Patient Stories
Patricia
Born in 1961, my Bilateral Hip Dysplasia was not diagnosed until age 18 months. I was child #5 for my mother who had to insist on further tests as I wasn’t able to stand or walk. A basic leg manipulation showed no issues. Xrays showed not only dislocated hips but that they were grossly deformed and undersized, pointing in the wrong direction! I was put in traction for some time and then into the body cast, which went from my armpits to ankles and had a fixed rod holding my legs apart. This cast was removed every two months, my legs rotated into another position, X-rays taken and another cast was put on…..for close to 5 years! After that, it was a bar braced between two shoes with the toes cut out, to slowly bring my legs back together. That took six months to accomplish. I still have the ‘rig’ in my office at home, looking at it reminds me to be a good girl and to not take walking for granted, which I never do.
I was not permitted to play with the rest of the kids, no running, jumping, bike riding or roughhousing with my brothers and sisters, but could swim and walk. By the age of 15, I required a PAO on the right acetabulum and the next year the left side had one as well. Both were successful. My right side was always more painful, shorter leg length and had a limited range of motion.
Move ahead to age 29….I moved to the Yukon, Canada. I was working with special needs children at our school and walking was becoming almost impossible due to right side groin pain, limited range of motion and when bending over the hip would lock into place. I simply couldn’t move by myself, and when I did it clunked and popped….I LOVED that the kids thought I was ‘special needs’ and helped me get up and around, taking turns holding me and my cane.
No doctor would touch my hips because of my young age, but I’d heard about an Orthopaedic Surgeon at another province. I found his number and called him directly from my home in the north. He asked me to send him my recent x-rays (those were the days) and called me when he received them. After a long conversation and my history, he agreed to replace my right hip first, three days after school broke for the summer. It was a difficult surgery with adjustments to the prosthetics and my pelvis, but I was back in school in the fall, feeling wonderful and able to walk with just a cane again. Apparently, I had developed Traumatic Heterotopic Ossification (THO) all over the place and needed the removal of bone frequently. He replaced the left hip two summers later along with more excess bone (THO). The femur cracked trying to slide the shaft down inside so a hybrid was used that required glue. He gave me a really good piece of advice. “Wait until you can’t walk anymore at all before you have your liners replaced” Before the time came he was hit by a snowboarder on the ski slopes and died in the arms of his wife of 53 years….! Not long before that he had emailed me from Istanbul to ask how I was making out. Seriously, they don’t make doctors like that anymore. RIP Dr. Charles Sorbie.
On to another surgeon on the west coast who was to do a simple liner replacement and more THO bone removal, followed by radiation to stop it reforming. He opened me up but the prosthetic was so old he didn’t have a liner that fit….so he removed everything and started over. He also moved the acetabulum back changing the alignment. It dislocated 10 weeks post-op while I was getting up from the sofa. Two air ambulance rides, three hospitals and six re-insertions that wouldn’t stay seated and I wake up days later in Vancouver outside the OR, ready to have my incision reopened and the hip put back in AGAIN! It wouldn’t stay ‘in’ so that surgeon removed everything AGAIN and, after some adjustments I am sent home. He said it is never going to be ‘right’ and to be careful twisting, turning etc. No raking, vacuuming, shoveling…. it is only a matter of time before it pops out again.
It goes on and on…but then I start ranting and this isn’t the forum for that. My best advice is what Dr. Sorbie said, plus be absolutely sure of who does what to what part of you. The relationship you have with your surgeon is like a dance partner…if they keep stepping on your toes and pushing you into something that doesn’t feel right, switch partners…get a second opinion and do your research first. Ask lots of questions and make sure you know exactly what is being done and why. AND BE PROACTIVE with your health, not reactive…oh, and one last thing, you are not alone out there.
