Spinal Stimulation

This post is long overdue…my apologies. About a month ago we flew down to Jacksonville, FL to start a new treatment for K. During our last intensive in June, another child’s mom introduced us to the idea of spinal stimulation. It is a relatively new therapy being used in kids with Spina Bifida and CP (although protocols will vary for the different diagnoses). After some research, talking with our PT at NAPA and a virtual consultation with the provider we decided what the heck lets try this.

Very simple terms spinal stimulation is done using an electrical stimulation unit (E-Stim), we place the electrodes on different areas of K’s body as well as directly over his lesion on his spine. The hope is that by using this unit to send impulses to different areas and simultaneously sending them to the affected spine area we can help stimulate these weakened nerve pathways.

Sounds pretty cool? We thought so. The thing with spinal stimulation is that you don’t really know what you’re going to get though. If you have been following me long enough you know that Spina Bifida can manifest so differently from child to child. So as with any treatment it is unpredictable and one size fits none. Currently there is only a handful of providers that even know how to set up this kind of treatment protocol. So we went to the lady herself, Gerti, who essentially pioneered this treatment.

K and I made a quick trip down to Jacksonville, FL. We had 2 appointments set up that lasted 2 hours each. I honestly didn’t know exactly what to expect but Gerti being the master of her craft has this down to a science. Day 1 was spent testing different areas of his body to see how his nerves functioned. We started at his feet and moved our way up his legs to see what kind of responses we got.

What we learned on day 1 is that K is high functioning in the sensory department compared to his motor function. Essentially he can feel sensations (hot, cold, pressure, and/or pain, etc) but the muscle does not fire. This lead to some challenges for us because in order to get the electrical stimulation to activate his muscles we had to crank it up to the point were the impulses became uncomfortable or even painful to him. Since this treatment should never be painful or uncomfortable for the child we had some challenges finding areas were we could activate the muscles but not cause him pain.

But Gerti, being the master of her craft, was able to find us some useful locations that he could tolerate. After day 1 we were sent home with some homework of trying to apply the patches and use the unit ourselves. Seemed simple enough…

As we all know it’s easy to watch someone who does something day in and day out and think, “no problem looks easy”. Well it went miserably that first night. I must have placed a patch in the wrong area and cranked the machine up too high and caused pain. Because before long K was sobbing and I was fumbling to get the machine turned off and remove the patches and it was just a very discouraging experience. So going into day 2 I was worried that this was a huge mistake.

Day 2 was spent practicing placing patches with Gerti’s help and learning about using the machine. After a much more successful time of me doing it I felt a lot better. That was it! We were sent home with all the equipment to continue treatment. For spinal stim to be successful you really need to be very consistent with use. Everyday for hopefully at least an hour a day. It’s definitely a time commitment and it takes awhile to see appreciable results, but we have faith in the process and are plugging away at it day by day. We are not perfect, we don’t get it done as much as I would like, but we are doing our best to keep up.

The biggest perk of going on this trip was we got to see a few friends! Some old friends from the military and our new friends from our summer NAPA intensive.

I will hopefully be able to update on the progress over the next few months, but it’s a slow and steady type of deal.