I’m scared. I’m scared of the unknown. I’m scared of change, and I’m scared of things staying the same.
Today, just a few hours after this post is published, I’ll be sitting in a doctor’s office. A new doctor – one of many who I’ve seen for my back / hip / leg pain.
My problem started in December 2005. I was a freshman in college, and a member of the Butler University women’s golf team. December is the off-season for us, but we worked out together as a team several times a week. It happened during an evening workout session. I remember the football team was working out too. We were doing walking lunges down the hallway of Hinkle Fieldhouse. Lunges where we held a weight with both hands and twisted in the opposite direction of the leg that was going forward. I remember everything about that moment. The smells, the sounds, and of course….the feeling. The feeling of something being wrong. It wasn’t some acute moment where I fell to the ground, screaming in pain, not able to move. Part of my left leg just felt….numb. Tingly. Not right. I could still walk, and at first I really wasn’t in pain at all.
I don’t remember how long it was until I first started feeling the pain. A day or two maybe. At first it was mainly just below my knee. Sometimes it went all the way down to my ankle. Keeping me knee bent made it worse. I had trouble sitting unless I could constantly shift my leg and stretch it out. Plane rides were agony unless I could get an aisle seat and stretch that leg out. I can’t tell you how many times I’ve had people on airplanes trip over my leg stuck out in the aisle….or how many times it’s been run over by the drink cart. Walking down hills when I was playing golf was the worst. Every step down the hill would result in a sharp acute pain that felt like someone was digging a knife into the side of my knee.
I stopped playing golf my junior year. I stopped cold turkey. It was my life and my identity, and then….it wasn’t. I didn’t quit just because of my leg pain. There was a coach change, and our new coach wasn’t understanding of the fact that my academics had to come first. I was on an academic scholarship, not an athletic scholarship, so my grades absolutely had to be my first priority. I was having a difficult time balancing everything, and something had to give. That “something” was golf.
By that time, my pain had changed. It was no longer just bellow my knee and down to my ankle. It was also in my lower back, by hip, and down the outer side of my left leg. By that time I had already seen several physicians and been given a variety of diagnoses. The theories involving my knee being the primary source of the pain no longer made any sense. The source of the pain was obviously higher up. The first physician who identified my back as the issue was in Chicago. The pattern of my pain was classic sciatica. By that time I had received X-rays and multiple MRIs on my knee, all showing that it was perfectly healthy. The physician in Chicago was the first to send me for an MRI of my back. He was certain that it would show a bulging, or herniated, disc in my back. It’s a weird feeling to hope for something to be wrong with a scan or a test, but when you don’t have answers, finding an answer is all you really want. Turns out, my discs are just fine. A couple years later I had a repeat MRI and a test to check my nerve function – again, everything was okay.
I lost hope for a while. I lost hope that I would ever know what was wrong, and without knowing what was wrong I wouldn’t be able to find a solution and ever feel better. After we got married, my husband became frustrated with my limitations. Our dog has back problems and needs to be carried up and down the stairs of our third floor apartment, which is something I am unable to do. I struggle to carry groceries up the stairs, so he has to do a lot of the grocery shopping. He convinced me to go see a DO who specialized in osteopathic manipulative medicine. He got a recommendation from a friend who is a DO, and it turns out the guy he recommended is literally the guy who wrote the textbook on the subject. He quickly diagnosed me with sacroilliac (SI) joint dysfunction. I was skeptical at first – after all, I had received many diagnoses before which has all turned out to be incorrect. But when I went home and started researching the condition….it was the first thing that had ever made complete sense. My symptoms all fit the condition perfectly. For the first time, I had a bit of hope. I started seeing the DO every week or two, but it became apparent that I wasn’t going to be an easy case. I was grateful to be pain free after my sessions, but it only lasted a few days at most. We couldn’t get the adjustments to stay.
In June last year I drove out to Buffalo, NY at the urging of my family to have a consultation with a neurosurgeon. After more MRIs confirming that my back is still perfectly normal, I was again given the diagnosis of SI joint dysfunction, and presented with my options. The first step was to find someone in Indianapolis who performed SI joint injections to confirm the diagnosis. The “gold standard” for diagnosis is to inject lidocaine into the joint so that it is numbed, and see if the pain is mostly or completely relieved. If it is, then it indicates that the joint is the source of the problem. I waited until my annual physical to get the referral from my family physician – someone who I trust immensely. The injection confirmed the diagnosis – I felt great for a couple of hours. Then the lidocaine wore off. I was also injected with a corticosteroid to help reduce the inflammation in the joint. For some people, a few injections of the corticosteroid is apparently enough to fix their problems. The injections are done a month apart. After three of the injections, it was clear that I wasn’t getting any long-term benefit from them. Because the injections need to be guided by fluoroscopy, which involves radiation, it’s not advised to have the procedure done on a continuous basis. That meant I was on to the next step – a referral to physical therapy and a physiatrist.
For the last month I’ve been in physical therapy. There’s no doubt that I’ve gained strength and flexibility. Some days, my pain is different. The pan down my leg isn’t as bad, but the pain in my lower back / hip is worse. Apparently, that’s a good thing. I’ve always struggled with delayed pain. I can walk a while and feel okay. If I really walk a lot, then I will start to feel it immediately, but for the most part I don’t feel the majority of the pain until several hours later. It’s easy to push myself too hard, because things don’t hurt while I’m doing them. That’s been the biggest problem with physical therapy. My therapist was impressed by my progress after our first session that she ramped things up quite a bit, which felt fine at the time, but I was almost unable to walk for the next couple of days. We’ve had to be cognizant of my limitations since then.
Today is my appointment with the physiatrist. I don’t know if I’ve ever been so scared of an appointment with a physician – at least, not since I was a kid and terrified of needles. I know I shouldn’t be scared. She comes highly recommended, and by all accounts is incredibly thorough. I’ll be in good hands. I’m scared of the outcome of this appointment. The purpose of this appointment is to evaluate me for surgery. Right now I see a few potential outcomes, none of which sounds particularly appealing:
a) I’m referred to the surgeon right away
b) I’m sent for more physical therapy with a re-evaluation in the future
c) I’m not a candidate for surgery, and I need to rely on physical therapy
You would think that option c is the best, but I fear that I’m going to need physical therapy for the rest of my life, and while I don’t mind doing physical therapy in the short term, I don’t want to be there twice a week for my entire life (plus all the exercises that I have to do at home twice a day can become time consuming…). Option b just means more waiting….and I’m ready to get on with my life. So why isn’t option a what I’m looking for? It’s surgery. I know it’s a relatively safe and minimally invasive surgery, but I’ve worked in health care and I know every possible thing that could go wrong. In this case, my knowledge is a detriment, not an advantage.
Part of me feels like I should be excited because I actually have a chance at complete recovery, of being able to live a normal life again. Don’t get me wrong, I’m grateful for that because I know a lot of people in chronic pain don’t have the option of a permanent solution. This appointment is probably going to be a good step for me, but I still fear the unknown, fear the process that will result in change, and fear that things will stay the same.
Until later, Ashlen