My name is Michelle, and for all my life I can remember having trouble with my hip. As an infant, I was diagnosed with congenital hip dysplasia. I was seen at Stanford’s Children’s Hospital and went through the standard course of treatment. At a couple of weeks of age, I was placed in a Pavlik Harness which was unsuccessful. Then I went through a series of closed and open reductions to try to get my hip back in the natural socket. With each surgery, the doctors repositioned my hip, but it never stayed in the socket even though I was placed in a spica cast each time post op. By age 3 after multiple failed closed and open reductions, the doctors and my parents decided to leave my hip out of the socket. While going through all these surgeries was a difficult time for my family, luckily I don’t have any memory of this period.
From age 3-12, I was able to engage in normal activity. I went to school, played sports, and participated in dance. I walked with a limp because my left hip was located higher than my right hip, but it did not cause major problems. However, one day out of nowhere, in 6th grade I woke up to in extreme pain. We went to see my orthopedist and he took x-rays but could not find anything out of the ordinary. We hoped the pain would dissipate, and I was prescribed pain medicine. The medicine was not very effective and soon we were referred to a pain clinic. They too were baffled by pain. However after 2 months, the pain seemed to go away.
In the fall of my 7th grade year, my orthopedist preformed a pelvic and femoral osteotomy. The hope was that his would prevent future pain. I was once again placed in a spica cast, had to use a reclining wheelchair for about 3 months, and then afterwards I went to PT to learn how to walk again. Overall, the pain was managed pretty well, but being in a spica cast as a 13 year old girl is no fun.
In 8th grade, my orthopedist lengthened my left leg in order to reduce my leg length discrepancy. This was extremely difficult for me. The surgery basically involved having the doctor break my tibia on purpose under anesthesia and then place pins and a rod that stuck out of your leg. I had to turn the device 4 times a day and each day my bone is pulled apart 1 mm. The idea is to pull the bone apart because the body will naturally fill in the breaks. Normally, this is not supposed to be a painful process, however, my device was placed incorrectly which led to excruciating pain that the doctors did not believe. They lengthened my leg about 2 inches over a period of about 6 months. The surgery was technically successful but it left me being extremely wary of the medical profession.
In 10th and 11th grade, the hip pain that I experienced in 6th grade returned. Both times the pain came out of nowhere, and it lasted for about 6 months. It hurt to walk, and I stopped going to school because I was in so much pain. I withdrew from my friends and spent most of my time on the couch watching television. I went to see multiple orthopedists, pain doctors, neurologists, chiropractors, acupuncturists, and no one could identify the cause of my pain. I had x-rays, MRIs and bone scans performed. I tried a tens unit and biofeedback and was prescribed a variety of pain meds none of which were effective at reducing my pain. On most days, my pain was stayed at 7 out 10 all day long, and the doctors considered placing me in an inpatient pain clinic to try to manage the pain. Even though my hip was out of the socket (and had been basically since birth), most of the doctors did not think this was the cause. I kept getting referred to different doctors but none of them were able to alleviate my pain or give me answers.
In October of 2002, my life changed when I met Doctor Diab at UCSF. Despite being shown the same x-rays that my previous doctors had seen, he had a completely different interpretation. He told us that it is common for girls in adolescence who have a false socket to start experiencing pain, and he recommended doing a hip fusion to alleviate the pain. At this point, I was 17 and my options were to have a hip replacement, fuse my left hip, or wait and do nothing. However due to the intense pain, doing nothing was not a real option. I had already missed a year and a half of high school and felt completely hopeless.
Ultimately, I decided to have a hip fusion where my left hip was basically cemented and screwed in place. My left hip is fused at angle so while my gait is not “normal” it not as dramatic as you would imagine. I have no movement in my left hip. I decided to undergo this significant surgery for a couple of reasons. After getting second opinions, no doctors recommended getting a total hip replacement for a 17 year old, and I did not want live my life being cautious about putting too much wear and tear on the artificial joint or feel guilty when the hip wore out because I had been active. I also was casted in a fused position before surgery. This allowed me to experience what my life would be like with a fused hip, and it also significantly reduced my pain. Being casted made it a lot easier to move forward with surgery because in essence the test run had proved beneficial.
I had my fusion in May of 2003. The recovery took a couple of months, but my pain was greatly reduced compared to how I felt before surgery. I was able to return to school in August of 2003. The only restrictions my doctor has told me is to not engage in activities that cause pain. About 95% of my pain has been alleviated and I was able to go off to college without any problems. Having my hip fused does present a couple of challenges. Sitting for long periods of time can be difficult. I often like to use a pillow for my back or need to shift positions frequently. I am unable to ride a bike, and I have to pick shoes that I can slip into because I can’t bend at the waist to reach my left foot. Despite some of these inconveniences, I have very glad I had the fusion because it allows me to live my life without a lot of pain. While there are some activities that I physically can’t do because I can’t bend at the waist, the list of activities that I can do is much longer. I am able to swim, run, practice yoga, hike, drive a car, and I teach fulltime, which involves me being on my feet most of the day.
It has now been 12 years since my fusion. I hope that sharing my story provides people who feel as though they don’t have many options with questions they can ask their doctor. A hip fusion is not an appropriate procedure for many people, but for me it relieved my pain and has allowed me to live an independent life. I have been told most orthopedists are no longer trained in performing fusions partially because they don’t make a lot of money compared to hip replacements. While a fusion will definitely limit your range of motion, there is no expiration on it as opposed to replacements. My orthopedic troubles have had a great impact on my life, and I hope you are able to find a doctor you trust, who listens to you, and is able to help you live a pain free life.
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