Something I have encountered with several of the conditions I have, is a complete lack of awareness, not only among the general population, but also among some healthcare providers. I suspect part of why it took so long to diagnose some of the issues I have is this lack of awareness. I do realize the sheer number of conditions, plus my ability to appear normal further complicate diagnosing and treating things.
Hip impingement and hip labral tears are something I never heard of until within a few months of diagnosis, in spite of having hip issues for several years. It was first suspected by a physical therapist. Primary care physician sent me off for MRI arthrogram and referred me to an orthopedic surgeon.
The MRI arthrogram is a story in itself. I had no idea what to expect. I'd had SI joint injections before, had MRIs before, but not contrast injected directly into the hip joint, then MRI. I asked the radiologist giving the injection what to expect and he said he was not sure as they did not see patients again afterward. Oh, OK then. The injection was no big deal. No pain at all. But, I was told to hold my leg with foot in internal rotation. This is a very strongly disliked (painful) position for hips with impingement, labral tears, so holding my leg in an uncomfortable position was not pleasant. I no longer recall if they let me walk to MRI, or took me in a wheelchair. The MRI was fine, anesthetic from injection actually helped. I was able to walk afterward, but my hip felt funny, so I took the elevator back to main level, but by the time I got home, stairs were no big deal, so got my swimming stuff, went back to work, then to the pool, swam laps--no pain in hip! Back to work, then went for a walk--again, no pain! Wow! Getting pretty excited by this point. Well, as the evening progressed, the anesthetic wore off, and my hip got really achy. I knew very little of the process at this stage, but even without knowing that the effect the anesthetic has is used as a diagnostic tool, I guessed that the hip feeling better, then worse, meant it was the hip itself that was the problem. I did not sleep much that night from hip pain, and the next day was miserable--reminiscent of the absolute worst ever pain I'd in the hip. I was working toward a major deadline at work that week, so time off was not an option. Primary care physician prescribed narcotic painkiller, telling me the first few days can be uncomfortable. Well, the following morning when I woke, I somehow stumbled to the living room, but then the hip simply would not bear weight--no position at all. I had set my phone down....and managed to get a distance from it, but then could not get back. No furniture or walls between me and it to use for support, could not crawl, just leaned against the couch for a bit trying to figure out what to do. I knew I could not get anywhere, so ER, urgent care, or anything, was out of the question. So, max dose narcotic, ice packs, heat, ice, heat (yes, alternating repeatedly), gently trying to put the hip through unweighted gentle range of motion, trying to find a position it would bear weight. It took me a couple of hours, but finally got to the point it could bear weight well enough to get down the stairs, get to work. I realized that the severe difficulties were a result of not moving all night, as I finally slept with aid of narcotic pain killer. Thus, knew I needed to get the hip moving, keep it moving, to avoid repeat. I stayed on max dose of narcotic entire day, made sure to get up and walk every 20 minutes or so, etc. We got the project finished, and I survived the day! I no longer recall the weekend. I do remember being afraid to go to bed that evening out of fear I'd not be able to walk again the next morning, but that day seemed to have been the peak. Things very slowly improved from there, but never returned to pre-injection baseline.
First appointment with the surgeon, I had no idea what to expect, what was going on, I was terrified of more surgery as past surgeries had not gone well and I knew this was a big surgery. He explained that the numerous issues with me made it more challenging to sort out what the major pain generator was. To help clarify, he gave me a cortisone injection in the hip, telling me to live normal life. If the injection gave dramatic relief, then the hip was the major issue and surgery likely would help. If the injection did not help much, then other issues were the problem and hip surgery unlikely to be helpful. I still recall leaving the orthopedic clinic half hoping the injection would work as I was desperate for help with the hip pain, but half hoping it would not work as I was afraid of surgery.
The injection worked. Incredibly well. But wore off in a month. I was not ready to schedule surgery, but clearly the hip was a problem. I asked if possible to schedule an appointment to discuss things before deciding--yes. At that appointment, I left confused, but relieved. Yes, clearly the injection indicated the hip was a problem, but the sheer number of other issues, still made my case uncertain, so he ended up recommending against surgery, and managing with injections instead. I asked regarding frequency as the first injection was already losing effect. I was informed no more often than every four months. This was the plan. I lived for a year with decently controlled hip pain, reasonable functional ability 25% of every 4-month period--the duration an injection was in effect. That meant 75% of the time I was really struggling, very limited. This clearly was not working.
I finally asked regarding long term management, as I could not manage daily tasks with the severity of hip pain. I was referred to a provider for Active Release Technique (ART), and also recommended to send my records to an orthopedic surgeon in another state for review to get another perspective. However, I was specifically instructed not to send images only, but also medication list, diagnoses list, etc. I was told that if it were only my hip he'd operate, it was everything else that made him concerned that surgery would only cause worsening of other issues. I respected his caution and honesty. I realized that to a certain extent surgery can always be done later. However, once surgery has taken place, it cannot be undone. I was still afraid of this surgery, so desperately needed a surgeon who was confident it would help if I were to get it done. I dutifully contacted both of the recommended doctors.
I gave ART a trial. He suggested biomedical dry needling based on my amazing response to injections. The dry needling proved effective. So, he used a combination of ART, needling, some Graston, etc. for several months. However, after the first few weeks, he asked when my next surgeon appointment was, as in his mind I needed surgery and he was not going to be able to help resolve things with conservative approaches. I mentioned that nothing was scheduled, but I'd been told to send pertinent records to another surgeon.
I collected and compiled enough medical records to tell the story of my hip, included all of the information I had been instructed to include. My primary care physician asked to review, then send from the clinic what I had collected. Then I waited. Nervously waited. Desperately hoping this surgeon in a different state would have pity on my case, think he could help. I was desperately hoping he wanted to see me, but also still desperately hoping maybe there would be some idea other than surgery. Yet, in the back of my mind knowing surgery was the direction things were headed. I refused to let myself think about it though.
I finally heard back....the out-of-state surgeon thought he could help me! But, he wanted to see me to check things himself, wanted to get more imaging, a diagnostic injection. I was so relieved, so nervous.
The night before the appointment I learned a couple of things. One, if one has taken Ambien every single night to knock oneself out in spite of pain, and one decides to skip a night because of needing to leave very early the next morning for travel, that said person will not sleep at all the entire night due to withdrawal of sorts. Second, with being awake all night, I also learned that
both hips hurt at night, not just the severely painful left hip. Oh. I was not mentally ready to consider I had issues with both hips. I knew right had some issues, but it had seemed to calm OK.
This surgeon was thoughtful, thorough, honest, inspired confidence and trust from the start--which I desperately needed by this stage as scared but desperate, had already had one surgeon recommend against surgery. He checked my hip--range of motion, strength, etc., ordered 3D CT scans of my hips, and a diagnostic injection, then rechecked hip range of motion once the anesthetic from the injection was in effect. He also found more even than first surgeon had found. I was diagnosed with femoral acetabular impingement (FAI), subspine or anterior inferior iliac spine (AIIS) impingement. I already knew I had a labral tear, torn ligament (ligamentum teres), ischiofemoral impingement (IFI). Importantly, I was told I did not have dysplasia or version issues. If these had been present, arthroscopy would not have been an appropriate procedure.
The second surgeon agreed I was complicated, but not too complicated, and he felt surgery worth it. He basically told me I'd exhausted non surgical options. Thus, my choice was to continue as I was or surgery. I was clearly not doing well with current approaches. He was honest about expectations--told me I'd probably rehab slowly, that he could not guarantee getting me pain-free or regaining full functional ability. But, he was confident he could give me less pain, better function, and that was all I needed. Long story short, I left with surgery scheduled....and hope. Hope for the first time in years.
Side thoughts. When one has lived with chronic pain for well over a decade, all spine MRIs "normal," one learns to accept pain as part of life and move on the best possible. I automatically took this same approach with the hip. Once pain had persisted months, I treated it as chronic and moved on. The result was that I quite likely made things worse from not knowing what the problem was, not protecting against further damage. Also, it was oddly relieving to have a positive MRI after so many negative tests. Finally, an explanation for the pain. I was not crazy. There was a real mess inside my hip causing pain.
Surgery. Oh my. Hip arthroscopy to treat impingement, labral tears is a big surgery. I had never had orthopedic surgery before. I had a rocky recovery a few years prior from a simple procedure. All surgeries had rough recoveries for some reason or other. I typically come from a "knowledge is power" mindset, thus read all I could find on the surgery, watched videos--including surgical videos. (No, I am not squeamish.) I asked lots of questions--of PT, others who had the surgery, etc.
I will leave surgery/recovery for another post. Diagnosis of the hip issues literally took years. Even once mostly diagnosed, it still took months and a second surgeon to figure out a sustainable plan. There was a lot of frustration during those years, but also lessons on endurance, patience, etc. I will mention that my only regret regarding hip surgery was not being able to get it done years earlier. It was not worth being afraid of, or worrying about recovery. I am beyond grateful I had the surgery.
Image from the arthrogram! I always watch during injections if I can see the screen. I am curious about things, fascinated to see inside the human body.
For reference. Key resources, information I found helpful early on in the diagnostic process. I had numerous sources, but these are a few that I found most helpful.
Description of hip labral tears (Houston Methodist)
Description of FAI (Houston Methodist)
Explanation of diagnostic process, patient selection (Chris Larson, MD)
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