Have you ever had one of your doctors whom you actually trust and like a lot REFUSE to see you? As crazy and rude as it may sound, I'm afraid that's what's happening to me right now, and I'm not happy about it. It's disheartening to feel like someone whom you once thought was on your side and truly cared about helping and healing you now can't be bothered and doesn't want to deal with you and your problems anymore. Not only is it disheartening, it's also very lonely and isolating to feel dumped by someone you thought you could count on, even if he or she doesn't have all the answers.
What is this mysteriously vague situation I'm talking about here? It's the maddening continuation of The Ankle Saga (I will now call it). For 10 years my right ankle has continuously suffered from extreme swelling and pain and has undergone two unsuccessful arthroscopic surgeries (synovectomies), much to my extreme disappointment.
I've written about this cursed ankle at length in previous articles and you'd think that by now maybe I'd give up on the stupid thing and just accept that I'll have to live with constant, debilitating pain for the rest of my life--despite that all of my X-rays and MRI scans always come back normal. I've been to countless specialists, had countless medical scans that show nothing, have wasted my time with several physical therapy sessions, and I've even traveled out of state for second opinions. But a decade later, I still can't get any answers or relief.
The last surgery I had on my ankle was in October 2011. After another round of physical therapy, post-surgery, it became increasingly clear that the surgery didn't really help. Out of exhaustion and a feeling of defeat, I gave up on it for a while. Trying to get an accurate diagnosis for a complicated condition is a full-time job! I needed to rest and try to move forward with my life. Somehow.
A year or so passed and once again I felt compelled to dive back into the tedious task of trying to figure out what was wrong with my ankle and how to fix it. I went back to my ankle surgeon, who is a very kind and soft-spoken man who always made me feel as though he really wanted to help me. This time, he couldn't offer any answers or advice and he seemed almost as frustrated as I was. He didn't want to do surgery again and he told me that he just simply didn't know what else to do other than to refer me back to my rheumatologist. By this point, I felt a bit like a battered ping-pong ball, bounced back and forth between orthopedic doctors and rheumatologists; nobody wanted to keep me on his or her side of the net.
Another year or so went by and my ankle was still in various states of swelling and pain, making me unable to stand for any length of time or walk more than perhaps a half-mile before needing to sit down. Still determined, I asked my ankle surgeon if he had any recommendations of doctors I could see for a second opinion. He helpfully obliged with the names of a couple of ankle specialists--one at the Mayo Clinic in Rochester, MN, and one at Duke Medical Center in North Carolina. I went to see both of them, and both of those appointments were a disappointing waste of time. OK, fine, I give up.
Well...not exactly. Fast-forward to Summer 2015 when I was living in New York. Shortly after I moved there, I was luckily able to get established with a rheumatologist at the Hospital for Special Surgery (HSS) in Manhattan, which is nationally ranked #3 in rheumatology and #1 in orthopedics. Great! It sounded like the perfect place for me, and I hoped that maybe someone there could finally solve the mystery of my ankle.
My new rheumatologist at HSS was great; she was kind, understanding, respectful, professional, and down-to-earth. Even though I only saw her a few times during those summer months, due to Minnesota health insurance issues, I felt like I could trust her. So when I moved back home to Minnesota in September and then discovered I'd be taking a short trip to New York in late October, I contacted her and asked if there was a good ankle specialist at HSS that I could see during my trip. She replied almost immediately to my e-mail, gave me the name of an orthopedic ankle surgeon, and urged me to try to make an appointment with him as soon as I could. THANK YOU! I had hope again.
My appointment with the HSS ankle surgeon went really well. I felt like he truly listened and understood my situation, with the help of me relaying my own experiences and my chart notes and reports from the years of care in Minneapolis. Whew. However, I explained to him that my surgeon back home was at a loss of what to do and did NOT want to perform surgery again.
In contrast, the HSS doctor's treatment recommendation was surgery, but this time to clean out the joint's damaged synovial tissue not with a scope but as open-ankle surgery. Honestly, I don't like the idea of having surgery again; it terrifies me. But if a respected ankle specialist at the #1 ranked orthopedic hospital in the country is confident that it could help and wouldn't harm me, I'm open to considering it.
I left New York happy and hopeful about how my appointment went with the HSS doctor and I was eager to speak with my Minneapolis surgeon about it. At least a year had passed since he last heard from me, but I dug through old e-mails to find his administrative assistant's contact information and sent her an e-mail. Explaining my current ankle status, and telling her about my recent appointment in New York, I asked if I could see my surgeon again to talk about my ankle and update him with what's going on with me. I thought this seemed like a reasonable request, especially since I felt I finally maybe had some new answers.
The administrative assistant, whom I've communicated with for years now, sent me a surprisingly terse, unhelpful response. In maybe two whole sentences she basically told me that my doctor didn't think surgery was an option and to consult my primary clinic and/or a pain management clinic. My heart sank and I grew more and more angry. What kind of a response is that?
I replied to her e-mail right away and practically begged to get an appointment with him, while trying to reassure her that I wasn't being a pest and that I just wanted help. I also asked if my doctor would be willing to speak with the doctor I saw in New York about my situation and recent appointment.
Another ridiculously short, snippy reply was sent to me and she said something to the effect of, "Yes, that's fine, he can give him a call." However she ignored my other questions about coming into the clinic again. She also ignored an e-mail I sent asking if the doctor could order new MRI scans so that I would have current information on file.
Since all of this has happened, I'm still troubled by my Minneapolis surgeon's seemingly change of heart or personality. Is it apathy? Frustration? Annoyance? I just can't believe that he won't at least see me for 15 minutes when this is obviously very important to me. I hope I'm wrong in suspecting that he doesn't care about helping me anymore, and that he does still see me as a real human being, and not just some impossible medical project he's sick of.
So what do I do next? Harass his assistant with phone calls? Get blacklisted by the clinic? Travel to New York and pay thousands of dollars to have surgery there, which is not covered by my Minnesota insurance? I don't know. What I do know is that I'm not ready to stop fighting. It's not only my ankle I'm fighting for, it's the rest of my life.
The Ankle Saga is not over yet.
On a scale of 1(low) to 5(high), how difficult is it for you to talk about having RA?