The decision to move forward with surgery

I’ve been putting this post off the last few days, I just mentally and emotionally and physically was not doing well, but today I’m in a little better place in all of those areas so it’s time to update.  I saw my PT and surgeon last Thursday (July 31st).  My PT was happy because he said I have an incredible difference in my strength from when I first saw him early May, even a big difference from when I saw him on July 8th.  I was able to stand on 1 leg without my pelvis dropping and do mini squats with my right leg without the knee collapsing in.  He said given how I strong I was I should be able to walk a couple blocks with little to no pain….yeah, that doesn’t happen.  I feel stronger in my big muscles in my butt (the glutes) and in my low back, but I still have the same pain with guarding tight deep stabilizer muscles around the hip (my rotators and psoas).  Being that I am stronger and looking better, but have the same pain he said that’s pointing more to a joint issue.  He said that if there’s pain/irritation/inflammation in the joint that will cause the muscles around it to “shut down” and go into protective mode and that causes more problems, and it becomes a vicious cycle.  It completely sounds like what happens with me, I start out with minimal pain after first moving around in the morning, but the more I walk and bare weight through that hip, the worse it gets as the day goes on.  Weight bearing even in standing is not comfortable, I often find myself standing with all my weight on my left leg and I often feel instability in the joint itself which is uncomfortable and causes all the muscles around it to freak out.

Right after I saw my PT I went to see Dr. Ellis and he did some manual things with my hips, comparing the now “better” PAO left side with the right scope side and told me my right hip is still very lax.  Then he did some crazy maneuver where he flexed my hip and knee and pushed down hard into the joint causing bad pain.  He didn’t seem to like my response to how much pain it caused.  We re-looked at imaging from last year on my 3D CAT scan and then he gave me his opinion.  If I continue to strengthen I may get a little better, but given it’s been about 10 months and I am only doing about 30% of my “normal” life, it does not look like I will get back to anything close to what I would like.  He said if I got a PAO on this hip then he felt confident I would have a lot of relief and recover very well.  He said he would not push the surgery on me, that it was my decision.  As miserable as I’ve been for so long now, the decision is easy to me, I’m going forward with it.  He did say that my dysplasia is very mild, but I also have some mild version issues as well, and pairing those things with my bad hypermobility is likely why the scope did not work.  He thinks without my hypermobility I would have been ok with just the scope.  It sucks, but it is as it is.  Unfortunately due to him changing his practice and leaving OSU he cannot do my surgery until the end of November.  I’m super bummed by this because  it’s more time that goes by with daily awful pain and limitations, more wear of my hip joint itself (from the instability within the joint), and the timing is so close to the holidays and snowy weather (which will freak me out on crutches).  However it’s out of my hands so I have to just go with it and do my best to manage until then.

I had a terrible flare up within 24 hours of leaving Columbus.  I think all the hip stuff Dr. Ellis did started the flare, then the next morning despite my hip having more then it’s normal pain (was feeling worse) I decided to do all my PT exercises 2-3 sets, and wow was that a mistake!  I was flared up all weekend so bad, worse then I’ve been in months.  I’m still flaring some, but starting to come out of it today.  For those that don’t know what a flare is, for me it’s when all the muscles around my hip joint spasm up, which then causes my back to spasm up, and with the whole right side and back spasming my “good” side then tightens up too and I get awful nerve pain.  Basically from my mid back down to my feet burning awful pain.  Anyways, I had to do very little of my exercises these past few days, waiting for things to calm.  I have been going to the gym the past couple weeks 2-3 times a week to focus on some light upper  body strengthening stuff to stay as strong as possible for when I’ll be on crutches again.  I just do whatever PT exercises for my lower half that I am capable of that particular day based on my pain level.

We’ve been riding out the summer with the cooler then normal temperatures (which bums me because high heat and humidity are my body’s best friend!).  My kids start school in less then 2 weeks (crazy early this year), we are hosting an exchange student from China who will be arriving next Wednesday, and trying to get a few things in(like miniature golf and swimming) before the daily routine and of school and homework and schedules takes over.  I am in charge of our church parking lot sale which is this Friday (with all the proceeds going towards the Christian Children’s Home of Ohio) so I’m a bit stressed and anxious about it because a lot of physical work needs to be done and I can’t do anything physical, so sitting around and watching others do it will drive me a little insane.  It’s hard because in my brain I still at times think I can do the things I once could.  You think I would have learned the lesson that I can’t by now after all of the flare ups I’ve caused myself.

Anyways I was thinking of some of the comments people have said to me recently and personally find it fascinating that people keep telling me how good I look (from the perspective of the hip issues and surgeries).  I think I have really learned how to “hide”.  I always get a look of surprise from a person when I honestly tell them I am struggling and in a lot of pain.  I have evolved from the way I  used to be when I wanted to look “bad” so people knew how bad I felt, but now have moved past that stage and don’t want looks of pity and words of sorrow.  It’s a difficult situation and I struggle with it (as only my closest family members get to see) but I don’t want all these orthopedic issues and constant pain to be what defines me any longer.  I long for normalcy of some kind in my life since I can’t do most of the things that made my life “normal” before all of this, so the only normalcy I get is by having conversations that don’t revolve around “poor me.” I’m happy to give an update if someone asks and discuss about the good things that have come out of this situation, but don’t want to dwell on it for hours at a time (because that just puts me in a dark and negative place). God has allowed me to be placed in this situation for many reasons, some he’s revealed to me, others not yet.  I am frustrated by the longer wait for surgery until the end of November and had massive anxiety about this journey having to be prolonged even longer (it just seems like I’m always “waiting” for something), but I know also that God has a purpose in it being delayed .  I don’t know what it is, and I’m not happy about it, but I have accepted it today.  I found myself these last days getting caught up in circumstances and turning inward instead of fixing my eyes up towards heaven and focusing on God and his will, his purpose, and thanking and glorifying him for who he is and what he’s done for me.  Thanks for reading!


4 thoughts on “The decision to move forward with surgery

  1. I’m glad you were finally able to make a decision. I had to wait all of 2013, and it was excruciating mentally and physically. On the plus side, you won’t have any regrets about whether the surgery was needed. I feel happy that my right hip is doing so well after the open SDD. Well, it’s doing good for me. There is a woman who had surgery the same day as me, and she’s running. I’m still hobbling without one crutch. The pain is much less though, but there’s a lot of weakness.

    I have struggled to make sense of my own journey of health issues. Five years ago I was normal, not necessarily happy. I relapsed into anorexia because of it, and only went into remission after finding the hip groups. For the first time in forever I didn’t feel alone, and that was a heavy burden on my heart.

    Many good things have come about because of my hip problems and Ehlers-Danlos. I found a love for writing fiction, which I never would have discovered had I not hurt myself five years ago. I also met many amazing friends through writing that I would have never met otherwise.

    I just started writing original fiction and blogging after I was bullied out of fanfiction. I cried so many tears over that too because I had been doing it for five years. It was safe and something I knew. I actually had been wanting to write original fiction for a while, but it was scary. I needed that push, as unpleasant as it was, to move onto something even better. Most of the things I write about tend to deal with either mental or physical illness, so I guess it’s also cathartic for my soul to pour my angst out on paper. I’m writing short stories and working to get published in literary journals 🙂 I don’t know that I’m glad for the bad things that have happened to me, but I grew a lot because of it.

    I’m not sure if things happen for a reason. I do believe in God, but I don’t know if he has plans for me or not. I used to think so, but I can’t apply that law universally to everything that happens in this world. I hope by this time next year you have a greatly reduced level of pain. I know how much it sucks 😦 My left hip is okayish, but much better than it was before the scope. My right hip is a bit achy, but the sublaxations and labral pain are gone 😀 I don’t have to worry about my hip popping out when getting up from a chair. I hated that so much D:

    • I’m so glad to hear that your surgery has gotten you to a better place, you’ve had such a long journey. I’m also happy to hear that you are growing and expanding in your writing. We could sit for hours and discuss the negatives of these hip journeys, but positive does come out of them, we just don’t often see it right away. I hope you continue to heal and get stronger with that hip! Thanks for your encouragement:)

  2. Julie, I am sure you are not looking forward to surgery. I know I wouldn’t be at all. I know that God has a plan for you. You have grown so much in the time I have known you and I am sure you will continue to grow. Christ is with you on your incredible journey. Your journey is not an easy one!

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