This afternoon we got a call from Jack's surgeon in Birmingham. He was looking at our chart and noticed that the numbers were not very good out of cast. As you may recall, this last (the 7th) cast was the best one we've ever had. Despite our frustrations, we were optimistic that this was finally the beginning of the end. We could see that his rotation had resolved, which is a huge aspect of his condition, and the angle had gotten lower than ever before. To hear that he was discouraged was totally unexpected and we were devastated that we might, yet again, be facing a battle to keep going.
We suggested an out of cast x-ray here, to be sent down to him. I then asked about whether or not we should keep our appointment and just plan on meeting with the brace guy, and whether or not he still recommended a providence (night time) brace. He said he had given up on long-distance bracing and is no longer doing that for his patients. He wants us to stay here. (Opening a whole Pandora's box of problems for us, but that's for another time.) However, he said, if the out of cast number was not below 35° we were done. No cast next week, no brace down there, that was all he could, rather would, do for Jack.
It was about that time that we headed out the door for his neurofibromatosis clinic appointment (great timing, huh?). We went to the ortho clinic first and had his cast removed and, of course, no one had called in the last two hours to actually order the x-rays. So, we called down there, spoke with the ortho clinic here, and tried to coordinate it the best we could - no luck.
Finally, in a last-ditch effort, I suggested calling our primary care doc. (There were no doctors in the clinic who could write an x-ray order and our surgeon didn't have rights at the hospital). Sure enough, Dr. H came to the rescue, faxed the order over immediately, and saved the day! They heard us in the ortho clinic and said not to bother going to radiology, that they could do the x-ray right there after his cast was removed. Done and done.
We then rushed up a floor to the NF clinic, went to the wrong desk per the information girl who had no idea what we were talking about, and finally found the check-in. We met with the nurse practitioner in neurology. She was incredibly nice, great bedside manner, but I had to suggest things like using the UV light to check for spots.
We discussed the fact that there is no medical history for DH's family, except that it was noted that the men seemed to have a problem with kyphosis. She examined his tibial bowing, felt for his bumps under his skin on the neck/skull area (she thinks she found one, but said sometimes they hide and then come back, that it's not uncommon).
We also discussed the possibility of rickets causing his leg issues and she offered to do a wrist and ankle x-ray to be sure, since that is fairly non-invasive and we were doing leg x-rays anyway. She ordered a vision test for him, to check for the lisch nodules and optic glioma, and said the standard protocol is to see him once a year unless something comes up. She said, we're pretty sure he has it - he has six spots, so he's right on the edge. I don't want to make any definitive calls without talking to the doctor about his spine because while it's well-documented in NF, it looks like there is some family history there that may explain it. (Not at ALL what I meant by bringing up the kyphosis in DH's family - I meant to imply that perhaps it was undiagnosed NF1. Apparently she got the wrong idea there.)
So, we are waiting for the x-rays to check on his tibia, and I imagine, to see what the neurologist says - but it looks like, for the time being, he has NF1.
I also have the x-ray pictures in a jpeg and just cannot tell what the numbers are. It's going to kill me to wait until Monday to get numbers. I have a hotel to book and plans to make for Wednesday - and if he isn't going down there, I need to call and get in to our local doctor and figure out where the heck we're going to get a decent brace in this city.
And, so, here I am - waiting, once again.
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