Update #4 - 8/10/2011:
Blaise’s appointment yesterday went really well.
We arrived at the hospital just in time for his MRI at 8:30AM and he was finished just in time for his appointment with Jennifer Marshall, Dr. Glazier’s PA, by 10:15AM.
He did such a fantastic job! The MRI was about 30 minutes long, and the radiologist only had to re-do a picture once (Blaise got a sudden urge to itch his right knee). :)
He explained exactly what he’s been feeling in his legs to Ms. Jen:
- His knees feel wobbly.
- Sometimes numb.
- When he takes steps, he feels off-balance.
- The back of his legs are painful when he stretches them out.
- He cannot walk in a straight line, with one foot in front of the other, without feeling like he’s going to fall.
Ms. Jen said the MRI showed that the sarynx (pockets of fluid) in his spine are actually smaller than they appeared in the MRI before surgery, which is a good thing that is way ahead of schedule. They didn’t expect to see a change for some time, and still don’t expect for them to go away completely for months from now (if they do, in fact, ever go away completely). She explained that the problems occurring with his legs/knees could be from his spine adjusting to the CSF flowing properly (we certainly hope so!). She thinks his legs/knees will work themselves out as his neck gets less and less stiff from surgery and he begins to be his more-active, six-year-old self again.
If he is still having problems after he is fully recovered in his head/neck, physical therapy will be next.
Currently, he is still on Ibuprofen around the clock and is expected to remain on it for a few more weeks. After that time, if he continues to have headaches (like he used to, and like he still does) he will be referred to the MUSC Neurology Dept for headache management. I don’t know if that means medicine or different relaxation techniques to prevent the onset of a headache. Right now, he gets one or two headaches a day - sometimes from getting too hot or laughing a lot or dancing with Posie, but mostly he gets a headache when he is about an hour away from his next dose of medicine.
Ms. Jen thinks the headaches are an effect of the surgery, and as his body gets back to normal and gets used to the CSF flowing properly, he should get less and less headaches. That would be awesome.
He will be scheduled for another MRI in the next few months.
He has such a good attitude about it all. He wants to show everyone his scar and hear their “oooh!!”s. He loves being told he’s so brave and tough. Rightly so, because he is!