"Suffering the Slings and Arrows of Outrageous Fortune"

We got Em into the ortho on Thursday. Well, she saw the PA but it is the PA of the ortho we want and like and we like the PA as well, so I was happy. My husband has a good handle on which doctors are good to work with, who is better than competent and who is trustworthy, so let’s just say we knew who we didn’t want. (It is all one big practice so most of the time it is the luck of the draw, even if you can claim one of them as your doctor. One bright spot, the ortho who told her she could be in the circus in one breath and then in the next breath claimed to have invented the best way to operate on EDS patients is thankfully no longer there, so we at least don’t have worry about seeing him! Honestly, luck of the draw was an improvement over him.)

After a painful, albeit quick exam, the PA ordered an MRI. If she were ‘normal’, we might wait and see if it will heal on its own, but she isn’t normal, she can’t put weight on it and she is in a lot of pain. The PA seems to be leaning towards a cartilage tear, which lines up with what we are thinking. Although, it could be a cartilage tear and other soft tissue damage, we will just have to wait for the MRI.

Trying to get the MRI scheduled turned into a bit of ordeal – played phone tag with the office, only to find out at 6 pm on Friday that central scheduling couldn’t schedule it (even though we were told to call them ) because they didn’t have the order. Nice. Apparently the MRI can be done at the open MRI at the rehab building, which is scheduling as early as today, or at the closed machine at the hospital, which has no opening until the 15th at least. Seemed like a no brainer except for the fact that no one could schedule it for us!

I just (finally) talked to the nurse and we got the MRI scheduled. Tomorrow (Tuesday) at 1:30, at the rehab building. The follow up appointment is 2:30 on Wednesday. The PA told us he had openings ‘every day this week’, except Thursday and Friday – but if the follow up was scheduled 3 days after the MRI like he told us it would be, I was worried that it would be into next week before she was seen again. The nurse said it was no problem and just scheduled us to see him the next day so we don’t have to wait until next week to see him, which makes me a lot happier than I was over the weekend!

Her knee seems a little better, though. Or, at least better than she was Friday evening after being at Co-op all day. The PA told her she could wear her immobilizer to help stabilize her knee. So, she did. It helped – made it so she could hobble around with crutches when she couldn’t be in her wheelchair. She was in her chair quite a bit and was generally pretty responsible.

But, when we got home late Friday afternoon, her leg was crazy swollen. I have never seen her swell like that – she had no ankle. It was probably a combination of having the immobilizer on all day and being up on her feet too much, but it could also indicate other things going on. So, she elevated it the rest of the evening and most of the next day and was packed in ice from thigh to toes.

I was particularly concerned because she was having some indications of RSD developing. But, by Sunday, the swelling was down, she could feel her toes again and her feet were the same temperature. She does have RSD pain from her knee down, but that seems to just be a normal part of any major injury for her. We will start some desensitization exercises and try to get ahead of it. Unfortunately, the ice that is needed to help with the pain and swelling can trigger RSD (and does for her) so no more ice.

Now we just wait until Thursday to see what the MRI shows. Hoping she can avoid surgery…


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