Penny

Congenital Bilateral Hip Dysplasia – My Story

Learning to accept my body through various stages of health was (and sometimes still is) the most difficult life challenge I’ve faced. After each hip surgery I would think – yes! this will be ‘the one’ then find myself falling down and in a lot of pain a few short years later. As a teenager, it was difficult to understand the benefit of going through painful surgeries and spending months in hospital to gain only a few years of mediocre mobility. As an adult, I’ve gone from being in so much pain I could barely walk at all to being physically strong enough to hike mountain trails without a walking aid. The freedom I experienced by achieving a level of strength and mobility I was told I would never have gave me a glimpse into the world of ‘normal’ people, and it was both a blessing and a curse.

Today, as long as I remind myself to be patient with myself, take time to exercise and make sure I eat the foods that work best for me, I’m pain free and I’m mobile! I’ve learned to look further than the obvious when it comes to interpreting symptoms, and I don’t accept limitations.

Here is my story.

THE BARE BONES

I was born in a small town in south-eastern Saskatchewan, Canada in December of 1965. I don’t know if anyone tested for ‘clicky hips’ at this hospital – I don’t know if anyone in this small town even knew what congenital bilateral hip dysplasia was in 1965. All I know is that no one discovered I had a severe case of bilateral hip dysplasia until I was nine years old.

I was put up for adoption and went to my Regina family in May of 1966. As a small child, I fell down a lot. My knees were always scraped and bruised. I could sit comfortably on the floor, my knees pressed together, with my feet pointing outward at a 90 degree angle. My parents, not knowing any better, would have me display this ‘double jointed’ feat when friends and family visited. No one knew this sitting position might aggravate an already bad situation. As I grew, my developing limp became more exaggerated and the realization that I was ‘different’ was solidifying in everyone’s mind.

In 1974 my dad took me to see his chiropractor. This doctor barely watched me walk through the doorway before he exclaimed: this girl’s problems are way beyond me – she needs a surgeon! There was a radiology department in his office and x-rays confirmed his suspicion – I had bilateral hip dysplasia. The acetabular shelf on the left side of my pelvis was extremely shallow. My femur basically floated alongside my pelvis. The right acetabulum was slightly deeper, but it still only covered a very small portion of the right femoral head. At the urging of my dad’s chiropractor, our family doctor arranged for an orthopedic consult.

Dr. A, to our astonishment, uttered the same words as the chiropractor after viewing my x-rays: this is way beyond my capability! Pointing to the x-ray displayed behind him on the viewing screen, he reiterated what my dad’s chiropractor told us about my condition, but added there was no one in all of Saskatchewan that he knew of that could perform the surgery I needed. He suggested a surgeon in Saskatoon might be able to perform the surgery I needed, but he wasn’t optimistic. He went on to explain that without surgery, there was a high probability that I was looking at living in a wheelchair from the age of fourteen on. Dr. A didn’t beat around the bush. At the time, his matter of fact way of speaking was shocking and terrifying, but eventually I came to appreciate his honesty, integrity and his bluntness.

My parents were deeply concerned and they eagerly accepted help from anyone they believed was capable. The first orthopedic surgery I had was in 1975. A customer that frequented my dad’s hardware store was a Shriner. He arranged for an orthopedic consult through the Shriner’s Hospital in Winnipeg. When we saw Dr. B, he noticed I had cavus foot – a high arch in both of my feet. Tests were ordered to see if there was proper neural and muscular function in my lower legs – which there was. I didn’t walk on my heels or my toes, although I did walk on the outsides of my feet, so it took many years for me to come to terms with and fully understand why he thought cavus surgery was needed when we were all well aware that I essentially had no hip sockets.

Today, there is a much deeper understanding of movement and body mechanics, so I’m not sure anyone would suggest this surgery ahead of pelvic surgery today given the same circumstances. Nonetheless, tendons and ligaments were cut and redirected, bones were reshaped and it did nothing to improve my gait or reduce my developing and increasing joint pain, and I ended up with hammertoe to boot.

Once the casts were off, I spent a few weeks at the Shriner’s Hospital for rehab. The hospital was situated in a beautiful spot on the banks of the Red River. There are a few memories from my time there that linger in my mind, but there is one that stands out because I hear of and have recently had similar experiences all these years later.

As a patient, there is an assumption that all of the various health professionals you work with after surgery know everything there is to know about your condition. It’s simply not true, and it’s not possible either. When I was in training for both counseling and nutrition, we were taught to present ourselves as an authority. This, we were told, helps to instill confidence in the client/patient. The part that was missing from that narrative is there is a difference between presenting yourself as an authority while still maintaining respect toward the patient/client, and being condescending and disrespectful.

I recall a physiotherapist scolding me for using the railing to navigate stairs. With bilateral dysplastic hips, balancing on one leg at a time while going up and down stairs was simply not going to happen. Additionally, the stairwell in the hospital was concrete, and I was afraid of really hurting myself and having to stay here longer if I fell. Today, when I think about this incident, I wonder if the fact that I had bilateral hip dysplasia was even noted on my chart. Years later as an adult, I ran into another physiotherapist who obviously had never experienced physical trauma. Scolding a patient for moving in a way that avoids pain is counterproductive for all involved.

Every year my gait worsened, dislocations became my normal and the pain increased. By the time I was 13 years old my parents knew they had to find someone who could help me very soon. Desperate to get me help, they took me to see a well known orthopod – I’ll call him Dr. C – in our city. Our family physician assured my parents that this surgeon was highly skilled and the only one in the city who would attempt the surgery. He had never performed a Salter’s osteotomy before, but he convinced us he was capable. Surgery was scheduled for the summer of 1980. I spent three weeks in traction and was to remain non-weight-bearing for three more weeks.

Physiotherapy went well once I started putting weight on that leg and I was walking without crutches twelve weeks post op. Initially, the dislocations stopped and there was no more pain. Several months later all three pins snapped in half and started cutting their way to the surface. It was incredibly painful and the entire area around the pins became infected. A few weeks later, I watched as Dr. C, using a local anesthetic, removed the broken pieces that had cut their way to just below the surface. The bottom pieces were left in the pelvis and remained there for several years until they were removed by a different surgeon in a subsequent surgery.

My parents knew the right side still had to be corrected, so in 1982 Dr. C attempted another Salter’s osteotomy – this time using threaded stainless steel pins that were quite a bit longer. I spent six weeks in traction and two more on complete bed rest for a total of 8 weeks post op. The thinking at the time was to give the bones ample time to completely heal before I tried to move. Isometric exercises while on bed rest were not common practice at that time, so there was considerable atrophy head to toe when I was finally allowed up. The pins were removed at twelve weeks before they had a chance to break and cause soft tissue damage. I spent several months in a convalescing hospital where I engaged in physiotherapy twice per day.

Less than one year after the right osteotomy surgery, I started experiencing a lot of pain in my left hip when I walked. Now an adult, I decided to go back to Dr. A to get his opinion about the previous surgeries as well as see what he thought might be causing the pain now. There was no sign of any positive bone growth according to new x-rays despite the osteotomies. The femoral head on my left side had formed a kind of groove on the side of my pelvis. It would occasionally jump out of this groove and we referred to this as a dislocation. I was now suffering from chronic pain in my lower back as well as the entire hip area. Dr. A prescribed analgesics and anti-inflammatories, and encouraged me to ‘wait it out’ as long as I could.

In 1990 a new surgeon who gained considerable osteotomy experience during his residency in Toronto moved to Regina and took me on as a patient. The left hip had become quite painful and needed immediate attention, so Dr. D performed an osteotomy that summer. I was told that I wouldn’t be getting up immediately after surgery, but somehow that information didn’t make it to my chart. A porter came to take me to physio the day after surgery as this was now the common protocol with hip replacement patients. I argued with him telling them that my doctor had told me otherwise, so he checked with the nursing staff who checked my chart and didn’t see any notations. That’s the problem with cookie-cutter protocols and an overworked system – no one stops to listen to a patient – they just blindly follow protocol. The nurses dismissed everything I said and insisted I get up out of bed. A porter took me down to the physio department where the head of physio took one look at me and had the porter take me right back to my room. I was absolutely furious. The next morning at rounds, I made a point of discussing what my course of action was going to be with my surgeon in front of the head nurse, my attending nurse and anyone else that thought they were in charge of my body, so that all of us were on the same page. My left leg was put in a traction sling while I was in bed, but there were no weights attached. The use of a passive movement machine was introduced, and isometric exercises were encouraged while on a 48 hour bed rest. I was instructed to only put my toes on the ground when I stood up, and to sit with my weight on the unoperated side of my butt. Everything seemed to be healing well until I sprouted a major leak. A large hematoma developed just under the incision. Every few hours, the pressure would build up and blood would soak through several layers of heavy gauze. This continued for ten days and prevented me from getting a day pass to attend my grandmother’s funeral. I was released from hospital once the bleeding stopped. Six weeks later I was walking with full wait on my left leg. Twelve weeks post op and still using crutches for support, I returned to work.

One year later, Dr. D. performed another osteotomy on the right side. This surgery went well and there were no complications. A few months after these surgeries were done, Dr. D moved to Nebraska, so all of my follow up was done through Dr. A. A few months later, it felt as though the pins on the left side were working their way up to the surface. It didn’t take much pressure to feel the tip of the pin through the skin, and it felt as though the pins were cutting tissue when I moved. An x-ray showed the pins were exactly where they were supposed to be, so it didn’t make sense to either of us. Dr. A scheduled me in for day surgery to remove the pins. He found a large cyst exactly where the hematoma had been and removed it. I woke expecting a small one inch incision, but found the entire nine inch incision had been reopened. No one in recovery could answer why, so I asked them to leave a message for the doctor to call me. Later in the evening the next day, Dr. A called me at home to explain what he found. The tip of the pins were pressing and scraping on the bottom of the cyst creating pain, and giving the impression they were much closer to the surface.

Unfortunately, these two osteotomies did not work nearly as well as hoped, the dislocations and the pain returned within a year. I was having considerable pain in the left hip and butt area, and it felt like I was sitting on a golf ball all of the time. I was able to get an appointment with Dr. A within 24 hours and we both stared at the x-rays not knowing what to do next. He arranged for a ‘show and tell’ appointment with all of the orthopods at that hospital. No one had any ideas or suggestions for a course of action, so Dr. A suggested I stay home, do as little as possible, avoid stairs, lifting, and encouraged me to stay off the leg entirely and use crutches to get around. Dr. A contacted Dr. D in Nebraska to see if he had any advice. Together they decided the best course of action was to send my entire file to Dr. E – a very prominent orthopedic surgeon in Toronto, ON. Dr. E pioneered a specific type of acetabular reconstructive surgery that was proving successful. He agreed to take me on as a patient and scheduled surgery for the following spring.

In May 1993, an acetabulum was carved out of my femoral head and affixed to the side of my pelvis forming my first real ‘hip joint’. A femoral pin replaced the bone used for the acetabular shelf, and an osteophyte the size of a golf ball was removed from my gluteal tissue. I was told this was the largest osteophyte anyone, including Dr. E had seen so far. No wonder it felt as though I was sitting on a golf ball!

I was up and moving after only 48 hours, but was to remain non weight bearing for six weeks. A few days post-op my new ‘hip’ dislocated, so after a closed reduction in radiology, I was put in an abduction splint and remained in bed for the next 14 days. I was released from hospital one week after getting out of bed and flew back to Regina. Less than a week later, the left femoral head dislocated again. I was taken by ambulance to the ER. As long as I didn’t move, I could manage the pain, but if I moved – even slightly – there was considerable pain. As I laid in a bed in the emergency department worrying about who was going to be able to put my hip back, I overheard an argument down the hall. The physician in charge was yelling at the orthopod on-call who did not want to attempt reduction when he heard it was me laying there with a dislocated hip. All of the orthopods at this hospital knew who I was from the ‘show and tell’ and were aware I had undergone reconstructive surgery in Toronto. The on-call surgeon suggested to the attending that I wait until the following morning, when a surgeon with more hip experience would be available. When I was told this, I was completely willing to wait until morning, but the attending physician insisted I be attended to that evening. The on-call orthopod performed a closed reduction in OR a few hours later.

A large wedge was placed between my legs to keep them abducted. I was sent home a day later with instructions to do as little as possible, remain non weight-bearing and basically stay in bed for the next three months. Being at home was quite the challenge because my hip was incredibly unstable, and my house was not nearly as accessible as the hospital. I was terrified to move. I didn’t have a lot of faith in the surgeons I had access to, and I was worried that if something went really wrong, the only surgeon capable of providing proper care was clear across the country. I was concerned about soft tissue damage from more dislocations and I just wanted to get back up on my feet without further drama. Finally, after twelve long weeks of moving from the bed to the couch and back again, follow up x-rays showed the capsule had finally healed properly and I began physiotherapy. It took several months for me to gain enough strength to be able to return to work.

In 1998 I returned to Toronto to have my right side attended to. Dr. E performed the same reconstructive surgery he had done on my left side, but this time he used a slightly bigger component and there were no complications. I flew back to Regina 10 days post op, which was as soon as the airline would give me clearance to fly. I was walking full weight after only twelve weeks and returned to work five months post op. I was really happy my recovery was fast and easy for a change.

Approximately four years after this surgery, I started experiencing a great deal of pain in my right hip. The femoral head was bulging, and it looked and felt like it was about to dislocate. It reminded me of the dislocation shortly after the left hip was done and I became frightened that there was something wrong. The femoral head appeared to be riding along the front edge of the acetabular cup held in only by soft tissue. By this time in Regina, all the surgeons I had seen before had moved to other provinces or to the USA, so I was referred to someone new. I had x-rays and a CT scan, but nothing appeared out of place or broken.

Dr. G had no answers for the pain I was experiencing, but he told me he would contact Dr. E in Toronto to see if he had any insight. Once I saw the x-rays and the film from the CT scan, I knew there was nothing wrong with the structure and dislocation was unlikely. My fears were abated so I turned my attention toward my muscles. It felt like my piriformis (the muscle right in the middle of my butt cheek) was in spasm and somehow pushing the femoral head anteriorly (toward the front). I began going to regular deep tissue massage therapy. After a few months, the bulge went away, the pain was gone and life was good again. A year later Dr. G called me in for a follow-up. He asked me what happened after I saw him last. Apparently, he had dictated a letter to my surgeon in Toronto outlining the pain etc. but the letter was misplaced in his office and never sent. I explained in detail what I believed caused the bulging femoral head and the course of action I took to alleviate it. To his credit, he carefully considered what I told him, agreed it was plausible and suggested we take x-rays to make sure everything was fine. X-rays confirmed everything was where it was supposed to be so away I went.

This was the first time in my life that I had what I considered to be ‘real hips’. I was pain free and completely off all pain relievers. I was exercising regularly, but not gaining any real strength. I was short of breath despite cycling for 30 min three times a week , and I couldn’t’ seem to get my body to move to the next level. My weight was starting to come back down, but I hit a plateau I couldn’t get passed. Being hypoglycemic, I chose low glycemic foods to keep my blood sugar levels stable, and I ate plenty of fresh fruit and vegetables. Occasionally I would experience intestinal symptoms that neither myself nor my family doctor could explain, but they would pass eventually, so we didn’t investigate further. I also followed a low salt, low fat diet and aside from eating yogurt every day, didn’t take any probiotics. I thought I was eating healthy and giving my body everything it needed nutritionally, but eventually I would learn how incredibly malnourished I actually was.

In 2005 I hired a personal trainer with a kinesiology degree to help me build more strength. I decided to let my body determine what I was or wasn’t capable of and disregarded the long list of ‘never do’ I had been given by all the physiotherapy departments. By mid 2006 I achieved a level of mobility no one believed possible.

My distance improved to where I could easily walk a mile in 25 minutes without any walking aids, but my cardiovascular function still wasn’t as great as I thought it should be. My core strength had improved considerably, although my right leg would mysteriously abduct on its own during weighted abdominal exercises. I never did figure out why this was happening. My guess was, and still is, the attachment points for the iliopsoas (hip flexors) must have been repositioned during one of the osteotomies on the right side causing a strange angle of pull in this movement. My legs will adduct as I fatigue when swimming as well.

In 2009 I was hiking long and steep mountain trails in Banff National Park, canoeing on beautiful mountain lakes, and really enjoying the freedom of pain free movement. I even took the gondola up Sulfur mountain in Banff, AB and hiked all the way down! I was self sufficient in a way that I had never been as an adult. Outdoor yard work and shoveling snow in the winter were easy chores for the first time in my life and I was over 40 years old! This new found physical freedom was short lived though. By 2010, my left hip started clunking and the muscles started weakening. By the fall of 2011, I could barely walk a block, and I was in a great deal of pain. I knew I was going to need to see a surgeon.

I had recently moved to Calgary, AB and hadn’t bothered to look for a family doctor yet. My brother committed suicide shortly before I moved and I wasn’t quite my usual self. As soon as the pain started in my lower back, I started seeing a chiropractor and a massage therapist. Together, they managed to keep my pain at bay, but it was clear that something was going very wrong with my left hip. I began to search for a general practitioner. The first doctor I saw told me, when I asked for hip x-rays, that she wouldn’t prescribe pain medication. I’m not sure how she confused the request in her mind, but it was a very clear indication that this was not the doctor for me. I was becoming desperate and knew I needed x-rays. Why, I didn’t just go to the emergency department shows the level of irrational fear I was in. Nonetheless, I had developed a good relationship with my chiropractor so he gladly ordered x-rays for me. The radiologist suggested further testing using a CT scan, so I had to find a GP to order the tests and arrange for a referral to an orthopedic surgeon. Several weeks later, I finally found a doctor who was accepting patients, took the letter in from my chiropractor and the radiologist, and his office arranged for the first CT scan. Several weeks after that, a leukocyte scan was scheduled although no one in this GP’s office could explain to me why I needed this type of scan. A quick google search gave me the information I needed and eased my worries. I now had all the radiology tests I needed and for whatever reason that I cannot explain at all, I had to convince this doctor to issue a referral for an orthopedic consult. The pain I was experiencing was beyond anything I had ever felt, and on top of everything else, I developed a grocery list of intestinal and other seemingly unrelated physiological issues. Routine blood tests showed no indication of disease, but I vaguely recalled an article that I had read several years prior that described several of the symptoms I was now experiencing. I went to the library in search of appropriate books so I could help myself.

This GP was also reluctant to prescribe pain meds, so I was left with over the counter analgesics and anti-inflammatories. There must be some sort of paranoia about opioid addiction with every orthopedic patient because both general practitioners I saw refused to prescribe pain meds.

By May, I was taking 800 mg of ibuprofen every 3 hours for the pain along with acetaminophen every 4 hours. I was becoming sicker, weaker and gaining weight by the day. I put myself on a restrictive diet based on my research, and started taking probiotics to address my intestinal issues. My course of action did improve my symptoms and my overall pain became manageable for a time. By June of 2012 the pain became so severe I could only manage it for short periods at a time. I spent most of the day laying down and trying to remain very still. I booked an appointment with a naturopath to see if there was anything else I could do. I was given numerous tinctures to help prepare my body for upcoming surgery.

In late August, I had my first orthopedic consult. The first surgeon I saw looked at the x-rays and uttered those familiar words: this is beyond me – you need to see someone else. He arranged for me to a surgeon who specialized in difficult hip reconstructions. Six weeks later I met Dr. H, an extremely gifted orthopedic surgeon. He explained that posterior migration was common among hip reconstruction patients, that no one knew what caused it, and most importantly, that he could repair my damaged hip joint.

During this discussion, the pieces as to how and why I developed a severe imbalance in intestinal tract became obvious in my mind. Despite a diet that included plenty of water, soluble and insoluble fibre, I had been constipated for months. Now, I understood. The left side of my pelvis had moved backwards in my body to the point it was pressing on my colon causing an impingement. Fecal elimination was impaired which then allowed bad bacteria and yeast to proliferate. Bacterial and yeast imbalances can cause joint and muscle pain on their own, so my symptoms had been exaggerated. Nonetheless, my suspicions were confirmed and I was thankful that I had followed my intuition and taken steps to reduce the yeast and improve and repopulate my intestinal tract with good bacteria.

Six weeks later, I was in the OR undergoing another full hip reconstruction. Along with more bone grafting I was given a larger acetabular cup component, and a larger femoral head component. This would greatly reduce the possibility of dislocation. I was extremely nauseas after surgery and had trouble keeping anything down. I was never one to react from any kind of medication – anesthetic or pain meds, but this time nearly everything was causing me to vomit. Weight bearing was minimal for six weeks, but once I was able to fully weight bear, I progressed quickly from walker to crutches, and then to cane.

Rehab was challenging because my left hip was now slightly higher than my right, the muscles on the left side had stretched so much from the entire hip moving backwards in my body, it looked and felt as if the left leg was several inches longer. I used regular deep tissue massage therapy and heat to help manage muscle soreness and pain from the rehab instead of taking medications. As I progressed, my muscles seemed to stay tighter than they should have been, but I kept pushing forward anyway. Although the right hip had not deteriorated to the same degree as the left, it wouldn’t have taken much longer before added stress from the new angle of my pelvis to create a problem. After discussing this with Dr. H, we decided the best course of action was to get the right side done as soon as possible. Six months after the left reconstruction, the right side was done.

I was able to put more weight on the right leg immediately after surgery, so getting to the point of full weight bearing didn’t take long. Rehab was going well, but the cumulative physiological and emotional strain on my body was catching up with me. I was exhausted, extremely impatient and frustrated more often than not. I wasn’t able to sleep more than three or four hours at a time, I was chronically anemic from heavy menstrual blood flow, and just as I was finally starting to get around better, I broke my right foot. I was back on crutches and told not to put weight on that foot. Trying to hold the foot up with the weight of the cast was difficult because my hip flexors are incredibly weak, and my already non-existent patience prevented any rational thought. My foot was in an air cast and the pain wasn’t unbearable, so I walked on it a lot sooner than I should have. Consequently, it took a lot longer for the foot to heal than I was emotionally prepared for, so once again I pushed my overall rehab harder than I should have. I really just wanted to get on with normal life. This time, I tore the meniscus in my right knee. You know the saying: healing is taking one step forward and three steps back……this felt as though it set me back 200 steps.

I couldn’t get up and down off the floor, so I wasn’t physically able to maintain any kind of quality hip rehab. There was too much pain to cycle and I was tired of dealing with pain. The little strength I had gained prior to tearing the meniscus in my knee regressed. The waiting list for knee surgery was a little bit over one year. Finally, fourteen months later, I had my knee surgery. Afterward, I had to start from scratch in my rehab and that was extremely frustrating. I was out of patience with my body.

While it’s partly true that my impatience was a major culprit behind my perceived lack of progress, I discovered that there were other physiological imbalances contributing to my body’s inability to progress at the rate I wanted it to, as well as my lack of patience.

Despite my well rounded diet, I had multiple nutritional deficiencies that required very specific supplementation. My hormones were wildly out of balance, and I hadn’t yet identified any food sensitivities. It had become very apparent to me that symptoms overlap, so I needed to address each area that was out of balance before my physical rehab would progress without further damage.

THE MIND/BODY CONNECTION

When you’re born with a condition that keeps you from living the way everyone else does, your personal understanding about who you are gets tied to that condition emotionally, and every ache and pain you feel in your muscles and joints gets tied to the condition physiologically. Avoiding pain, emotional or physical, is natural, but until you learn to separate you from the condition in your mind, you’re going to find yourself in a never ending cycle of pain – emotional and/or physical.

I believe we come into every life with everything we need to get us through the challenges we’ve chosen. I was defiant – right from the get go. You can see attitude written all over my face in this picture taken when I was only six years old.

The idea that God gives you everything you need to get you through whatever it is you’ll face in this life was true for me, because I came to this life with lots of attitude. That attitude gave me the grit I needed to get through all those surgeries and deal with all that pain, but that attitude also put me in a lot of situations that I didn’t need to be in. Until I learned how to balance that attitude, I lived in a cycle of misery.

THE MIND CONNECTION

Everyone must come to terms with their personal understanding of belonging, but when you have a birth deformity that clearly sets you outside the norm, your perspectives dealing with belonging in the filing cabinets of your mind will likely be distorted.

I never considered myself disabled. I refused to accept that label, despite it being thrown my way for most of my life. I certainly couldn’t do things that other kids could – I couldn’t run without falling down, play sports, or dance like other people, but I had my own gifts. I also came into this life with an enquiring mind that was eager to learn, and luckily for me school was easy. I loved to read, and I had a natural talent for music. My parents enrolled me in music when I was five years old – long before anyone thought of me as having a disability.

By grade 3 though, it became apparent that I wasn’t going to be able to keep up with the other kids. Before that, I was able to participate in various physical games like dodge-ball, go swimming and even ice skating with my class. By grade 5, when my class played baseball, I would swing the bat and someone else would run for me. At that age, everyone is learning the rewards of competition, so I was always last to be picked for a team. The thing is, I wouldn’t have picked me either as a ten or twelve year old had I been physically capable because the reward of winning exceeds compassion or even pity at that age.

I remember an outdoor ed trip in grade 7 that was particularly emotionally traumatic. Our class went canoeing. Each of us was partnered with another classmate but I couldn’t walk and carry the canoe at the same time. I remember the teacher becoming very frustrated with me. He began screaming at me and I was humiliated in front of my classmates. The rest of the trip didn’t go well either. Our canoe tipped and both me and my school mate were drenched. On the trip back to the school, we were both made to sit on the floor of the school bus. Being forced to stay in physical education class after that only made me feel worse. My grit gave me what I needed to suffer it out, but I felt as though I was set up to fail at every class. I didn’t get to the end of that year without becoming full of anger, resentment and bitterness. It didn’t improve the next year either, because no one clued in to or even bothered to ask me why I was so angry. I was punished by the teachers for having an attitude, and ostracized by classmates.

The file that started out in my LOVE cabinet that said “I belong here” had moved to my FEAR cabinet and was gathering hundreds of filters. My defiant attitude was attached to that file and the initial conclusions that said I belong, was rewritten to say “I don’t need anyone – I’m just fine on my own”. Later on, when people reached out and tried to help me, I perceived it as pity and I was instantly offended. This was one of the many mind files that created all sorts of ongoing conflict in both my personal and professional life.

While one mind file that had to do with belonging was creating division between myself and other people, there was another file gathering lots of data. This file was labeled: ‘Where do I belong?’. This was the beginning of my life journey to understand where I fit in. I researched belonging from a mythological, philosophical and Spiritual perspective. Eventually, I was able to blend the two files together and find inner peace and balance.

THE BODY CONNECTION

Growing up with different levels of physical pain teaches you to listen to your body in a way that people who have never experienced illness can’t. I was very fortunate to have surgeons, general practitioners, physiotherapists, chiropractors and nurses along the way who were willing to spend a great deal of time with me, teaching me about my body long before I ever began formal studies. I was also very fortunate to have had doctors who understood and were incredibly receptive to me being an active participant in my overall health, but I’ve also run into several physicians, nurses, physiotherapists, and other health care workers who were disrespectful, arrogant and unwilling to be a co-healer.

While not every person does whatever they can to help their body heal, my father encouraged me to take ownership and be responsible for my body. I learned to apply the physiological science I learned to my body through analyzing my symptoms. This allowed me to provide my doctor with very specific information that helped us determine together, the best course of action, if any, for me.

Most health care professionals – regardless of their discipline – have never experienced illness in the same way that the people they are helping have or are. I learned the hard way to trust my instincts when it came to making health decisions, because making decisions when you are in excruciating pain, fearful that you’ll never walk again, and stressed in every way imaginable doesn’t usually end well for anyone.

Our bodies are complex structures. Every part communicates with another part – beginning at the cellular level and extends outward. This communication is an important indicator of the state of a person’s overall health. Symptoms are the body’s way of alerting our mind that something isn’t working properly. Both conventional and alternative (or holistic) medicine looks at a symptom as an indicator, but the holistic model takes symptom assessment several steps further before offering a course of action. As I mentioned before, symptoms can overlap so it’s worth your while to consider all possible causes before choosing a remedy. Often, when one imbalance is addressed, it will bring into alignment and balance other body systems that were affected. Sometimes there will be natural solutions – like adjusting your nutritional needs, working with a qualified personal trainer, or getting massage or acupuncture to help with pain, and other times you’ll need to take a more conventional approach.

Achieving optimum health after multiple surgeries takes dedication to your health and know how. In Canada, the conventional model – as it applies specifically to congenital bilateral hip dysplasia – puts the patient in contact with an orthopedic surgeon through a referral from a general practitioner (GP). The GP may or may not have a solid understanding of hip dysplasia, and may or may not have experience dealing with this type of after surgery care. The surgeon isn’t necessarily looking at, or even interested in other symptoms that you are experiencing that might impair your body from recovering from orthopedic surgery because that’s not his/her job. Their job is to perform surgery and they are highly skilled at doing just that. Following surgery, if you are given a referral for physiotherapy, there is a limited number of sessions covered by our universal health care, and those sessions will only address the muscles surrounding your hip. If you want to achieve a higher level of function, or if you developed upper back, shoulder, arm or neck strain as the result of using a walker, crutches or cane pre and post op, you will have to pay for further sessions on your own unless you have insurance coverage through a private plan.

People are not infallible, and health care professionals – both conventional and holistic are people. They make mistakes like every other person on this earth, and they are limited by their practical experience and their willingness to think outside the box. A text book can only teach you the theory. It takes practical application to become competent in something, so if a health care provider has not encountered a particular ailment, how could they possibly have an answer? That’s why it is so important to listen to the signals your body is giving you, and to listen to your internal guidance when it comes to choosing the best course of action for you to achieve optimum wellness.

When you have a condition that takes up such a huge part of your life, the tendency to attribute every ache and pain to that condition is commonplace. We get used to certain aches and pains, and when we believe we know what the cause is behind them, it’s natural to dismiss them. The thing is, our bodies are more than just our skeletal deformity, and the surgeries that we’ve had to correct or even address that deformity put added stress on other parts of our body.

Our body is made up of several systems that are all interconnected. The skeletal system is only one system, but it’s the one we who have skeletal deformities tend to focus on. Pain medications, multiple rounds of antibiotics, physical and emotional pain and trauma affect our nervous system, our intestinal system, our endocrine (hormonal) system, our digestive system, our lymphatic system, and our cardiovascular system. Ultimately, every system in your body will be negatively impacted after multiple surgeries, but with the right combination of natural and conventional treatments, it is possible to find your way back to optimum health.

Here are a few of the things I’ve learned from deciphering my own various levels of aches and pains.

Obviously, everyone who has hip dysplasia, regardless of the degree, will suffer from low back pain. Some of this pain is the consequence of biomechanics – because we all limp – but low back pain can also be an indication of other issues such as intestinal imbalances, digestive imbalances, endocrine imbalances, and a clogged lymphatic system.

Digestive imbalances:
Underactive or overactive stomach – chronic pain keeps our bodies in a state of fight or flight. Combine that with a high use of pain medications, it only makes sense that the cumulative effect will create havoc with our digestive system. This contributes to lower back pain and a host of other symptoms.
Common symptoms are:
– Heartburn
– Acid reflux
– Excessive gas, belching or burping after meals
– Bloating
– Bad breath
– Feeling tired after eating
– Stomach pain after eating
– Lower back pain
– Burning sensation in gut
– Feeling full for hours after eating
– Hungry a few hours after eating
– Frequent headaches
– Constipation
– Poor concentration
– Migraines
– Oily skin – especially on nose and forehead

Intestinal imbalances:
Common overlapping symptoms are:
– Extreme fatigue
– Pain in pelvic area
– Repeated bladder infections
– Abnormal muscle aches from exercise
– Pain in back, thighs, and shoulders

Hormonal imbalances:
Chronic physical stress and emotional stress related to pain, frustration, and unresolved resentments related to our physical challenges take a toll on our adrenal system which will, if untreated, create an imbalance in several of our hormone levels.

Nutritional deficiencies:
The fuel our bodies use to maintain a heartbeat, breathe, think and move is made up of various nutrients that we obtain primarily through food. When our bodies suffer trauma, both emotional and physical, there is a higher demand for all nutrients. No one could eat enough food to provide their body with the amounts needed to replenish depleted stores.

It’s important to work with a qualified health professional before trying to tackle nutrient deficiencies or other body imbalances on your own. Listen to your gut instinct when choosing to work with any kind of health professional and remember that you have to actively participate in your own health.

MOVEMENT

Finally, working through pain following surgery isn’t easy, and it’s important to learn the difference between normal pain (the kind you get after exercising), and abnormal pain. I had to try a lot of different things before I found the right combination that my body responds well to without risking further injury. Swimming, for me, is by far the best exercise because I can do things in the water that I simply can’t do on land. I also do some yoga and I love to hike in the mountains, although now I always use hiking poles for stability and safety.

Thanks for taking the time to read through this post. I hope that you learned something that can help you help yourself.




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  1. cynthia evans says:

    What an amazing story. I am so sorry you were not diagnosed and treated earlier in life. I am a NICU nurse and was looking up Ortlani’s sign and Barlow’s sign which are 2 movements that check for hip dysplasia when I ran across your story. I hope you stay well!

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