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Since I have a lot of ‘back story’ my first series of posts will be what my symptoms were, how I went about getting diagnosed, what I tried, what worked, what didn’t, how I found doctors, what I haven’t tried yet and everything in between. Have questions on things I didn’t post or want more information? Start a topic on the forum and we can discuss!
So let’s get started!
When did all of your symptoms, problems, injuries begin?
I started having knee problems when I was in elementary school. I was very active back then! I played softball and loved to dance – needless to say I was definitely using my knees hardcore. One morning I woke up and my knee was very swollen, hot to touch and stuck in a bent position. I went to my pediatrician and was referred to an orthopedic doctor. After seeing two different doctors it was chalked up to ‘bursitis‘ and I was given naproxen (an anti-inflammatory) and told to ice, heat and rest my leg.
That didn’t really help my knee get any better…
I started getting more severe knee pain and my knee would get ‘stuck’ while I was walking. It turns out that my meniscus in my left knee had been ripped, flipped and separated from the bone. The doctors said that they thought I was possibly born with a deformed meniscus and through enjoying life I injured it more. The solution – knee surgery.
Facing surgery in 5th grade isn’t the easiest thing for an elementary school aged child to grasp. Let alone having to be in an immobilizer for 6 weeks! 5th grade was a long time ago and luckily I have vague memories of that recovery. There are a few memories that stand out above the rest.
Because I had to wear the immobilizer for such a long period I developed a blister on the back of my leg. It was pretty gross. It ended up getting infected and caused a headache. My mom remembers having to change the bandage and put cream on it several times a day. I still have a scar on the back of my thigh from it.
After the 6 weeks of immobilizer wonderful-ness I had to start attending physical therapy. Oh I remember the first therapist I had. She was a woman so I thought that she would have some sympathy on me. The very vivid memories of her trying to FORCE my knee to bend are some of those memories that just make you squirm thinking about. Ugh, that right there I think was the worst part of the whole experience. Because of her forcefulness and lack of sympathy I only did one stint of PT with her. Looking back she definitely wouldn’t win the america’s next top therapist award from me.
Once I started back to school I had to be in a wheelchair. I guess my Mom didn’t trust me crutching myself around (Mom? Is that true? haha) or maybe it was too much for me to do. Either way, I remember my class fighting over who would get to push me down the hall. One of my old neighbors even helped organize a party for me when I returned! They bought me a pair of hologram smiley face earrings and few other small gifts. I’m pretty sure I still have those earrings 🙂
My family and I prayed that this was a one-time occurrence and that my knees would hold up great the rest of my life! I wish I could say that was the case, our prayers were answered, and that’s the end of the story.
Buuuuuttttttt it wasn’t. Plus, how interesting of a blog would it be if I said- THE END. haha!
It seemed that the meniscus surgery was just the tip of the iceberg. As time went on and I continued to grow my knee problems seemed to increase. One by one doctors just attributed it growing pains or would say I just needed a cortisone shot and my knee drained. The doctors used to make remarks like ‘oh you’ll have a new knee by the time you’re 30!’ or ‘you have the knees of an 80 year old woman!’ Because my knee problems weren’t going away I had to start to give up things I loved. I stopped playing softball and my dancing days were over. By giving these hobbies up I did get to become more involved in musical theater and began to fall even more in love with singing! I had been singing ever since I could talk and that was definitely a hobby I could do that didn’t impact my knees.
I would get diagnosed with a kneecap-tracking problem, so I’d wear a brace for a few months. Another appointment I’d be given a prescription for 6 weeks of PT. Orthopedic after orthopedic, physical therapist after physical therapist, my knee pains continued to occur and no one could get to the bottom of it. At one appointment the doctor basically said I really am not sure what else to do. Maybe you should see a rheumatologist and explore alternative treatments?
So off we went to the rheumy. Blood tests came back negative, but the doctor suggested that I may have psoriatic arthritis. There was no definitive answer so our exploration at the rheumatologists really ended at a dead end.
Our only other option was to explore alternative treatments. I’m pretty sure that Dr. Hopkins was God sent to us. My Mom came across his chiropractic services and decided to take me. I always joke that Dr. Hopkins saved my life. He didn’t really save my ‘life’ per say, but he definitely has helped me with a ton of aches and pains. My family and I think he has magic in his fingertips 🙂 I began seeing him when I was 13 and I continue to see him today. I cannot even begin to explain how when everything is in alignment how good you feel. And how when you’re out of whack, you definitely know it!
*If you live in the Pittsburgh area you should definitely check him out. His office is in Bridgeville – right off the exit of 79.
Once we found Dr. Hopkins he pointed out the fact that my hips were not in alignment and that my one leg actually was longer than the other when this happened. When you put the hip back into place both legs are even and walking is much less stressful. His adjustments helped many, many times and when I came in with more complex pain symptoms he’d pull out the heat, stim machine, and show me exercises to do.
Throughout my younger years (haha that makes it sound like I’m so old) he helped me overcome many obstacles, but I did end up needing 2 more surgeries.
In 9th grade my right (the other knee) grew a bakers cyst that, by the time they got it out, ended up being the size of a peach! Originally it was supposed to be an outpatient procedure, but upon going into my knee my surgeon realized that the problem was much bigger than he had anticipated. The plan was to go in arthroscopically and drain the cyst, but he ended up having to completely cut open the back of my knee. I now have a lovely L shaped scar and I always joke that because of this scar I can’t be a leg model now. (honestly, that’s really the only reason 😉 ) My doctor put a drain in my knee during the surgery and had me keep it there for a day. I ended up having to spend the night in the hospital due to the drain. I don’t remember much from that hospital stay, but every now and then I have flashback memories of me laying in the hospital room or the nurse coming in to check on me. That was the first time I had stayed in the hospital so everything was foreign to me.
In 11th grade my left knee grew an extreme amount of tissue called ‘plica’. Plica are sleeves of tissue within your knee and if they become irritated the synovial tissue around the plica can swell causing scarring and thickening of the plica tissue. My plica tissue was extremely thickened. My doctor still talks to this day about how he couldn’t believe the ribbons of tissue that were in my knee. Most often this plica syndrome occurs in the medial part of the knee. Mine was not only in the medial part of the knee, but was all along the top of my knee and ribbon-ed it’s way into my muscle. From what he tells me it was a pain to get it all out. In high school I became active in the dance/pom pom team at our school called the Bethettes. The Bethettes marched at football games and got to go on the band trip as well! Because of this surgery I had to sit out a lot of my 11th grade season. I ended up having to quit my senior year because I still wasn’t fully recovered and participating would have just aggravated it more.
In 11th grade I also took a trip back to the rheumatologist. This time going to a different doctor who also suggested that I had psoriatic arthritis. His diagnoses was much more concrete and he was pretty positive that I was suffering from the auto-immune disease. He also identified a small patch of skin on my leg that was psoriasis. This was the only time (that I can remember) that I had psoriasis. I had all the tell tale signs – inflammation in asymmetrical joints, hot to touch, rheumatoid and lupus markers were negative, inflammation markers were WAYYY high. He told my mom that if I were his daughter he would treat the flare ups as they came with cortisone shots in the knee. Given my age he recommended that I not start on heavy drugs like methotrexate.
Oddly enough, after being given this diagnosis it was the last time I had knee pain until I was in my late 20’s. It was the last time I received a cortisone shot and it was the last time I sought after orthopedic advice.
Throughout my elementary, middle and high school years I consistently relied on Dr. Hopkins andhis chiropractic services! When I was younger this was really the only alternative treatment that my family and I explored. I highly suggest seeing one if you’re having knee, back, hip or neck pain. The Orthopedic doctor who did my 1st and 2nd surgery, Dr. Demeo, does not take patients anymore. He referred me to Dr. Schilken who did my 3rd surgery. Dr. Schilken is located in the South Hills of Pittsburgh and is an excellent orthopedic surgeon.
So that’s my story of when my symptoms first started showing themselves! What’s your story? If you feel comfortable sharing your story comment below.
Putting your story out there of when you first started seeing symptoms can help future patients have the knowledge they need to seek out medical help!!!
To continue with my story, click here.
Wishing you a pain free day!!
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