First, Second, 20th Opinions
Okay, I admit, I haven't had 20 opinions on my stubborn right ankle, but I'm guessing that I'm getting close to it. I'm in North Carolina right now because I saw an orthpedic foot and ankle specialist at Duke University Medical Center last Wednesday, as a recommendation from my ankle surgeon. After dealing with this constantly painful and swollen ankle for nine years, with several cortisone injections and two surgeries, I feel like I've exhausted all of my resources and options in Minnesota. I've seen numerous doctors, podiatrists, specialists, physical therapists, surgeons, etc., and my ankle is still a mystery that nobody has been able to solve or treat successfully. I've even taken two separate trips down to the Mayo Clinic in Rochester, Minnesota, and was told both times by the doctors, "I'm sorry, I don't know what to do." How can nobody figure this out after nine years?
Frankly, I can't really afford this trip to North Carolina, but I felt like it was maybe my last hope. Luckily my insurance will cover the appointment. And, it's a good thing it will, because my appointment was kind of a waste of time. The doctor did a very brief physical examination, looked at my MRI and X-ray scans, and then said, "Well, I'm sorry but I'm going to tell you what everyone else has already told you. There's nothing I can do." What? Tears welled up in my eyes and I fought to not break down sobbing. The doctor brusquely said that a joint fusion wouldn't work, nor would another arthroscopic surgery. He was confident that it's the soft tissue that's inflamed from the RA, not the joint itself. I tried to ask more questions and he became short with me and told me I was "grasping at straws" and then made a rather rude comment about me asking the same question more than once. He thanked me for coming and swiftly left the room. So I flew all the way to North Carolina for this? He could've told me this over the phone after chatting with me for 10 minutes.
I left the clinic, dejected and depressed and wondering what to do next other than getting my foot amputated. He suggested I try acupuncture (I explained I already have) and/or biofeedback. I'm willing to try that, but I know there is significant swelling and inflammation and pain in my ankle. ALL THE TIME. Something is considerably wrong with it and I want it fixed. Or made noticeably better at least. I can't believe that this is impossible. Or is it?
I've written about my ankle problem a bit already in previous posts, but I haven't yet told the whole story. In April 2005 I went on a trip to Europe with my parents to visit my sister who was studying in Spain. Not long after we arrived, both of my ankles suddenly flared up with intense pain and swelling. I had never had anything happen like this before--at this point I had had RA for eight years and never had any problems with my ankles. The pain was excruciating and I was so upset that my trip had been ruined because I could barely walk. I called my rheumatologist back home and got a prednisone prescription faxed over. The prednisone didn't help much. I spent the rest of my trip (the last leg of it I went to Berlin on my own to visit friends) icing and wrapping my ankles and worrying that some serious RA damage had happened.
When I returned home, I saw my rheumatologist right away and had MRI scans done of both ankles. Strangely, nothing abnormal showed up on the scans. Whew! No damage. But what was wrong? I was put on a higher dose of prednisone and advised to see an orthopedic specialist because according to my rheumatologist, it wasn't the RA (I changed doctors not too long after this nightmare started, by the way). The first orthopedic doctor I saw thought it was a mechanical problem and sent me to physical therapy. I completed therapy and that did nothing to help my ankles. The constant icing and rest and wrapping/taping helped the left ankle considerably, along with the steroids (my theory), but the right ankle was still angrily inflamed and swollen.
After seeing the first orthopedic doctor, this began a game of "musical specialists" that has lasted for the past nine years. I got sent to podiatrists, more physical therapy, orthopedic specialists at the University of Minnesota (one of the best, if not the best, places to go in the Twin Cities/Minnesota). Finally nearly two years later, I saw yet another orthopedic ankle doctor who reluctantly scoped my ankle to see what was going on in there, because yet again my MRI scans showed nothing. After the surgery, he told me that he was surprised at what he found when he scoped my right ankle--a lot of damaged synovial tissue, which he removed. Great! Scrape that stuff out and my ankle is cured, right? Wrong. While the surgery helped some, it didn't "cure" my ankle by any means.
Five years later I had a second arthroscopic surgery performed by the same surgeon. Same exact surgery, same situation. My MRIs and X-rays showed nothing but when he scoped my ankle he removed a lot of damaged, inflamed tissue. RA "gunk." I did another round of physical therapy after this surgery, but I was disappointed that it didn't really help that much. Nothing did.
Now it's 2014 and my ankle is still a huge pain, literally. In April both ankles flared up out of the blue and I could barely walk. I saw my rheumatologist (this one I like a lot, at the University, whom I've been with since 2007) and he was also frustrated and puzzled because the rest of my body has been responding quite well to my current treatment and medications. He's hesitant to change my treatment plan when the rest of my joints are doing well, and I agree with him. But what about this ankle? I can't stand or walk like a "normal" person. The pain significantly limits my mobility and just my life in general. So once again, unsure of what to do, my rheumatologist referred me back to my ankle surgeon.
After having a new set of MRI and X-ray scans in May, I saw my surgeon. I admire his honesty when he tells me that he doesn't know what to do or how to help me, yet it's hard to hear those words when you just want some answers and some relief. He decided to give me another cortisone injection (they never worked in the past) and told me to wait a month for that to kick in. I waited. It did nothing. The next appointment I had with him, I asked if there was anybody else I could see, even outside of the state, who might be able to help me. He told me about the doctor at Duke and said that he wouldn't feel comfortable doing a third surgery on my ankle until I saw the Duke specialist.
And that's how I have come to be in North Carolina, still with no clear diagnosis, nor any treatment plan that will take my pain away. Onto the next thing, right? I suppose so. But right now, I'm taking a little vacation from all of this. Since I flew all the way out here, I decided to stay a bit longer and see some sights. Other than my two nights spent at an isolated, dull hotel near the orthopedic clinic, I've had a great time on my trip. I got to meet one of Health Union's awesome employees who lives in NC and we went out for dinner in Chapel Hill. Then I drove to downtown Raleigh the next day and had a crazy fun time with a new friend. Raleigh was fun, but I had already decided that I needed to get to the beach somehow and see the ocean. Just by luck, at the last minute, I decided on staying at a little bed and breakfast on Ocracoke Island, which is part of North Carolina's Outer Banks. And that's where I am right now! I couldn't be happier or more impressed. The island is lovely and charming and uncrowded. The beaches are beautiful and unspoiled. There's a lot of interesting history here, including an old lighthouse, a museum, cemeteries, and fascinating local lore. And my B&B is a quaint house built in the 1920s and still run and operated by family members who have lived on the island for generations. I don't want to leave!
So that's my ankle story, in somewhat of a nutshell. There are more complicated and probably boring details of dealing with this for the last nine years, of course. If anybody has gone through something similar or has any good, new advice for me, I'd love to hear about it. But for the rest of my stay here, I don't really want to think about it too much. So...I'm off to the beach!
On a scale of 1(low) to 5(high), how difficult is it for you to talk about having RA?