Monday, January 28, 2013

Doctors Don't Yell At Their Patients...Oh Yes They Do!

June 2006

This really can't be happening is all I thought to myself. I had already had surgery to correct damage in my right ankle and right knee; I couldn't have possibly damaged my right hip too. At first I was in denial that something was wrong. I would go to physical therapy and push through exercises that were very painful. It finally got to the point where I had to tell my physical therapist. We tried working on less strenuous exercises but it didn't change anything. My physical therapist once again told me to go back to the orthopedic.

When I went to the doctor, I was more embarrassed than nervous. I knew it sounded crazy to go in and say my hip is giving me trouble. I was now 17 years old and always attributed hip pain to older people. As I expected, my doctor couldn't believe it. As I sat on the examining table he asked me what my symptoms were. I told him I had sharp pain when I sit, a constant nagging deep pain, and it felt like my hip would shift out of place when I would walk. He told me he couldn't imagine me injuring my hip. I then reminded him that nobody thought I could have injured my knee either and that resulted in surgery. You could feel the tension in the air. My mom was getting aggravated. She started acting like a drill sergeant. She looked at me and said, "You stand up here." She then looked at the doctor and said, "Now you, come over here and examine her when she moves her leg." Well, needless to say that got everyone's attention. The doctor started examining my hip and said there's nothing wrong with the front. I said you're right, it's the back that is problematic. He went on to say that's just butt pain. I told him, well then I guess that's what hurts. I then asked if I might have torn the labrum (cartilage) in the back. He didn't think so. Not quite sure as to what was going on, the doctor ordered an MRI arthrogram.

It was the first time that I had ever had an MRI arthrogram; I didn't know what to expect. A needle is inserted in the front of the hip and the doctor pushes dye into the joint with a syringe. More than experiencing pain, it was more an awkward, full, heavy feeling with a lot of pressure. A few days after the MRI was done, the doctor called my mom. He said, "You're not going to believe this, because I can't believe this. Megan has a detached posterior acetabular (ass-a-tab-u-lar) labrum." Easy terms: the cartilage that lines the back of the hip socket was torn away from the bone. The doctor continued to tell my mom that he had already talked to his associates and none of them deal with this injury. What do you mean no one handles this injury??? He told my mom that he knew of one doctor in Chicago and that we should go there.

Of course when my parents called to schedule the appointment, the doctor was booked out 2 months. Since I had no other choice, I waited until August. On the phone, my parents were told the doctor already read the MRI report and said I would need surgery so they should schedule a date. Tentative surgical date is set for the end of August.

August 2006

First off, to this day, this is one of the most arrogant, and disrespectful doctors that I have ever met. I do not think they taught him bedside manners in medical school. When the doctor walked into the room, he said, "Good news, you don't need surgery". The look on my face, as well as my parents, was probably priceless. I looked at the doctor and said, "What do you mean I don't need surgery? The labrum is detached." He then proceeded to put my films up and tell me that if I were to have a labral tear, it would be here. He pointed to the top RIGHT of the film. When I asked him what am I supposed to do, he got up and said let me examine you. I laid on my back as the doctor picked up my leg and started jerking it around in every direction possible. The pain was insane. He then began to tell me, my hip is fine, there is no tear, and I'm young, move on with life.

As I laid there trying to hold back tears, he proceeded to tell me to go walk in the hall. As one would expect, I was limping. He then told me to walk on my tiptoes which was very hard to do, due to the ankle and knee surgery. The next thing I knew, the doctor literally starts yelling at me, saying "Stop limping! There's nothing wrong with you!" In my head, I was panicked. "Oh my gosh. This can't be happening. I am being yelled at for limping? He thinks I'm faking this. Not again. Why do doctors think just because I'm young I'm making this up??" When the doctor was done yelling at me, he then looked at my parents and said, "You need to yell at her every time she limps! Put her in water aerobics to exercise her hip!" At that, the doctor got up and left. My parents and I sat there frozen, unable to speak.

The 3 of us were shocked, dazed and confused. We gathered up our belongings and left their office. In the car I told my parents that the doctor is wrong. I am blessed to have parents that believe every word I say and don't think I am over exaggerating anything when I am injured. During my soccer playing days, I took some really hard falls. I would always keep playing unless I knew there was something seriously wrong. Of course the last thing I wanted at this point was another injury but I had learned to know my body really well and my gut was telling me there was a problem.

In the car I was crying. I was beyond mad and I had, had enough of dealing with doctors. My mom turned around, and looked me straight in the eyes and said, "Don't worry we will figure this out." She took out her cell phone. I asked, "Who are you calling?" She said, "The radiologist where you had your MRI done. I want them to reread your films." Genius! Why didn't I think of that? My mom talked to the radiologist directly, and explained everything that had just happened. She was told that he would personally reread my films and call her back. Shortly thereafter, the radiologist called and said, "All 3 of the radiologists from this facility reread the film and are in agreement that there is a detached posterior acetabular labrum." He mentioned the view number and the location and then proceeded to ask my mom if the "super-specialist" even knows how to read a film because the detachment is right there."

I cannot explain the emotions that were flying through the car in that moment. We had just waited 2 months (living with pain) waiting for an appointment to see the "super-specialist". We had just spent a lot of money to see him. We had just been yelled at, and we were told he was the only doctor in the area that could fix this problem and now he is telling us there is no problem. Now what were we supposed to do? We were back on our own to figure out what to do and where to go for treatment.

Friday, January 25, 2013

I Doubt You Injured Your Knee...Wrong!


My knee, my knee, my knee. The nurse thinks I'm confused. She tells me that I had ankle surgery, not knee surgery. I tell her I know that, but right now I have no feeling in my ankle and my knee is killing me. She pushes pain medication into my IV and tries to make me comfortable. As the nerve block wore off on my ankle that day, so did the pain in my knee. The pain in my ankle was excruciating, therefore masking the pain I had in my knee. It was not an easy night in the hospital. As if hurting from the surgery wasn't enough, I had a bad reaction to the general anesthesia making it very hard to breathe. I developed strider. Every breath was short and raspy. My oxygen intake was low. I had on an oxygen mask and it wasn't working. The nurses had to give me a shot of epinephrine which caused my heart rate to go insanely high. It felt like my heart was going to beat right out of my chest. Luckily, the one shot of epinephrine opened up my airway, and I was able to breathe normal again. To this day, I never want another shot of epinephrine.

Before I left the hospital the next day, I told the nursing staff the top of my foot was burning. I was told the dressing was probably wrapped too tight. So before I left, the dressing was loosened. For the next week, I watched a lot of movies, worked on homework and tried to recover. The top of my foot was still burning. As my mom usually does, she takes things into her own hands when she thinks something is not right; so, she called my family doctor. He prescribed me antibiotics just in case I had an infection. Good thing! The next day when I saw the surgeon, he took the dressing off to assess my ankle and to his surprise, the top of my foot was infected. I had cellulitis; a type of bacterial infection on the skin. Luckily we caught it early, and I was only on antibiotics for 7-10 days (I have a scar from that darn infection). For the next 6 weeks, I was on crutches and in a cast.

The reality of everything I have been through the past 5 months sinking in
Come the beginning of April, I was transferred into a walking boot and was allowed to slowly get off of the crutches. I was sick of being on crutches and lugging my backpack around, so I was thrilled to hear this news. I was so happy to be heading in the right direction. Things were finally looking up for me. I was progressing in physical therapy and everyone is confident that fall is a realistic goal to set to return to soccer.  

Attempting to play soccer while on crutches
Life sure did look a lot different for me than your average 16 year old. I basically lived at physical therapy and doctors offices. I couldn't drive because the damage was on my right leg. I relied on my parents tremendously. I learned that even though I was injured and didn't feel well, life still goes on. There are still homework assignments, projects, tests, and quizzes that I am responsible for that need to be done. Being injured and needing surgery is not an excuse to disengage from life. At the end of the day, I am the one who has to be responsible and get my assignments turned in on time. Even from missing a lot of class, my grades got better because I made it my "job" since I wasn't able to hold a regular job. It was extremely hard, but I needed to feel like I had some sense of control in my life. I also needed that sense of control because things didn't look up good for long.

As physical therapy progressed, and we tried putting the crutches to the side to work on weight bearing exercises such as walking, squats, balancing on one leg etc. all of a sudden the knee pain I had when I woke up from surgery returned. I thought to myself, this couldn't possibly be happening. I've had enough of being injured; all I want is to get back to "normal". Since my right knee kept swelling by the end of every pt appointment, my physical therapist advised I go back to my orthopedic and have my knee evaluated. So off to the doctor. Again.

I saw my orthopedic a couple weeks later. My ankle was doing great. Yay! However, when I told him I was having sharp pains in my knee, my doctor didn't think it was at all possible to have injured it. He kept trying to tell me that my knee was hurting probably because of my ankle. I wasn't buying this reason. He then went on to imply, I was saying my knee hurt in order to get pain medication from him. Are you kidding me?!? Pain med seeking?? For one, I had medication leftover from my ankle and two, I feel awful on pain medication. Why in the world would I make something up to get medicine I don't feel good on? It was the farthest thing from the truth. Since I wouldn't drop the issue, and kept being persistent that there was something more going on, he told me to see his associate who specializes in knees and dismissed me from his care.

When I went with my mom to see the knee specialist, he initially didn't think there was a problem. I told him I wasn't able to walk without using at least one crutch. I would swell after any exercise, and something was in the joint causing my knee to lock. He decides to order an MRI. Well, would you imagine that. The results showed there was reason for my symptoms. This means back to the operating room for surgery. My patella (knee cap) was being pulled out to the side because the tissue was too tight so the doctor performed a lateral release. There was also an enlarged plica (swollen tissue) that was getting caught in the joint which caused my knee to lock, so that was removed. Luckily, this surgery wasn't nearly as invasive as my ankle. As one could imagine, when I ran into my ankle doctor at the office after knee surgery, I gave him an uncomfortable stare right into his eyes and he put his head down and walked into a room without even saying a word to me. I think his ego dropped a few points that day because he knows he was wrong. Anyways, I wore a knee immobilizer for 2 week but began physical therapy 3 days after surgery. Physical therapy absolutely sucked that soon after surgery. I worked really hard and was off of crutches by the end of June. Success.

I didn't know it then, but the "impossible" medical journey had begun. As I continued going to PT, I found I couldn't do all of the exercises due to sharp pain in the back of my right hip. It turns out when I landed from that jump back in September, I damaged my right ankle, right knee, and right hip all at once. Since I wasn't allowed to put any weight on my ankle for so long I never knew I injured anything else until physical therapy started. It was now only a matter of time before going to the orthopedic to figure out what was wrong with my hip. Now the real fun was to begin because the injuries that were soon to be discovered were certainly rare and bizarre.

Monday, January 21, 2013

Would Someone PLEASE Fix My Ankle

Sept. 2005

As I watched the nurse jog towards me with the wheelchair, all I could think was thank God. As we rushed to the nurses office I kept my head down so nobody would see me cry. Finally, we arrived in the office and I layed on the bed as the nurse put ice on my ankle. The nurse left to call my mom and all I could think in that moment was why in the world did I jump to catch that football. It was automatic regret. The nurse came back and told me my mom was on her way. She told her that I sprained my ankle, that an ambulance was called and continued to tell me how my mom didn't think it was necessary; she would drive me to the hospital. I chuckled to myself because I knew there was no way she would get me to the hospital in her car. A few minutes later, I heard my mom. She took one look at me and said an ambulance was a better option.

As the paramedics got me all buckled up on the cot and wheeled me to the ambulance, they gave me a shot of morphine to help with the pain. It did nothing. In the ambulance, as more pain medicine was being injected into my IV, the 2 paramedics started taking bets. They thought for sure I broke my ankle. Surprise! After I was wheeled into the hospital and had an x-ray, it showed there were no broken bones. The ER physician wrapped my foot up and gave me something that would change my life forever. Crutches. Little did I know, I would end up on them for the next 9 months straight.

The next day I saw an orthopedic who said I would be back on the soccer field in 6 weeks. I then had an MRI done which showed there were no tears, just a lot of swelling. I was placed in a walking boot, began physical therapy the following week, and used crutches as needed. For the next 2 months I went to physical therapy 3 times a week and was stuck using crutches because I could not put any weight on my heel without having terrible pain. The rubber on the front sole of the boot was starting to wear off from "walking" on my toes. At the next follow-up appointment with my doctor, he told me he didn't know what was wrong with my ankle. Then with a voice like a magician ready to pull a rabbit out of his hat, he says to me, "I wish I had a magic wand to wave to fix you". Good grief, I didn't need drama. I needed someone to fix my ankle. His solution was to dismiss me from his care without any suggestions of what to do next.

During this time I was attending school and watching soccer from the sidelines. I was so lost because the sport I loved and played several times a week was taken away from me. I also lost my social support since most of my friends were involved in athletics and I could no longer play. It was a very hard time. I felt like I had no control over what was happening to me. My mom had finished treatments for her breast cancer the year prior, and told me, "Sometimes we can't control what happens to our bodies, so take control of the things you can". From that day forward, I made that my mantra. I threw myself into my academics, learned to cook, and took charge of my own health and began researching ankle injuries.

In the meantime, what am I supposed to do now? I've been dismissed from my doctor without being given any sense of direction. My parents called that doctors office everyday for the next week until they finally ended up calling the physical therapist I was seeing to see if he would talk to my doctor. A few days later we got a referral to go see a specialist. When my parents called to make an appointment with the specialist, they were told he didn't have any appointments for 3 months. Waiting that amount of time was not an option. We were told his associate had an opening in about a week at the end of November so we took it.

On the initial appointment I was given a script to get an ultrasound done of my ankle. The ultrasound showed that 2 of my ligaments were torn. When I returned back to the doctor he put me in a cast for 4 weeks. At the end of December when I saw the doctor again, he took the cast off. I was still having a ton of pain in the outer part of my ankle. Since there was so much pain, the doctor wants me to go see a neurologist. I was so mad. It was an ankle injury. I knew it wasn't a nerve issue. Regardless of what I thought, I had to see the neurologist in order to move forward. It was just another hurdle put in my path. When I saw the neurologist in the beginning of January, he thought I might have RSD. RSD is a type of nerve disorder. Since I had some of the symptoms that correlated with RSD such as: swelling & stiffness in the affected joint, "burning" pain and the inability to move the affected joint the doctor suggested this diagnosis. Well, this diagnosis landed me back in a cast once again for 3 weeks. At this point I have been on crutches for 3 months straight. I hobbled everyday to my classes all the while carrying my backpack with all my books because I didn't have time to go to my locker. When the cast came off again, I still had the same amount of pain so the Dr. sent me for a stat MRI.

The MRI this time showed much more damage than the first. Two of my ligaments were completely torn, there was debris in the joint space and I had longitudinal tears in my peroneal tendons. Even with the results in his hand, the Dr still thinks I have RSD so he sends me to one of his neurologists to confirm. I saw the second neurologist and was told I do not have RSD. The orthopedic called my mom with results. He said, "Even though RSD has been ruled out, I just have a "feeling" that she has RSD". My mom "respectfully" said, "Dr. your neurologist ruled it out and quite frankly your "feeling" doesn't mean anything". The doctor then suggested we go to a pain clinic. Thank God we went there. The pain doctors looked at my MRI report and told me, "Of course you hurt because there are torn tendons and ligaments". They asked if I would be willing to see one more doctor. I agreed and they immediately called another orthopedic surgeon. I had ankle reconstruction surgery one week later. During the surgery my surgeon first used an arthroscope to look in the joint and found I had a lot of debris. He then made a bigger incision on the outside of my ankle and found I had multiple longitudinal tears to my peroneal brevis tendon. My peroneal tendons were also subluxating out of the groove so my surgeon deepend the groove, and he also secured my peroneal retinaculum via drill holes to give more stability to those tendons. He also used 2 anchors to reattach my anterior talofibular and calcaneofibular ligaments. It was a very painful surgery and explained why I was never able to get off of the crutches.

It took 5 months from the time of injury to get a diagnosis and have surgery. It was so eye-opening to find out that just because I was a 16 year old girl, doctors repeatedly thought I was being over dramatic, even with my parents assuring them that this was not my personality. When I found out I needed surgery I would have jumped for joy if I could have.  I was so relieved to find out that my ankle could be fixed. Surgery was at the end of February 2006. I knew I wouldn't be able to play soccer in the spring and I started mentally planning out how I was going to get back in shape in time for soccer in the fall. To my surprise however, when I woke up from my ankle surgery, my ankle was numb from a nerve block and all I kept saying to my nurse was I am having terrible knee pain. Surprise, the extent of injury from that fall was yet to be discovered...

Friday, January 18, 2013

The Jump That Changed My Life


As far as I was concerned, Wednesday, September 21, 2005 was going to be just another ordinary day of being a junior in high school and having soccer practice right after. Boy was I wrong! Little did I know, this is the day my life would change forever. It is the day that would be marked in my calendar like a birthday, but rather than a celebration it represents how many years I've been injured. It is the day that shattered my dreams of wanting to go to college on a soccer scholarship. More than anything though, it is the day that marked the beginning of what has now turned into an over 7 year long medical journey of having to travel to 5 different states, and endure 22 surgeries all in the quest of trying to get back to "normal".

Leading up to Sept. 21st, there was a lot of activity. Homecoming had just ended 4 days prior on Saturday. I ran what would be my last 5k to raise money for prostate cancer on Sunday. I had the last soccer practice that I would ever participate in on Monday. Then for the upcoming weekend, I had a soccer tournament in Champaign, IL; I had my driving permit, so I was looking forward to getting to drive there with my parents. So like most 16 year olds, come Wednesday, I was looking forward to the weekend.

Up until last period when I had gym class, I don't remember much of what happened earlier that day of school. In the women's locker room, I remember telling one of my teammates from soccer, that I was really looking forward to soccer practice. I don't know why, but I just had this urge to play soccer so bad. In gym class we were doing football. It was a hot, beautiful, sunny day, so my teacher told our class to head outside to the schools' new turf stadium field and to begin playing flag football.  Being the competitive person that I am, as usual, I was getting really annoyed with the guys in my class because it was very rare that they would throw the football to any of the girls. I remember I was just kind of standing in the middle of the field when the teachers' yelled out 5 minutes left of class. A few minutes later, there was one final throw of the football down the field. I stood there and looked up at the ball as it spiraled through the air. As I watched it come closer to me, I remember standing there thinking, "There is absolutely no way that I will catch that ball because it is way to high. In a split second, the competitive side of me kicked in and I thought what the heck, it's possible. If you catch the ball it will be a great catch and if you miss it then it's no big deal". So, I jumped up as hard as I could and outstretched my arms way up into the air. I watched as the ball went past my fingertips. I twisted my body to the right while I was in the air to see if the ball had been caught. All of a sudden there was this realization that gravity was bringing me back down. I felt so off balanced. Panicked, I twisted my torso to the left so see if anyone was next to me to grab onto. There wasn't. It was too late. All of a sudden, crash. I heard two audible pops come from my right ankle and I felt this surge of pain run through the outside of my ankle. At that, I hear my teacher blow his whistle to indicate class was over in the background. There I sat on the ground with the hot September sun beating on me unable to speak from the shock. I was all sweaty, tears running down my cheeks, knuckles white from gripping the new green turf as hard as I could hoping somebody would realize I am hurt on the ground.

As I sat on the ground watching my ankle get bigger and bigger, a few classmates gathered around me. One of those classmates was also my teammate. She tried to untie my gym shoe. I remember kind of yelling at her not to because the shoe would help control the swelling that was happening. I told her to get the teacher and to tell our coach I wouldn't be at practice. My teacher came. He and another classmate helped me up. My teammate ran to the nurses office to get a wheelchair. Instead of waiting for the wheelchair, I got up and told my teacher and classmate to help me across the field. With one of my arms wrapped around each of their shoulders, I started hopping. The pain was awful. Blood was rushing into my ankle and I wanted to scream. My teacher tried carrying me and I yelled at him to put me down because my ankle was bouncing up and down. After what seemed like forever, I got across the field and as I looked up I could see the nurse jogging towards me with the wheelchair.

Can "Like" and  FOLLOW on Facebook for Current Updates at Meg's EDS Medical Journey