Second PAO

I had my fourth and fifth hip surgeries on February 12th, 2020. It’s possible that these could be my final hip surgeries in my life. Although I think I have heard that after every single surgery I have ever had, it’s still nice to think about the possibility of it. That’s something that I’ve found during these difficult times, you have to hold on to every positive thought and keep it close to you. Since you’re physically immobile, probably bored, and in sometimes in pain, holding on to too many negative thoughts makes the whole process so much more. There is no question that if you have gone through a PAO you are a strong person. It changes you to have a major surgery like that. But, depending on how the journey was for you, it can also change you in a negative way. I used to be such an optimist. But, with the disappointment and let downs I have faced, my brain just doesn’t work like that anymore. All of my friends and family still tell me that I light up a room when I walk in it, and that I’m so radiant and happy and positive around them. But, when it’s just me, it’s not all sunshine and rainbows. However, I’m working on it. I refuse to live a life where I’m conditioned to believe in the worst. I’m telling myself that my pain will be gone one day, that things will get better, and that I will come out stronger than I could ever even imagine myself to be. If you’ve gone through a difficult experience with hip dysplasia, you have to tell yourself it will get better. Write your feelings down, imagine yourself running on a beautiful trail, dancing on a stage, or whatever it is that you loved to do before you were faced with this. Tell yourself that you’ll be back there someday, pain free, living your best life, absolutely thriving. I don’t know if I really see a point in going into every little detail about my surgeries, but I will give you the basic outline. First, I got an arthroscopic procedure that fixed my labrum and a few other things. Then, I had my PAO about an hour later. I woke up and was moved to the Pediatric ICU. I had my surgeries on Wednesday and left Saturday. I had a few complications, I got home and got sick a few days later, had really bad headaches, trouble sleeping, and pain in my good leg. However, I prepared myself for all of this. I was 100% ready. I believe that helped me a lot. It wasn’t a shock that everything didn’t go perfectly. Last time I had a PAO, I had no pain whatsoever in the hospital. This time, I actually was in pain at points. It was definitely more difficult with the pain aspect. I was on Oxy as needed, Morphine, Tylenol, Lovonex, and Celebrex when I got home. In the hospital I also took Valium and Dilaudid as needed. I was ecstatic to be home and start really recovering. I took Oxy when I was in really bad pain. I took it approximately three times. All of the rest of the medications were supposed to be taken for three weeks. I continued taking the Celebrex and doing my Lovonex injection for the full three weeks. However, I only took the Morphine and the Tylenol for a week. I knew that I could handle any amount of pain I was having and felt like I didn’t need the pain medications anymore.

After these surgeries, I got home and was thinking about what I’ve gone through the past four years. And, for the first time really ever, I told myself how proud I was. I pushed through, I kept a 4.0 GPA and a social life, I got help for my mental health when I needed it, I kept going to PT and working out when I could, and I never gave up on finding a solution. Years of Physical Therapy, Chiropractors, different pain medications, a foot injury that resulted from my hip problems, 5 cortisone injections, 5 surgeries, and 4 years of pushing through. Look back on your journey if you have had chronic pain. Think of what you have endured. If you can get through that you can get through anything. You are tough. You are strong. Even if you aren’t in a place where you can tell yourself that, I’m saying it for you. You can do it. You will get better. This is not forever. DO NOT GIVE UP on finding a solution and a cure. I believe in you!!

First Week Post PAO

My PAO was done on June 25th, 2019, about 6 days ago. My recovery has been no where near as bad as they said it would be. I arrived to the hospital around six in the morning on Tuesday. My surgery lasted about five and a half hours, and I came out with three new scars. They did the PAO first, and then tried to go in arthroscopically and fix my previous labrum issues that had been further damaged by surgeries in the past. Hence the three new scars, instead of just one. When I woke up, I was nauseous. I don’t remember every detail from those first couple groggy hours right out of the OR, but I do remember throwing up and constantly apologizing to the nurses for it. They reassured me that they were expecting it, and cleaning it up was just part of their job. I was then relocated, which I barely remember because of how sleepy I was, to a different floor where my room would be for the next couple of days. My parents switched off staying with me in the hospital, sleeping on a small cot in the corner of the room. The nurses took amazing care of me all throughout my stay, and constantly checked in on me even though they had many patients and were extremely busy. I was told over and over again that I looked like I didn’t even have surgery, which although I knew was a HUGE exaggeration since I hadn’t showered or even stood up for 48 hours and still had drains attached to my leg, I appreciated it. I was always reminded by the nurses and physical therapists there that I was having one of the best recoveries they had seen. That is not at all me bragging or showing off, because it has nothing to do with personal strength or skill. It was honestly lucky, and probably had to do also with the fact that I am young and relatively healthy. I am including that part in this because I want anyone who is having this surgery or debating it to know that not everyone has a terrible experience filled with complications and agonizing pain. The physical therapist that I saw throughout my stay in the hospital told me that the longer patients have dealt with the chronic pain and the more intense their pain was, the easier the recovery usually is. For reference, I had been dealing with it for around four years. So, if you have had it for around that amount of time or more, you probably will have an easier experience with the recovery. I left the hospital on Thursday, June 27th in the late afternoon. I was told that typically, about 10% of patients leave on Thursday, 80% on Friday, and 10% on Saturday. I was excited to be going home so soon, but also nervous and anxious looking ahead. 

So Far

Now that the basic introduction is out of the way, let me tell you the whole story. There is so much to tell, I don’t know where to start. I should start at the beginning, but really, there is more than one beginning to this story. There is the beginning of the issue, the beginning of the pain, the beginning of the treatments, the beginning of the disappointment, and the beginning of the end. I guess I will start at the beginning of the issue. Technically it started when I was born. Or at least, that’s what most doctors think. I was born with retroverted hips, which is a form of hip dysplasia. The part that makes it all confusing is that most doctors check for this when the baby is first born. Many people who have hip dysplasia have stories of being in a brace for the first several months of their life. But for me, it was never known. Maybe it is because my dysplasia is more unique, or maybe the doctor just never checked for it. Either way, it took sixteen years to really find it. 

I was a dancer for about ten years. I did all of the sports that little kids do. Soccer, swimming, basketball, cheerleading, gymnastics, you name it. But dance was always my favorite. I started doing jazz and ballet, but soon quit ballet to pursue gymnastics. Once that phase blew over, I started ballet up again. My love for dance was growing every day. I was convinced it was what I was meant to do. Until one day, in October of 2015. 

In ballet, there is a common move called Grand Battement. It’s when you lift your leg up slowly to about 90 degrees and then slowly lower it. Every time I had done this move, my hip would crack. I didn’t think anything of it for some reason, and imagined it would happen to everyone. It was about five months before I figured out that it was an issue. I did not want to admit to myself that something could be wrong. But, my ballet teacher recommended that I get it checked out immediately, so I did. 

The doctor I went to diagnosed me with hip impingement syndrome. This was a big deal to me. It sounded scary, and very serious. By this time, the pain had started. It was bearable, but still uncomfortable and I wanted it gone as soon as possible. He didn’t seem to think it was a very big deal, and told me to start physical therapy and it would naturally feel better soon. Then, when I asked for a note to excuse me from gym class, he looked at me confused. He asked what I was doing, and I told him it was flag football. He looked me right in the eye and told me that I should be fine to keep playing, and that it seemed like I was just a girl trying to get out of flag football. I was stunned since I had just been recommended physical therapy, but had to continue gym class when I was in a lot of pain. 

Throughout this whole experience, I have done so many rounds of PT. If my count is right, I have done about 21 months of PT throughout the past 4 years. My most recent physical therapist told me that it is an unspoken rule between most physical therapists that if after 2 months there is no improvement, the patient should visit a doctor again. I was at Athletico Physical Therapy for roughly 8 months. The therapists there did not help me at all, despite their efforts, and sometimes it feels like those intense 8 months only made the pain worse. So, finally, it was time to get a second opinion. 

When I went to a different doctor to get my hips evaluated again, I had no idea how much was truly wrong. I wasn’t ready for what they would tell me. To this day I still do not even know most of the things wrong in my hip that they told me. All I knew by the end of the appointment was that I had a torn labrum which required surgery, and that more would be fixed while they were in there.

My first surgery was on July 18th, 2016. I had my labrum fully reconstructed out of cadaver tissue, and much more done. The recovery was not too bad, only 6 weeks brace and crutches and couple months of PT. Everything seemed to be getting better, and after only about a year and a half, it seemed to be fixed. I was ready to move on and get back into dance and everything I loved to do, pain free.

It was going great until I realized that my left side hurt just the same amount, and cracked just like the right one did. And, believe it or not, I needed surgery on that one too. More physical therapy, more MRIs, and one surgery later, I was ecstatic. The second surgery was a success, and all of the same things were fixed. I now had 2 new cadaver labrums, and I felt unstoppable. I was going to go back to my life, and be able to do everything that normal middle school girls do without the added pain. 

Soon enough, my world came crashing down. I started to feel the same intense, intolerable pain as I had before surgery. I went back to the same doctor that did my surgeries, and he decided that it would be best for me to have more X Rays and MRIs. When those were all said and done, he was the one who first saw my dysplasia. However, he really downplayed it. He looked at my parents and I in the room and told us he didn’t know why pain was still continuing. Even though he knew very well that the retroversion was what was causing it. 

A couple of months later, we went back to try talking to this doctor one more time. This time, he did talk more about the retroversion and informed me about the PAO. The irony of this surgeon talking about how terrible of an option the PAO is is simply hilarious at this point, as now it has come out in recent news that he was assisting PAOs the whole time.

Once it was clear that this doctor would no longer be of help, we got several more opinions. I had more MRIs, cortisone shots, CT scans, X Rays, etc. 

I decided to go to get another opinions. This new surgeon spent hours talking to us, listening to our story, and trying to think of ideas. He gave a lot of useful information about the PAO. It was the most professional, comforting, and caring doctor I had ever been to. It was then that I decided the PAO was what needed to be done.

I ended up decided to have my surgery done at the last surgeon I went to in Chicago. The appointment I had with him was just as amazing as my last one. My surgery is now scheduled for June 25th, 2019. I will have a reverse periacetabular osteotomy on my right hip. Although I need it on my left hip as well, you can only get one side done at a time and no plan as been made for my other side yet. I plan to write a couple days after my surgery and keep updates on my healing. 

The Beginning

Hi and welcome to my blog! I’m going to try to keep this as anonymous as possible, but I will give you some details about myself. I’m 16 years old, and a sophomore in high school. My goals for the future are to become a successful journalist and be involved in philanthropy and charity work for as long as possible. In my free time, I mostly hang out with my friends, write, and go shopping. But, you’re probably wondering what I mean when I say “my journey”. I have been dealing with chronic hip pain for about four years now. I have a condition called hip dysplasia. Specifically, my kind of dysplasia is very unique. I have what is called bilateral retroversion. I know, a lot of medical words. Basically, the femoral neck in my hip is tilted backwards, making it not fit in the hip socket and causing extreme and constant pain. With this comes other complications, such as bone deformities and torn labrums. I have gone through many treatments, some bigger deals than others, but we will get into that later. Now that that’s out of the way, let’s talk about what I want this blog to be. I started this so that I could have a place to share my story, and document everything that happens. Throughout my experience so far, I have learned a lot of lessons. I’m going to talk about what I’ve gone through and what I have learned. I really hope to shed a light on how difficult hip dysplasia can be and encourage those who have it to be brave, stay strong, and stay positive. You WILL get through it! In my next post, I will be detailing the background of my hip condition and treatments. Thank you for reading! Stay tuned.