A Side of Mayo Please!!

The past two weeks have been bizarre, scary, fun and just plain exhausting.

In a way those two weeks began about 14 years ago . . . I was told when I was in high school that I had juvenile arthritis in my left hip. Every so often my hip would ‘lock-up’ and hurt BAD! I never had much for range of motion, but it didn’t slow me down too often. So I learned to deal with it and remained pretty dang active.

Since then my hip has locked up so many times and I just ignored the pain and kept moving. But after so many years it wasn’t a big deal – just a painful one. Sean had been asking me for years to get it checked on - but I just told him it would pass and to quit worrying .

Well, fast forward to last October when my hip locked up the same way it always does. It bugged me for days and at night I would cry when I had to roll over. It wasn’t a big deal at the time – I had literally dealt with this hundreds of times over the past decade. The final straw was one morning during this October episode and I could barely get myself out of bed to retrieve Addison from her crib.

I could hear the little gal babbling away over the baby monitor and occasionally asking “Mommy?” Thank goodness, she wasn’t in a hurry to get out of bed that morning. But the whole time I struggled to get up, I thought to myself, “Wonder if there was a fire or some sort of emergency that I need to get her quick?” I wouldn’t have been able to do it. It took me about five minutes to get from the bed to my bedroom door. In an emergency I would have most likely been too late. THIS WAS MY WAKE-UP CALL. I needed to get this fixed.

So a few days later I was at our local clinic in hopes to meet with a doctor to see if I could be referred to someone who specialized in hips or arthritis. The doctor checked on my range of motion and discussed my pain with me, but he wasn’t convinced that there was too much wrong. I told him that I wasn’t looking for surgery or anything invasive . . . maybe just a magic little pill that would help my joint work a bit better. He kind of laughed and said that most hip problems are repaired with hip replacement surgery and that he wasn’t aware of that kind of pill.

By now, I got the feeling that he wasn’t willing to give me a referral. He sent me off for x-rays and when reading them he didn’t see too much wrong. Maybe a little irregularity in my joint, but nothing to be concerned about. We talked more about the size and shape of my pelvis than we did about my hip, because he was impressed that I was able to deliver such a big baby – which, let me tell you, made me feel like one tough Mama!! ☺

But back to the hip . . . The Doc said he had to send the X-Rays off to another location where they would be read – it was just their standard procedure. And he wasn’t convinced that I needed a referral to a hip specialist since I wasn’t interested in surgery. So, I left the clinic a bit less than impressed.

Two days later I get a phone call from the clinic asking me to come in the next day to meet with the doctor. I went in not expecting much. Afterall I hadn’t gotten anything I had expected during the last visit. The Doc explains to me that the Imaging Lab did see some issues and a few days later I was in Anchorage having a MR.

Halloween morning I received a phone call from our local clinic asking if I could come in and see the doctor. It was his day off and he was willing to meet me there whenever I could make it over. WHAT??!! I had never been so accommodated by a doctor before. . . It was weird.

I dropped Addison off at my Mom’s a few hours later and met the Doc at the clinic. He read the results (which were done by the Docs in Anchorage) saying that I had pigmented villonodular synovitis (PVNS). The Doc was fantastic. He had looked up as much information as he could find on this disease for me and was straightforward with me. He didn’t know much about this disease and he had already contacted a few doctors about my condition and was waiting to hear from them. I am just going to say it: I don’t like it when a Doctor claims to know EVERYTHING. And I appreciate the fact that he was candid and laid it out there. I also appreciate that he gave up part of his day off to talk to me. He eplained PVNS to me as best as he could.

PVNS: Basically tumors growing in the joint which can impact and sometimes invade your bone. The synovial lining in my hip has somehow decided that it wants to make tumors rather than lining. Rarely are these tumors cancerous. It’s not genetic but they do not know what causes it. 1.8 per million people have PVNS and there doesn’t seem to be anyone who claims to know much about it.

The local Doc told me that he hadn’t heard or thought of PVNS since medical school – so I was kind of a refresher for him. And I am pretty sure that he likes the idea that he’s in on something weird . . . which is great because he was helpful through this process – even though I never got that dang referral to a hip specialist like I had originally wanted!! Hehehe

Halloween night, a few hours after my last visit with the doctor I came home to a message on my voicmail from the doctor saying that the only doctor in AK that he’d recommend to me, wouldn’t take my case. Apparently he hasn’t had any experience with PVNS either. The other docs (University of Washington and a Boston Doc) wouldn’t touch it either. BUT the Mayo Clinic has the guy for me and he has actually had enough experience with PVNS that he’s written several articles about it for medical journals and is high in the food chain in the Orthopedics department of the Mayo Clinic The local doc also continued on that I could call anytime with questions and he’d do what he could to help. WOW – never had these services offered up from our local clinic before. Pretty nice!

Ad that brings us to the beginning of the crazy past two weeks . . . Which began on February 28th when Addison, Sean & I boarded a plane headed for the Mayo Clinic in Rochester, Minnesota to meet PVNS’ National Expert.