First, second, 20th opinions

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!

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The RheumatoidArthritis.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Comments

View Comments (15)
  • Bilal Khalid
    4 years ago

    Im having the same problem with my right knees ever since I have been diagnosed two years ago, they are in a constant state of some sort of swelling while my other joints have improved on treatment of methotrexate and orencia both subq. I have even recently been able to start lifting weights again which I am immensely grateful for but my stubborn knees make me hesitant to do my favorite leg excercise; squats with heavy weights, I am debating on just wrapping them and just doing it anyway as the pain isn’t THAT bad but the swelling is uncomfortable. I also quit prednisone a week ago after being on it for two years so I’m hoping the knees are the last to respond as the last of the prednisone leaves my system and my adrenal glands kick in.

  • jaide winn
    4 years ago

    I have the same problem, but it is my feet and ankles (feet primarily). I know it is directly related to my RA and Lupus because when I was put on Prednisone, it helped some. I have been through Enbrel, Remicade, and just started Actemra. But, it is so controlling. I can only be up about an hour at a time, and if I have to be up longer, then the next day I am on the couch all day with only getting up for bathroom needs and food. I hurt everywhere, but my feet are the worst. If I could cut them off with a chainsaw, I would.

  • Marianne Marden
    4 years ago

    Hi Angela….I have an ankle that behaves the same way off and on. I am now reading about the M.E.L.T. Method, purchased a foam roller and foot size exercise ball. Waiting for delivery of those. I am looking forward to trying the author’s techniques for fascia (connective tissue) release. It is time for me to take hold of the reins for my own care and to stop relying completely on what my specialists can do for me. We know about the effects of our illness. I wish you the best.

  • Lisa Korman
    4 years ago

    I have nerve damage. Did your Dr. Do a nerve conduction study on you?

  • Karmel
    4 years ago

    I googled the words swollen feet and ankles. A lot of sites came up. One said this issue is called edema.

    It could be a heart, kidney or liver situation. Veins may not be pumping the fluid back through the heart as much as they need to. Medications can be cause, steroids, hormones not in balance, veins, thrombosis.

    So the ortho surgeon could be correct in saying it is not technically a surgery matter according to him/MRI.

    Biopsy/pathology of the fluid will check for infection.

    Try googling edema or just swollen feet and ankles and read what I did.

  • Anita
    4 years ago

    Yup, there are some doctors who simply don’t like to answer questions. They are the ones who prefer patients who meekly accept whatever they say and don’t try to take charge of their own health care. The first orthopedic surgeon I ever met with was one of those and he left such a bad impression that it was years before I chanced speaking to another one. Luckily the new guy was the polar opposite.

    As for the ankles, you might want to consult with someone who does ankle replacements. They’ve come a long, long way since the first versions and newer models are showing some amazing success. For more information, you can look up Agility, Inbone, Salto-Talaris, and STAR ankle replacements. Also, there is an email mailing list dedicated to ankle replacements, with lots of information and people sharing their own experiences. You can find it at Yahoo groups here:

    Ankle_Joint_Replacement@yahoogroups.com

    My own ankles are a mess and I’m planning replacements on them in the near future. I’ve noticed in my own research that doctors who don’t do ankle replacements themselves tend to stick only with fusion as an option, since that’s been the standard for decades. No one can know everything, so a lot of them are unaware of the latest advances and how well the implants work.

    It used to be that replacements were only considered when you are over a certain age, but my orthopedic guy says that “rule” doesn’t apply to those of us with severe RA, since it’s a quality of life issue. I would definitely look for an orthopedic ankle surgeon who does replacements to see if that might be an option. If nothing else is working, it may be the best bet.

  • JoAnn Clarke
    4 years ago

    Angela-thank you for sharing your story. Now, after 20 yrs + dealing with this disease-I am always astounded just how little physicians know about RA! They seem to have such difficulty in believing patients regarding their pain; as if it is in “our heads”? I pray you get some relief soon. On the plus side–you discovered my favorite getaway island-Ocracoke! I hope you go back whenever you can- it is surely a wonderful place. Dealing with this disease- we all must find our own way to find a bit of pleasure when possible. Godspeed.

  • Angela Lundberg author
    4 years ago

    Hi JoAnn,
    Thank you for reading my post and for your nice comment! It’s true, RA is such a complicated disease that often doctors don’t have any answers. It’s beyond frustrating – even today when there are much better, more advanced treatments available.

    Ahh, yes Ocracoke! I loved it there so much. I’d love to go back this fall again if I can swing it. I did not want to leave! 🙂

    Thank you!
    Angela

  • Karmel
    4 years ago

    I too am Rheumatoid. My feet get swollen all day and go down overnight.

    So…..if your issue doesn’t show up on MRI I’d say not the bones/joints is cause – therefore not ortho surgeon. If you go to a ortho. surgeon what he does is cut/operate on joints/bones. Its not his job to look at other problems or remedies.

    Fluid gathering there….as I know is painful. So what is causing the fluid to gather there in particular ? I’d google that question and see what you get. There is usually someone else with same so called ‘rare’ problem.

    Has a needle sample of that fluid been taken for analysis ?

    I sometimes put an ankle/foot strap on firmly during the day to stop the fluid building up. Some Diabetics wear those stockings socks to stop fluid building in legs ankles. Put your feet up some of the day.

    Could be a nerve problem there are nerve conduction tests to see where the nerve problem starts. Could be somewhere else in body but the problem refers the fluid down to your ankles. I rub Hemp seed oil into my ankles, feet and knees and does well for me. Fortunately most times cortisone shots work on my joint swellings.

    Sometimes when the area with fluid swelling goes red or black I use Hirudoid bruise cream.

    I am not a doctor just a long time sufferer.

    Personally I’d try someone like an Osteopath if you can afford it.

  • Melinda Lowery
    4 years ago

    I have your matching left ankle and I understand! It flares
    sometimes without a twist from me. I use a cane for balance it helps me take pressure off my ankle. You would use the cane in your left hand. I hope that you find relief. If that happens again with a doctor, ask to see the patient advocate or office manger. Because I did I got s second opinion I have torn rotator cuffs and need surgery.
    you deserve to be treated with respect no matter what. Please speak out, that too helps even if you do not get an answer.
    I agree with Kellie, I hope that you find peace.

  • Angela Lundberg author
    4 years ago

    Hi Melinda,
    Thank you for your comment. I agree, I feel that I should talk to someone about how I was treated at my appointment. He wasn’t exactly outright, aggressively rude. But I felt like I wasn’t really listened to or respected. And that shouldn’t happen.

  • Kellie
    4 years ago

    I am hoping that your orthopedist is looking at the MRI results himself. The radiologist can miss something. Mine missed a muscle tear in my hip. USF health in Tampa has good orthopedists.

    Is an ankle replacement not an option? It might help everything.

    Good luck to you. I hope you will find someone to help figure it out.

  • Angela Lundberg author
    4 years ago

    Hi Kellie,

    I assuming he looked at the MRI himself? I guess I’m not sure. I’ve asked my surgeon in MN about an ankle replacement and he doesn’t want to do that because “technically” I have a healthy joint. Hmmm. Yet I have so much pain. Frustrating.

    Thank you for your comment and thoughts!

  • Kim Whitman
    4 years ago

    I am so sorry that you came all the way to Duke only to get bad news and a rude doctor. In my experience, its a common ailment among doctors. I am glad that you are enjoying our beautiful coast, however. I live near Duke and so I can see your rude doc and others like him anytime I like [well, I do have to wait for an appointment], but I choose not to see a rheumatologist there because the docs at Duke are overwhelmingly researchers and not compassionate care providers and I wanted someone to care that I have RA. I am pretty bummed by it. I hope that your ankle gets better as mysteriously as it became unwell. Enjoy your beach holiday and think positive thoughts!

  • Angela Lundberg author
    4 years ago

    Hi Kim,

    Thanks for your comment and reading my post. Ha, well, I guess I’d recommend not seeing my rude doctor. haha…

    Intelligent, open-minded, knowledgeable doctors WITH compassionate bedside manners – is that too much to ask for?

    Thank you for your encouragement. And I DID enjoy my beach holiday a lot! I didn’t want to leave the Outer Banks.

  • Poll