Is that a flare-up…?

Posted by Karen - July 6th, 2014

Posted by Karen

The saga of the leg continues…

As of June 25, a week and a half ago, my daughter Miranda was authorized by her doctor to start weight-bearing on her left leg. She had suffered a minor “buckle fracture” (type of hairline crack) in her tibia a month prior, and by that point was allowed to start walking.

The good news is that when Miranda started putting weight on the leg, she experienced no pain at the fracture site whatsoever – in fact, no negative symptoms of any kind at that spot. I am satisfied that the fracture is doing as well as could be expected. The bad news is that Miranda simply could not stand straight with her left foot and ankle at 90 degrees, because she couldn’t get her heel down. Just not AT ALL, no matter how hard she tried. Within a few days she had overcome some initial stiffness and was able to get around the house, but her walking style was very awkward and not at all comfortable. Specifically, she would thrust her left leg straight out in front of her, then sort of “hop-shuffle” her right leg up behind it (though never actually meeting the left leg) and repeat. This enabled her to not have to push her foot and leg to a 90 degree angle. As you might imagine, this was not an effective way of walking, and caused her knee and hip joints on both legs to tire quickly.

We figured at first that this was just a temporary phase. We thought Miranda’s heel would come down, bit by bit, and that within a few days she’d be back to walking normally. Unfortunately, that didn’t happen. Instead, she just kept having to walk in that awkward way; we saw really no progress from working every day at bending the ankle. Finally I reached the conclusion that we were going to have to get some physiotherapy.

Physiotherapy for people with Fibrodysplasia Ossificans Progressiva is a dicey thing. A person with FOP can NOT get passive therapy, where a therapist digs into the muscles to move things around. That type of therapy can, itself, cause an FOP flare-up to occur. But, a person with FOP can engage in active therapy, where she moves a particular joint or limb on her own steam and to her own comfort level. Now, technically speaking even this type of therapy could cause a flare-up, but in deciding what to do, you have to balance the options… In Miranda’s case, she was putting so much pressure on her other leg joints from her maladaptive walk that I thought the risk of a flare-up from active physio was the lesser risk.

Anyway, I took Miranda to see our doctor, who agreed that the walk wasn’t looking good, and she gave us a referral for physio. Since no physiotherapists in the Vancouver area know anything about FOP anyway, I decided to take Miranda to a place nearby our home which happens also to have pools for hydrotherapy.

I took Miranda for a physio appointment this past Friday, and I must say that it was a great experience. No, the therapist hadn’t heard of FOP, but she quickly grasped what I told her about it, and was very careful to make recommendations appropriate to the circumstances.

Here’s the thing, though… The therapist very gently felt around Miranda’s calf muscle, as she pointed out that the calf muscle itself can be tightened up by immobilizing a leg after a fracture. In the process of her examination, she found a spot on the lower end of the calf which felt quite firm and a bit warm. It wasn’t visibly swollen, but it was definitely a tight spot, about the size of a Canadian toonie coin. I hadn’t noted this before, as had been focusing lower down, on the ankle itself.

Oh no. No, no, no no no no no….  At first, I did my utmost to convince myself that this is NOT an FOP flare-up. But as time has passed since that appointment, I’ve reached the reluctant conclusion that it probably is. Based on the smallish size of it, the fact it doesn’t hurt Miranda and the only faint extra warmth, I’m thinking it’s probably a flare-up in the later stages. My guess is that it was likely at its worst a couple of weeks ago, back before Miranda was even weight bearing.

I so didn’t want this to happen, but it is what it is. So what are we doing about it? Not much. At this point we’re carefully doing the exercises the therapist gave us, and waiting to see how this resolves. Miranda still hobbles around the house (though we’ve figured out a slightly better “toe” style of walk), and when we go out in public, we take her in the manual wheelchair which we rented. We’re going to have to wait and see what happens after the muscle tension from the probable flare completely dissipates. Miranda may yet get some movement back. If she doesn’t, then we’re going to have to look into a shoe with a raised heel, or else maybe some kind of crutch or cane.

Sigh.

Miranda out and about recently, on Canada Day.

Miranda out and about recently, on Canada Day.

PS – FOP is a terrible thing to live with. Please help us raise money for an effective treatment. That muchly desired medication might be just around the corner – a drug trial is planned to begin within the next year! To help us out, please donate to our July 26th fundraiser, the Walk for FOP (all proceeds go to the Canadian FOP Network, which funds FOP research). To donate on-line, go to www.walkforfop.com. Or, please make out a cheque to the Canadian FOP Network – if you reply to this blog post, I’ll contact you about sending it to me. Thanks!

 

2 Responses to “Is that a flare-up…?”

  1. Saskia says:

    Ohhh, we so hoped this wouldn’t happen… It’s the exact thing that happened with Yorick’s lower arms after both fractures, but as those fractures were so much more severe I didn’t tell because I didn’t want to frighten you. Keep your hopes up!
    Saskia

  2. Marilyn Hair says:

    Oh, Karen, I’m sorry to hear this. I hope therapy will help and Miranda will improve. –Marilyn



Leave a Reply