I always knew something was different.
I don’t think it was until I was older that I knew something was wrong.
Honestly, the right person/team assessing you and looking at your imaging is sometimes all it takes, right? However, finding that right person or team can feel almost IMPOSSIBLE! I always had a feeling that something wasn’t right about my hips but didn’t know that something was wrong, and how severe it was, until I was 29 years old. And this is with something that I have had since birth.
In My Case
The rarity of my situation didn’t help. The severity of my dysplasia is very rare, and just simply having dysplasia in both hips is very rare so having this severity in both hips is extremely rare! Yippee, I’m special!
I had been to my family doctor and other physicians about my hips for years but nothing ever came of it and I just stopped reporting it. I had x-rays done and was told there was a chip or healed fracture in my left hip but nothing further was ever done. I even attended physiotherapy in my early 20’s to try to get help but they never looked at imaging or were able to tell me what was wrong, just that I appeared to have flexible ligaments…. *sigh* thanks but that really doesn’t help with my pain. They would attach me up to the machine and leave me for a while to let it do it’s work. But it never really helped.
Being active my entire life was a blessing. While the wear and tear may have (who are we kidding it definitely did) make things worse, it also kept me fit and strong which allowed me keep the joints supported and the weight pressure minimal on the joints.
Imaging won’t tell you everything
Even after the best eyes were looking at me and my imaging they still didn’t see the true extent of things.
After the surgery on my right hip the surgeon told us that the joint was in worse shape then they thought. He said a few things:
- They had to make the incision larger then anticipated because the strength of my legs were making it hard to get to the joint. This was good and bad as it was keeping my joint together and allowing me to still walk but it did not show them how bad it really was.
- The arthritis was also a lot worse then the x-rays showed; and
- The bone graph was much more structural then they anticipated, which it was originally being done to ensure there would be enough bone to work with in future surgeries.
No matter how many x-rays or MRIs you get it may not show the true extent. Just keep believing in your gut and work to make yourself better.
Frustration between appearance and the pain inside
I felt like I was fighting an uphill battle whenever I spoke to anyone about my pain. Unless they knew me, they didn’t believe the extend of my pain because I appeared to walk pretty well and I was active.
During my first meeting or two at my Surgeon’s office they would do physical assessments of me. The doctor that did them (not my surgeon) made me feel like ‘You can walk so I don’t know why you’re here’ and ‘You look fit and can move your legs so I’m not sure why you’re here’ (He didn’t actually say those things that was just the feeling that I was getting). It made me feel like shit.
LUCKILY, my surgeon saw what I was feeling. Which besides my amazing team of Athlete Therapists and Chiropractors I had never really felt before.
The conflict between my appearance and what I feel on the inside is something that I have had a lot of trouble with over the years. I just kept wishing that they would create a machine that could replicate my pain in someone else so they could feel what I was feeling and understand why I was seeking help. Not that I would ever wish this pain onto anyone, only for diagnostic purposes!