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Injection site question
Hey everyone –
I hope this finds you all doing well.
So, in January, I had my 12th overall injection. All of them have been in the lumbar area. Last week, I had my 6 month PT assessment and although overall the scores are fine and perhaps slightly increased, I had a drop in the right arm. I know there are “one of those days”, but I work out a lot as I’ve indicated in other threads here – about 2 hours a day on average and one land and one aqua PT appointment weekly – so I’ve noticed certain motions or overhead reaching has been slightly more challenging for months. Perhaps I just scored or did a motion high enough to earn the point on the Hammersmith or RULM last summer and was just under this time.
In talking with my neuro at Hopkins, they advised that analysis has shown a higher concentration of Spinraza around the injection site. I’ve been very fortunate and have seen positive muscle growth and/or strength in 4 different areas of my legs since starting treatment in 2018: anterior tib, VMO, quad, and hip flexor. But little to no gain, and even a slight decline in what has always been my stronger arm. Don’t get me wrong, I realize how fortunate I am, so I am not complaining.
All this leads to my question (I know, finally you’re thinking!!): has anyone discussed the option of a C-spine injection with their neuro? Is this even possible? I mean, if there is a higher concentration of Spinraza in the cells nearest the injection site and I’ve had such positive results in my legs, what are your thoughts on considering, say one out of every three maintenance doses in the C-spine rather than the lumbar region, just to see if there are similar upper body, arm, or shoulder improvements? Heck, I’ve even suggested, only half jokingly, that they hang me upside down for a couple of hours after the lumbar injection.
Apologies for the length? I welcome your thoughts, questions, and any feedback.
Stay well and stay safe.