My name is Alycia, and I was diagnosed with bilateral hip dysplasia in 2008 when I was 24 years old. I had an arthroscopy on my right hip, and a periacetabular osteotomy on my left hip at 25. I just turned 26, and am having another osteotomy on my right hip in just a few hours.
I was checked for hip dysplasia at birth because both my mother and her sister (my aunt) have it. The doctors said I was fine. I grew up healthy and normal. I took dance lessons as a child, and started performing in theatre as soon as I discovered it at 8 years old. I performed all through high school and college, earning a bachelors degree in Drama in 2006. I had been waiting tables through school as well, working 30 hours a week on my feet. I was also living in San Francisco, without a car and walking everywhere.
Right after I graduated, I was at work, standing in the kitchen, when I shifted my weight weirdly, and my left hip felt like it flew out of the socket to the other side of the room. I kind of fell over and caught myself on the counter in a panic. I was in so much pain, I could not put any weight on it, and had to call my boyfriend to cab over and get me. I spent two weeks out of work in bed. Uninsured, and freaked out, I called my mom to ask about dysplasia and her experience. She was sure that I was fine. I had been checked at birth! I was fine! So I waited. I went to an amateur body worker that manually lifted my leg out of the hip socket and put it back in. I was sore for a few days and then felt better. I brushed it off.
After college I started working at a dinner-theatre-circus where I sang, danced, and served food and drinks, all while wearing a corseted costume and heels. It was around this time that the sprained ankle madness began. I was on vacation in Costa Rica, in July 2007, where I took a step that felt like my hip, leg and ankle bones were unaligned, and fell flat on my butt with a bad sprained ankle in the middle of the road. Just walking across the street! It set our trip back a couple days, but I kind of just walked it off. Then again, in late August, I was at the circus doing a Tango number, when my foot slipped right out underneath me and I slammed hard on my tailbone and sprained my ankle very badly again, right on stage! I took 4 weeks to heal and time off work.
It was around this time that I started noticing a deep pain in my right hip and bum. I thought maybe I had bruised my tailbone when I fell, and started to get concerned. At first I could only feel the pain when I was lying down, or sitting. When I slowed down. I was so active and busy and running around dancing, dancing, dancing, that I didn’t really notice the pain until I stopped. Then it started to get worse, and I was feeling it all the time. Deep in my groin, down the side of the hip, and what I think are my iliopsoas were burning a dull constant agony that could not be tamed. I was insured by Kaiser and started seeing a physical therapist. Everywhere I went I told the doctors about my mother and her dysplasia. I had intuition that this was what I was experiencing, but just wanted to find out absolutely, one way or the other.
Of course, therapy didn’t help and I insisted on being referred to an orthopedist. I was referred to someone at San Francisco Kaiser, who gave me an MRI and an arthrography on my right hip. The doctor told me I had a tear in the labrum of my right hip and would need an arthroscopy, to be done by a different doctor. He referred me out to San Rafael Kaiser to see Dr. Antounian. I couldn’t get an appointment for 7 weeks.
In the interim, I had another nasty fall at the circus, due to a small patch of spilled water on the stage. I was running during the finale and flew face first towards the ground, before I stuck my hand out to catch myself. Splat! A shock went from my fingers, all the way up my arm into my spine and neck, jamming my left arm terribly. My hand immediately turned blue as it bruised and swelled before my eyes. I was taken to the emergency room and splinted, before being sent home without broken bones. That was on December 30th, so the doctor’s were closed until the 2nd of January, when I was able to make an appointment and get a better understanding of what my care and rehab would need to be.
While at my appointment that day, an electrical fire started in the bedroom I rent in a flat of a large old beautiful Victorian. When I came home, my room and everything in it had been eaten by fire. I moved to a futon on the floor of our living room for three months while construction hammered away 7 days a week.
A few weeks after the fire, on January 25th 2008, at my appointment with Dr. Antounian, I was diagnosed with bilateral mild to moderate dysplasia. He suggested an arthroscopy of my right hip as soon as possible to avoid any more damage to my already detached, “peel off” lesion of labrum mush. This is when the freak out began.
My family and life erupted with this news, and the challenge of dealing with it. Where will the surgery be, where will I recover, who is going to pay or it, what does this mean in THE LONG RUN? My mother decided I should not do anything until I saw her dysplasia doctor in San Diego, Dr. Richard Santore.
In June 2008, Dr. Richard Santore inspected my case. He suggested that I have the arthroscopy on the right hip, to be performed by Dr. Muldoon, a partner in his practice. He also discovered that my left hip is much more dysplastic than the right, so he suggested a periacetabular osteotomy (PAO) for the left hip, in the hopes that it would ease the load off my aching right hip. Although I was skeptical, I trusted his diagnosis. I didn’t understand how the constant pain, popping, and grinding going on in my right hip was better than the near nothing I felt in my left. It just seemed topsy-turvy! But the balance story started to make more and more sense, as I started to come to terms with the fact I was going to have the surgery no matter what! The pain in my right hip was so bad, I just prayed that Dr. Santore was right and that I could have just and arthroscopy and one PAO.
I am skipping a lot of insurance and scheduling drama, to move forward. More on insurance later.
In August of 2008 I had an arthroscopy on my right hip, performed by Dr. Muldoon at Kaiser Otay Mesa. The surgery was about 2 hours, and I was sent home the same day. I slept for a couple days, and then started hobbling around. Dr. Muldoon basically told me to sleep, and then to walk it off. So I walked it off after two weeks or so. I was feeling pretty good, although not solid on my feet. Still a bit of pain, which I was told is normal for pain to last anywhere up to 6 months after an arthroscopy, partly because it causes a lot of nerve damage.
Six weeks later on September 29th 2008, I had a PAO on my left hip, performed by Dr. Santore at Kaiser Zion. Nothing can really prepare you for how terrifying it is to wake up from this surgery and realize just how paralyzing it is. At my pre-op for this procedure, Dr. Santore told me that during the first few days after the surgery, that I would have “buyer’s remorse. But try to remember I told you that you would feel that way, and I am telling you now that it will get better.” And he was right.
Dr. Richard Santore is a wonderful surgeon. He is very good at what he does, proud of it, and teaches others to be as brilliant as he. My favorite thing about him though is his attitude. He is honest, yet positive, and can laugh with you. I have faint recollections of waking up after surgery to him bouncing up and down with an x-ray of my new left hip with four screws; pointing a pen at it and saying “They’re perfect! Better than perfect!” Or when I asked how long I would have to wait to have sex, he looked me straight in the face and said “ One year,” before exploding in a fit of laughter. I’m sure my bones are soaking up all that positive energy.
My recovery was long, arduous, and slooooooww., but very well on my left side. I started on a walker, with a home health physical therapist for the first couple weeks. She didn’t know what to do with me, because very few people know what this surgery is! I think finding a physical therapist for recovery from a PAO is harder than finding the right surgeon. At least there are only like, five surgeons to choose from that are specifically trained in this procedure. Physical therapists may not realize how sensitive you must be with recovery from a PAO.
At 8 weeks I started to see Chad Neubrand in San Diego. He has worked with Santore’s PAO patients for 10 years. He was extremely helpful, knowledgeable about my situation, and pushed me to places I was too scared to go on my own. I have to say that he helped me get back to my life with confidence in my strength.
During my recovery, my right hip and thigh muscles flared up in an inflamed, pins and needles, stinging and burning sort of way. It was the same pain as before, but worse, with the stinging sensation shooting down the front and side of my right thigh. Dr. Santore said it was probably nerve damage flare up from the arthroscopy, and having to carry my full weight for the duration of my recovery. He put me on Lyrica for a few weeks, and the stinging sensation went away completely. It was back to the same old deep hip joint aching dull constant pain, and the popping grinding concerto.
At 12 weeks I graduated to a cane, and was cleared to move back to my apartment in San Francisco, but not back to work. I was encouraged to rest, I think in hopes that the right side pain would start to subside. It did not. From January – April 2009 I was in a holistic all body approach physical therapy regime of swimming three times a week, PT Pilates twice a week, a PT Feldenkrais method session once a week, massage, acupuncture, and Chinese herbs. The combination of all these helped me manage my pain, as well as strengthen my left hip, but it did not stop the constant, dull ache in my right hip. [More on those alternative therapies later, as I believe in their ability to get PAO patients back to a “normal” balance after being imbalanced before surgery and during recovery] For me, though, the problem was much deeper in my right hip, and I began to switch the cane from my right hand to my left. Walking came gradually, as I began to feel more unstable and rickety on my right hip.
Finally in March 2009, 6 months after LPAO, Dr. Santore declared that I was HEALED! on the left side, but that we were going ahead with the RPAO. I knew in my heart of hearts that this is what would happen. I would have had a RPAO 2 years ago if he would have done it. His resistance to this surgery was because of how mild the dysplasia is, especially compared to my left hip, which was much worse. I don’t know the specific degrees. But after an arthroscopy, a PAO and all the shit in between, I was never free of pain. Never.
So here we are. July 8th 2009, and I go into surgery tomorrow morning at 5:30 am. I am so ready; I would let them come to my house tonight to do it if they would. Just fix it!
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