14 year old Protrusio, Bilateral Hip Resurfacing
Dr Jim Powell
Calgary, Alberta, Canada

In Kaibree's own words:

As far as I can tell, I was a perfectly normal pre-teen. I loved hanging out with my friends, playing sports and bugging my older brother. Needless to say, I never expected anything like this to happen to me.

My story begins in November 2005 when I was thirteen years old. For quite a few months I had been complaining of stiff hips at dance class; my mother advised me to stretch more. Then one day, only a month after my thirteenth birthday, I was playing in a volleyball game and felt a sudden pain in my hip which I had never felt before. Concerned, my mom took me to my family doctor. They took several x-rays, and my doctor was shocked by the results. It was obvious my hips weren’t completely normal, that there was something different about them.

In December 2005 my family doctor sent us to Edmonton where we met with an orthopedic surgeon. I was diagnosed with Protrusio Acetabuli in both hips; basically, my hip sockets were very deep and my femoral heads were migrating inwards. The doctor told us that some Protrusio patients discover the disease in their teens, but that it doesn’t usually become symptomatic until they are 30 or 40 years old. He told me to continue all activities as long as the pain was manageable. The doctor said the only treatment available would be THR, and not until I was much older and had finished growing. He advised us to come back in a year.

I didn’t last a year. By June 2006 I had started feeling pain regularly. I had developed a limp and I was quickly losing my range of motion. We went to see the orthopedic surgeon again. After looking at some new x-rays, he said that my case of Protrusio seemed to be much more severe than most cases, and my hips were deteriorating very quickly. He didn’t have much experience with the disease, but he told me to cease all sport activities, and stated to us that he could offer no surgical solution; that no surgeon in the world would operate on me until I was older. Once again, he told us to come back in a year. I was devastated by this news.

At this point we were getting frantic. By the beginning of August, I had gone from walking with a limp to using a cane, then using two forearm crutches and then to using a wheelchair. When I entered the school on our first day back in September 2006. I was in a wheelchair. I was embarrassed and ashamed; the other students stared. I loved sports, especially volleyball, and instead of playing I had to sit on the sidelines and watch. Most students avoided me in the hallways, as if they were afraid of me; some were unnecessarily helpful, offering to push me through the halls though they knew I could manage on my own. Though I know they meant well, it hurt to think that they took pity on me. I decided then and there that I needed to be as independent as possible in my chair. I helped coach the volleyball team instead of playing and I traveled to all the games as a team member. I worked out as much as possible, in the pool and weight room. But even movement in the water became too difficult for me and I could only stand for a few minutes. My legs would no longer work to swim. My dad had to build ramps for the steps in our house so I could get around in my wheelchair.

During this time of rapid deterioration mom then took over. She became consumed with my situation and set out to find some help for me. She searched the internet for answers and with the assistance of our family doctor got a referral to a new doctor in Calgary. He is a pediatric orthopedic surgeon, but when he saw my x-rays and reports of my deterioration he referred us to Dr James Powell, another orthopedic surgeon. He knew Dr Powell was familiar with the disease and the newest hip surgeries. We first saw Dr Powell in September 2006. From the very first he treated me extremely well; we knew from that first meeting that he would do everything he could to get me walking again. He cared about me as a person as well as a patient.

Dr Powell wanted to get me a surgery date as soon as possible. The longer we waited, the more movement I was losing. We explored the possibilities of the Gantz Periacetabular Osteotomy, which would buy me some time and let me keep my own bone longer. Sadly, we discovered that I didn’t have enough cartilage left in my hips for that operation. Our next option was a Birmingham Hip Resurfacing.

It took two months to get a surgery date. They hesitated to let Dr Powell give me my BHR’s. In Canada they are cautious to give BHRs to women who will in future become pregnant, because of the effect metal ions could have on any future pregnancies.  Dr. Powell arranged for us to see a geneticist, and after much deliberation he was able to convince the right people that BHR offered the best solution for me. Eventually, Dr Powell secured a surgery date for my first hip: November 24, 2006.

We arrived in Calgary a week before my first surgery, enough time to get settled. By now the pain was so severe that to go from a sitting to a standing position took me 45 minutes; sometimes it was so painful that I would be reduced to tears, and often this happened in the middle of the night. Then I had to stop taking the pills which warded off my hip pain. For the week before the surgery, I gave up entirely on standing up; instead, I stayed in my wheelchair all day. As the pain grew worse, so did my nerves.

The morning of my first surgery, I was surprisingly calm. Though I knew that I had a couple of extremely hard days ahead of me, I knew that in the long run it was better this way; soon I would have no pain!

When I woke up in the recovery room, the whole lower half of my body was frozen from my epidural. Even so, the pain was pretty bad. A week of really hard days followed the surgery. I did physio therapy every day, but I soon realized that though the incision pain was still really bad, the pain inside the joint had completely disappeared! I wasn’t allowed to start walking, because my bones were very soft and Dr Powell was afraid they might fracture if they bore my weight. I was also very tiny, I was 5’2” tall and I weighed approximately 92 pounds. My second surgery was two weeks after the first. By the night before my second surgery, my newly operated leg had become my stronger leg; it was my old hip that gave me trouble.

My second surgery on December 8th also went smoothly, at least until I woke up. When I woke up in the recovery room, somehow my epidural hadn’t started working. The pain was intense, but soon the nurse in charge got it working and the pain evaporated. The surgery was followed by about five hard days. A week and a half after my second surgery, an ambulance transferred me from the Foothills Hospital to the brand-new Alberta Children’s Hospital. I still wasn’t allowed to weight-bear, but with all the bed physio therapy I gained a lot of movement and soon I was allowed to start pool physio. When I was in the pool I was allowed to stand up and walk for the first time. I looked up at this point and saw my mom crying. We had all been through the wringer. This was very emotional.

I had thought that I was going to be in the Children’s Hospital for Christmas, but my doctor decided to send me home. I got home on December 23rd, perfect timing! I was able to spend the Christmas holidays with my friends and family, and I went back to school in January still in my wheelchair but with a much happier outlook. I did physio therapy three times a week and pool therapy twice a week for a long time; eventually we stopped doing pool physio and I started swimming with my local swim club. On January 17th we met with Dr Powell again in Calgary, and he helped me to my feet as I stood for the first time. This was so exciting! When we got home my dad got rid of the ramps.

I stayed on crutches for about a month, then a single cane for another month. Soon, I was able to stop using the cane as much, and then I dropped it for good! The number of visits to the hospital diminished and soon I was only doing physio therapy twice a week, then once a week.

Which brings me to the present. I am now 11 months post-op! I’m walking fine, without a limp, and I can run and do most things, as long as I don’t experience any pain. I have had a bit of a problem with my iliopsoas tendon, but it has mostly cleared up. I only see my physio therapist every few months or so for some fine-tuning, and Dr Powell gave me the thumbs-up to play on my high school volleyball team. For the last month I’ve been playing volleyball with my team four times a week, as well as going to tournaments every second weekend. I haven’t experienced any pain, other than sore muscles here and there. I will also be doing lots of swimming, and possibly some swimming competitions in the future.

I am free. Free of the pain, and free to walk and run and jump. My restored mobility is all thanks to hip resurfacing and Dr Powell, who not only fixed my hips and gave me my childhood back but also cared about me as a person. Without him I would still be in a wheelchair, I would still be suffering from hip pain, and I would still be watching from the sidelines.

December 2008
I am now two years post-op, and I’m still doing very well. My x-rays, taken last April, showed a radiolucent line, which could indicate some loosening. My most recent x-rays didn’t show any further change, but Dr Powell is still monitoring me every six months. Despite this possible loosening, I’ve been very active and I have been experiencing very little pain. Since we found out about the radiolucent line, I have had to be more careful as far as playing competitive sports, running and jumping. Even though playing on my high school volleyball team is now not such a good idea, I’ve been coaching the younger teams and it’s a very rewarding job. Swimming, coaching competitive volleyball and baseball, playing some recreational sports, and participating in all the usual teenage activities are part of my day-to-day life. Most of the time, I don’t even notice that my hips are any different than anyone else’s. I do feel that I have to be more cautious than the average teenager or the average hip patient, because I’m only sixteen and these hips have to last me a long time. I know I’ll have to face surgery again, but when it comes it will be a lot less of an ordeal than last time. I will never be crippled again.

Below are posts from Kaibree's Mom seeking information for her daughter:

Sat Feb 2, 2008
Re: [surfacehippy] 14 year old and AVN, BHR or not, HELP????

Hello, I am Kaibree's mother. Kaibree was successfully resurfaced in Canada last year. She had bilateral hip resurfacing done. She had a severe hip condition called Protrusio Acetabuli and she could no longer walk. She was in a wheelchair. Today, 14 months later she lives the life of a perfectly normal teenager. She is pain free and happy. I would recommend that you contact Dr. DeSmet in Belgium and/or Dr. Bose in India and of course there is Dr. McMinn in England. All of them will give you an opinion as to what is the best course of treatment for your son. All of them have resurfaced people with AVN. If you wish to contact me to find out more about resurfacing in very young people please do not hesitate to. Kaibree and I would be happy to help you in any way we can. It is a different situation when you are extremely young as our children are. Good luck, Cherilyn (Kaibree's mom)

Thu Nov 29, 2007
Kaibree - 14 year old protrusio bilateral hips-one year!

Hi! Kaibree, my teenaged daughter just passed her 1 year anniversary on the left hip, Nov.24 and is coming up to 1 year on the right on Dec. 8. Kaibree continues to be pain free, she just finished her volleyball season at school! She was on the high school team and she has now moved on to swimming with the swim team. She walks perfectly now, has no limp whatsoever and leads a normal life again. This is a far cry from last year when she was unable to walk more than a few steps and required a wheelchair in order to be mobile! Kaibree has taken and passed her driver learners license test and she also is now 15 years old! She is a happy teenager and we are so grateful that she was able to receive resurfacing from a skilled physician. We are hopeful that her case will help other children with serious hip conditions and people with Protrusio Acetabuli know that they can return to a painfree and active life.

Dr. Jim Powell, Calgary, Alberta, Canada
Rt BHR Nov.24/06
Lt BHR Dec 8/06

Tue Aug 28, 2007

Kaibree - 14 year old protrusio bilateral hip resurf update Hello, It has been a long time since I have posted anything about Kaibree's recovery. We are preparing for back to school and as I thought back to this time last year I thought I would share a little information as to Kaibree's recovery. At this point one year ago we were preparing to send Kaibree back to school in a wheelchair. She had been diagnosed with Protrusio Acetabuli 6 months before and she deteriorated to the point of requiring a wheelchair in order to be mobile, in a matter of a few months. Kaibree was 13 years old at the time of her diagnosis and she was 14 when she was given bilateral hip resurfacing in Calgary, AB, Canada. She is now 9 months post op. Her surgeon, Dr. Jim Powell has been fantastic in his care of her. Her recovery has been nothing short of a miracle for us. This summer
Kaibree resumed the life of a normal teenager. She played softball on her team, attended camp and participated in all the activities including hiking, canoeing, and playing games, she tubed behind our boat, she biked and began running on our treadmill (gently and building up slowly), she swam and of course best of all she is pain free! Her plan for this fall is to return to playing volleyball on her high school team and to swim competatively with our swim team. Her recovery has required a great deal of dedication on her part to her physiotherapy and daily exercises. Hip resurfacing has given her back her quality of life. This year when the doors to her high school open she will enter running and confident in her physical abilities. Thank you to all those who have helped her along this path.

Sincerely,
Cherilyn (Kaibree's mom)

Fri Dec 8, 2006
14 yr old protrusio - second hip resurfaced

Hi! Our daughter had her second hip resurfaced today in Calgary, Alberta by Dr. Jim Powell. Her first hip was done two weeks ago and is progressing nicely. We are thrilled and thankful to have such a skilled surgeon in Calgary. Hers is a difficult case and his care has been exemplary. Our daughter has severe protrusio acetabuli and has been in a wheelchair since August so her bones are very soft. She will be non weight bearing for 6 weeks to prevent femoral neck fracture and facilitate healing. She has a long road to recovery ahead of her but we are very positive that she will have a good outcome. If we can ever be of any help to other people, particularily those who are young or have protrusio please contact us. We will post again with news of our daughter's recovery.

Sincerely,
Lynn
Rt and Lt BHR Jim Powell- Calgary, Alberta, Canada

Sat Nov 25, 2006
14 yr old protrusio – resurfaced

Hi! Just a quick note to say that our 14 year old daughter was given a lf BHR yesterday by Dr. James Powell in Calgary, Alberta. She has severe Protrusio Acetabuli and it is bilateral. Our Dr. plans to do the right hip in about 2 weeks or so as soon as she is recovered and feels up to it. She has non weight bearing restriction for 6-8 weeks as she was in a wheelchair prior to surgery for about 3 months and her bones are very soft. The Dr. is very concerned about fracturing as she is also very tiny. We are thrilled that he was able to do a resurfacing and feel very thankful to have such a skilled surgeon as her case is a very difficult one. She is very tired today but happy that the journey to the other side has begun. Thank you to everyone for your support.

Lynn

Mon Oct 16, 2006
14-protrusio acetabuli

My daughter is 14 and has been diagnosed with severe protrusio acetabuli in both hips. In December 05 she was diagnosed and did not have any symptoms. By May she was limping and this summer she went from walking with a cane to being in a wheelchair. She now can walk only around the house with the aid of forearm crutches. We are awaiting surgery dates for either BHR or THR. Have any of the people with this condition experienced such rapid deterioration? Her case is very complicated by the fact that she is so young.

Cherilyn (Kaibree's mom)