Reflections on SI surgery and pain
As I revisit and reflect on this post it is now 8/13/2018. I am now 7.5 years out from surgery. Doing even better than I was 3 years post-op and glad I have shed even more beliefs that were holding me back from living like I am now. My new thoughts will be in blue. I hope these reflections on my SI Surgery and pain are helpful to you in reflecting on your own story.
As I approach being 3 years out from my SI fixation surgery I realize I have been asked the question, “Would you do it again?”. The funny thing about life and most experiences is you grow through them. As a result of them, or sometimes in spite of them. I hate when this question comes up because how do I answer that…. really?! Did I have a successful surgery… yes?
Was it the SI surgery or was it everything after that?
In either case, I live this amazing life that never dreamed would ever happen… but I also know WAY more now than I did when I went under the knife. I thought I was a well-informed patient. I was… but just like the medical professionals we see, I didn’t know what I didn’t know!
I would tell you today that the surgery helped me most because I was finally able to stop focusing on the idea that my pelvis was unstable and uneven. Those explanations that I held on to for so long crippled me in ways that I couldn’t even understand at the time.
Learning to read research and evaluate the explanations given to me about WHAT caused my pain and why has helped me become pain-free. Unrelenting Chronic pain is so much more than tissues and alignment. I had to experience that to understand it. I had to see progress and challenge my thinking to get here.
How do I see my SI surgery now?
Lucky… damn lucky. As I have seen so many other online friends have the same surgery with seemingly the same symptoms and the same diagnosis and the same surgeon and have such horrific outcomes. Would I do it again? Honestly? I have no idea how to answer that question anymore.
The REALITY that I could have come out of that surgery FURTHER disabled was not something I considered when I made the choice years ago…. it is now. Was my pain horrible, was my life a shell of existence, did I feel as if I might die day in and day out… yes.
Did I think it could be worse? No….. I thought I might not get better as a result of surgery, but it never occurred to me I could get worse. I understand that now.
To the 18-year-old me that got hurt…
You are NOT unloveable because of your pain… physical or emotional.
There is a man out there who will see how beautiful you are, despite all you can not do. Please don’t hide from the world. It’s ok that you can’t ski or hike… not EVERYONE does that anyway.
Enjoy living the life you can at the time. Don’t quit because of fear, but stop putting yourself in situations your body is not ready to handle. You can train for it, you can adapt. You have no business skiing down a black diamond in Colorado…. you just don’t! Right NOW, but you could if you adapted for it! The youth group kids and the boys will like you JUST fine if you stick to the greens, or even hang out in the lodge.
You’re attractive, enthusiastic, smart, and interesting, you don’t have to push the envelope on extreme sports. But you can if you want, just respect your pain and don’t push through it because you feel like you HAVE to.
Your first PT gave you some good and some bad advice.
The Good Advice
1. Only you know how much it hurts, don’t let others downplay your pain, it’s yours and yours alone.
2. Your medical team should work WITH you, YOU have to be in charge of yourself and your decisions.
3. It may take longer than anyone really says it will to get where you want to go, don’t give up, keep fighting, you deserve it.
The Bad Advice
- You will have to manage this forever
- You will need surgery someday
- You probably shouldn’t have children
- You can’t EVER be out of shape
- You should NEVER swim competitively again.
God is NOT punishing you with pain.
Ok, I know you think you have done some unforgivable things, and you have deep deep wounds, but dear sweet Amy, God did not do this to you on purpose. This is not your thorn in the side like Paul. It is an injury that happened in a sport you love that will affect you for a long long time, but PLEASE do not tie this to the emotional trauma in your life right now, they don’t belong together.
As for why God does not take it away…. sweet Amy. God WAS looking out for you. The pain is as bad as you think, but it’s not because you deserved it. There is no way you can see into the future and I promise you God will take this horrible pain, and seemingly endless experience and he will use it and your passion to go back to school, start a blog, write a book, share what you have learned, and to help start a business. All of these things come out of this experience, and it’s amazing.
So no, God is not punishing you and he will use this to mold you and teach you, and it’s not what you wanted, but it will bring good things into your life. So please, stop crying and BELIEVE God loves you as much as he says he does.
To the version of myself in pain trying to figure out what to do next and where to have surgery!
If it looks too good to be true it probably is.
You have waded through so much material and spoken to so many surgeons… You’re asking important questions, but what you don’t know is NO ONE has the answers to them. Not yet anyway. The people you are asking haven’t stayed updated on the science of pain. They are answering you from their framework the best they can. Be open to other ideas.
Just because someone SOUNDS knowledgeable doesn’t mean they are. You’re a patient so you have no reason not to believe what people say, but Amy…. you know how to research claims. You were so busy trying to find someone to validate you, you missed some key information. You forgot to ask why people thought differently and just assumed they were wrong.
You wanted to believe the information you heard so desperately that you left logic to the wayside. You wanted a medical professional to be in charge so you didn’t have to be anymore. THAT was your mistake. You gave up control, and you ignored answers to questions that made you want to ask more, but you didn’t.
You were so tired, so exhausted from fighting that you just laid down and let someone else soothe you and tell you it would all be ok. It worked out for you, it didn’t for others. You were lucky.
You never held as tightly to the “alignment” issue as others… yes, it makes perfect sense. Yes, you wanted it as part of your surgery BECAUSE it makes sense…But here is the deal…. no one knows HOW to measure that.
Checking those bony landmarks…. turns out that doesn’t make the surgery more or less successful… just puts you out 1,000 bucks plus airfare, hotel, and food. Stay at home if you need a revision.
ALLLLLLL those other surgeons seem to have a point when they say the body relaxes when you are knocked out… they might not be right either, but the people who did your surgery can’t prove they are any more right than every other surgeon who does this surgery without PT alignment.
Let go of the idea you “should” be better in 6-8 weeks.
Your PT keeps telling you this is going to take as long as it takes. STOP comparing your recovery to a sheet of paper or what the surgeon said. Yes, your surgical wounds will heal in 6-8 weeks… you have a lot more to heal from and it’s not all tissues. Recovery will be a challenge, but you are up for it. Don’t beat yourself up when you can’t make yourself get better faster.
You’re doing everything you can. Eating right, sleeping, doing what your PT says, taking your meds, and resting as needed….. you WILL get better but it is going to take longer than 6-8 weeks. That’s ok. You’re going to learn a lot about yourself and you might even find a whole new life wrapped up in this recovery.
Learning to trust yourself and your body will be a key element of recovery. It takes a lot of practice, and patience and wins. Don’t believe every narrative you are given about why you hurt.
You aren’t as broken as you think. In fact, you are quite a bit stronger than you think and in a bit, you will find yourself doing things you never imagined. Hang in there younger Amy, it will all be worth it and you will be living a life you never dreamed possible.
KEEP DREAMING!!!!
More on my post-op adventures can be found in my Memoir “Restoring Venus”
