Sorry I've been MIA for several weeks. There just hasn't been much going on in my recovery and I've been pretty down about my coverage not improving. I've been reprogrammed twice and the reps still can't get the stimulation to the left AT nerve without involving my jaw.
So what has changed? I am able to sleep in a bed every night but it's still uncomfortable. I'm more active but still tire quickly. I had a few new programs added that partition each lead into two parts so that I'm able to control the balance of stimulation between the back and front of the lead. I'm eating solids again but only sparingly because it still irritates the left lead to chew too much.
Next week is week 12 and the supposed date that I'm totally healed. My lack of coverage leads me to believe that my lead placement just isn't working and will need to be redone. This is disheartening because this surgery was very hard to recover from. I put so much hope into this stimulator because the headaches dictate my life. To not have it work properly is nothing short of devastating. I'm very upset with my doctor because the lead placement I have is not what we discussed and he hasn't been helpful during my recovery period. I plan to dedicate an entire blog post to this later because I've learned a lot about what to look for in a doctor when seeking an ONS. As such, I will be seeking another doctor to take over my care and evaluate whether or not I need an alternate lead placement.
I want to reiterate how much faith I have in the ONS technology. I do believe that nerve stimulation is the path to pain relief for me, I just don't have the proper implantation. Until then, I'm just trying to take this disappointment one day at a time. I can't change what happened, but I can change how I move forward from here.
I'm really sorry to hear this. I was hoping that things would have improved for you. Look forward to a future post about the process and all that you have learned. In the meantime, I hope things turn around for you.
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