I saw the neurosurgeon last week about the problems with my stimulator.
I sat next to the company representative as she spoke on the phone with a company engineer. I could not tell what the other person was saying but Susan's (pseudonym) expression gave me an idea of the the way the conversation went.
Susan: "When I check out her stimulator using the main computer I get numbers that don't make sense."
Susan: "She had that terrible burst of stimulation a while back and has been afraid of it happening again. "
Susan: "Since I am getting information when I check it that does not seem to make sense, can you give me an idea what might be wrong or what we should do about it?"
Susan: "Thank you."
Me to Susan: "So?"
Susan: "He said, 'If it is working, it is working. And if it isn't, it
Oh. Okay. That did not put me much further ahead then all the times my questions have been answered with the all-purpose "Idontknow."
"Why do I still have the eye pain? Will the stimulator help? Are there drugs or other treatments? There must be at least one other person who has this eye pain, what do they do?
I know the doctors and surgeons do not enjoy, at least most of them, saying they have no idea how to fix me or why the pain remains. Nevertheless the ubiquitous "Idontknow." is usually there, and very frustrating.
When I had my first implant, in 1986, I was given a main computer that usually only the doctors have. That lets me change a number of the parameters: how fast the stimulation, how wide apart the pulsing, the strength of the stimulation. Because I can program it myself I am trying new combinations I have never tried before. One change, making the pulses much more close together, has changed where I feel the stimulation. It may finally be getting to the eye and eyelids, something it has never done before.
This is one of those, "You can turn it up if you want, change what you want because we have no clue of or what might work for you using it." or "Idontknow. Do what you feel okay doing."
It is also what many of us say or feel. "I am used to what I am doing for the pain. It seems to be working so why change it?" (or for me: "I am not sure it is helping but in case it is I do not want to make any big change.")
A few months ago, when out of the blue I had this terrible surge of stimulation, so strong it scared me; enough that I was afraid to have the unit on for more then the minutest of stimulation, I was afraid to increase it, at all. I did not know if I would ever have the nerve to turn it higher, or get a new one put in if I had to.
Now I have made the 'big change" I feel okay. I can feel the tingling; but it is not bad and should go away with time.
I have to admit even though I seem fine, I am afraid of it. When you have one of these implants you are supposed to always carry a magnet with you. This lets you turn it off immediately, in case of trouble. (You hold the magnet up to the battery and it turns off the entire unit.) I stopped carrying mine years ago. Now I never leave home without it. It is my 'just in case' talisman.
I held onto the tried and true and known to me treatment while fearing to make any changes.
It looks like the change(s) I made may help. Sometimes as fearful as it feels, it is necessary to brave the fright and forge ahead. You never know if the right treatment, drug, even surgery, may be right around the corner.
Gritting your teeth and letting go. Sometimes the best plan of all.