Mayo Clinic update

The Mayo Clinic, Rochester, MN

I went down to Rochester very early Thursday morning for an appointment with an ankle surgeon at the Mayo Clinic. My ankle surgeon recommended I see this guy and I had been waiting many months just to get an appointment. Well, I have the sinking feeling that all of this is just going to be a huge waste. The doctor didn’t seem very positive that there’s anything he can do to help me. He (like so many other doctors I’ve seen) said that since my X-rays and MRI scans don’t show anything, he doesn’t think surgery would help. Or it could make my ankle worse. He does not want to fuse it (I don’t really want that either, but…). He doesn’t think scoping it again will help either. The only idea he had was to refer me back to my rheumatologist to manage my RA. Okay, great. But my rheumatologist doesn’t know what to do either. Since the rest of my joints have been pretty good and stable, my rheumatologist doesn’t really want to switch my medications. WHAT AM I SUPPOSED TO DO? My ankle is constantly noticeably swollen. It’s painful every day. I can’t walk or stand on it for very long before the pain becomes close to unbearable. I’ve been dealing with these stubborn ankles since 2005 when they both flared up out of the blue. The left one got a lot better (it’s still not normal) but the right one has remained in pretty bad shape. I’m at the end of my rope. Do I just have to live with this? I can’t believe that nobody can figure out exactly what’s going on or how to fix it. But anyway, I need to go back to the Mayo next Friday to have new MRI scans for each ankle. And then a follow-up appointment with the doctor after he reads the scans. The only appointment I could get for the MRIs is at 7 AM, which is really annoying. So either I’ll have to drive the almost two hours down to Rochester, leaving my house at 5 AM. Or I’ll have to go down there the night before and spend the night. None of this is very cost-effective, of course. But, I will go back and have the MRIs. I’m not feeling very optimistic right now, but I hope something good will come of this after I have the new MRI scans. If anybody has any advice or insights, please let me know.

6 thoughts on “Mayo Clinic update

  1. I have significant back damage that is NOT “fixable.” In 1999, I was told I should think about going on permanent disability. Instead, I went into pain management.

    It might be worth it for you to check out a pain management doc. It’s why I am able to continue to work full-time. The back hell came first, then RA. But with good pain management (that has recently been adjusted because of the RA), this is all deal-able.

    Good luck!

  2. Have you tried standing on your head? It would take the weight off your ankles. Plus, it gets people’s attention. ;)

    To be really honest, I have incredibly supportive doctors and we spend a lot of time talking about symptoms and treatment options. But the result at the end of the day is pretty similar: they don’t understand what’s going on and they’re frustrated that my graduate school is not being supportive (at all) and that I’m not responding well to medication. At this point, they can only refer me to other people that might have a different perspective, try new medication options (either new meds or different combinations of old meds), or tell me to let some time pass (we’re talking months here) and then reassess.

    So I just wanted to say, Don’t be too discouraged that people don’t believe in you. It kills your self-esteem for sure (because I’ve been there) but you can have supportive people and still feel downright awful. Or spend a LOT of time in bed. I feel like the endless circles is the curse of having a chronic disease, especially one that doesn’t make sense.

    I’m praying for you and wishing you the best for your MRI. I hope that it will be a positive experience (somehow.) And until then, just take things one day at a time (or maybe even one hour.)

    with love,

  3. I’ve been through 3 ankle surgeries so I can understand your frustration. Hopefully the new MRI will give a clear picture of what’s going on. Remember, you’re the patient and you know how things feel. Keep pushing for answers.

  4. I would be cautious about pain clinics. Sometimes things are injected that atrophy or shrink muscles. You need muscles to support the bones. What have you researched as far as alternative therapy?
    I was just diagnosed with RA May 2012 and just started Tx in October. I’m almost afraid to even disclose my Tx because it’s not the Traditional treatment of masking symptoms.
    If you are interested in another approach, you might like to check out the Road back Foundation. Good luck!

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