PT’s now, and none of them have correctly rehabbed me.  I have lost confidence in PT’s at this point.  I went to the 2 best places and saw the top PT’s at each in my area for the first two surgeries, now I went 30 minutes away to a PT that trained with one of his hip PT’s down at OSU years ago and still I had incorrect therapy.  I so wish I lived closer to Columbus, but I don’t, and I can’t physically drive down to Columbus every week to see one of his PT’s, so I asked him if I could starting getting ART and keep with my myofasical therapy to work on releasing the tight muscles, do my own PT following his protocol (that I have a copy of) at home, and come to Columbus once a month to see the hip team PT I saw today and have her check on me and let me know how I’m progressing and he was completely ok with that.  It would have been nice to find the “perfect” PT, but I haven’t and I feel confident enough at this point with the soft tissue experts I know and with my own knowledge of exercise (guided by the protocol) from all the PT I’ve had to just try it on my own for now, being guided at a distance by the OSU PT.  I just don’t want to waste my time and money anymore on incompetent PT’s.  Dr. Ellis also truly believes all the “weird” nerve and fascia and back and SI pain are coming from the tight muscles and imbalances from the hip muscles and that he feels full confidence that I will be very close to my normal in the future.  He said I will take longer than most because of the hypermobility, but he says I will get there, and that I should be able to do “everything you want except long distance running.”  We’re hoping in a year or two I’ll be at the point he’s talking about.  Boy I hope he’s right, but even if I am limited in some things I will be ok with that, I just don’t want to live with daily life limiting pain, just want to be a mom and do things with my kids again, hopefully return to work as an OT in the schools, and have some light recreational exercise and activities in my life again.   One day at a time though.  I am returning to see him again in 2 months, and I will see the PT there in 4 weeks and then again when I go back to see him in 2 months.  Hoping I’ll be in a better place then.  I have to say he is an incredible surgeon, not just in the operative work, but I’m so impressed how he works closely with the PT’s, how he runs so much research that guides his practice, how he will sit and answer my 50 questions patiently each time I see him even though his office is always packed, and how he looks at and understands the functional aspect of everything.  I’ve seen enough doctors through this journey and my SI joint/back injury 11 years ago to know having all of these qualities in a doctor (especially a surgeon) is just incredible.  I feel very blessed to have been led to him 13 months ago.

So I’m just going to share a frustration that I have lately is that everyone I know and see always asks me how I am doing (which is polite and sweet and I would probably do the same thing in if the situation was reversed, but….), they tell me I “look great” and I don’t know how to respond.  If I say “good” I am lying because I am not good, but if say “ok” or “hanging in there” they continue to go on saying “you must be better because you look great.”  Let me just say this, I have dealt with pain for sooooooo long now I can choose to show it or hide it and either focus on it or try to distract my brain from it.  When in public I tend to hide it and try to distract my brain so people don’t feel uncomfortable around me because people just don’t seem to act normal or want to talk to me when they know how miserable I am feeling.  Another common thing is people often try to minimize it, which is frustrating, but I realize that is their way of coping with being unable to understand what it’s like to have chronic pain 24/7.  I have a lot of distraction and coping techniques that I use throughout the daytime that help with the pain which I try to use when trying to be “normal” so even when I am trying to engage in a task or conversation, I am often at the same time distracted and have a hard time focusing on maintaining a long conversation with people or completely a long task.  I used to have an awesome memory about everything, now it’s not so good, which is difficult for me to admit. My most common technique is trying to ignore the pain and shift around to different positions, I also sing phrases from worship songs in my head because that is very calming to me, I also try to focus on God and all the good people and things I see that he’s made around me, say mini-prayers, sometimes I repeat a scripture or phase that is inspiring to me, etc…    I started reading another book and it was saying that most of us walk around with these presumptions that  “I’m supposed to be happy” and “the world centers around me and what I want” (which was sooooooo me by the way) but that’s not why God created us, he created us with the purpose to glorify him.  Lately that’s the phrase I repeat to myself, “it’s not about me and my happiness, it’s about glorifying God” and I am trying to figure out what that looks like in every area of my life.  Really brings new perspective to me, especially when I feel myself going to that angry and bitter place that I feel myself drift to at times; however with my newly developed strategies God can usually bring me out of that place in anywhere from a few minute to at most a day or so now.  The book also talks about how we live in a fallen world and bad things will happen at some point to us, but if you can find meaning in those bad things then you can deal with them much easier.  I’ve sought meaning and I’ve been blessed that God has revealed many things to me that have helped give me purpose on this journey and I know it’s not all for nothing.  In the first 1-2 years of this I mainly prayed for physical healing, but I received spiritual healing and emotional healing and an inner peace and love that carries me through the toughest physical days.   God gave me what I needed instead of what I asked for.  I still ask for the physical healing and I hope that it does come, but I am a changed person and feel like I can face things a little stronger than before.  Thanks for reading, until next time…

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One thought on “6/7 week scope check up with surgeon

  1. Thanks for sharing Julie. You are an amazing young woman on a great journey with Christ. You will know the purpose of this journey as God continues to reveal it to you. You are growing stronger each day as you are lead by the Holy Spirit who walks with you. Your strength amazes me!!!

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