My book.

My book.
"Fascinating" Stephen S. Hall. writer, N.Y.Times magazine. "Hard to put down." A.C.P.A., American Chronic Pain Association.

Total Pageviews


Tuesday, October 18, 2011

Fear and hope.

Tomorrow I go to the neurosurg about my stimulator.

As I wrote a few weeks back I had to turn down the strength level of my brain implant because of a 'tic', one I always assumed was from my anaesthesia dolorosa (phantom pain).

It started where it usually did, at the tip of my left nostril but then it grew and grew, turning into tingling and spider webby, going up to my scalp and down to my chin, and harsh, very, very harsh.

I have it on now at the lowest level of stimulation possible. I have changed the amount of time it comes on so it now is on half a minute every 2 hours, or 6 minutes per day. Since I changed it to this almost completely off level, I have had two small, very small, 'tics" - starting at the tip of my nostril then spreading quickly out - up towards my eye and down into my chin area. Could I really still be feeling something? It is still on so I guess the answer is "yes."

The upside is that having it almost off has proven it was helping. That is the good news/bad news.

Good because I know that it was, and is worth, keeping in and on.
Bad because to figure out what is wrong with it they have to turn it back up to a much higher level in order to have the computer 'read' it to find out what is wrong. That scares the heck out of me.

I am very afraid that the feeling that made me turn it down in the first place will come back with an even greater kick because it has been turned down so low for a relatively long period of time.

I have the other big worry. What the heck is wrong?

Is it merely the battery that was replaced a few months back? That would be good because fixing it is relatively easy. Is it the wires or the computer chips? My stomach clutches and my mouth goes dry thinking about that.

If it is the stimulator it would mean taking it out - pulling off the computer chip that is now encased in scar tissue and very intimate with the covering of my brain, pulling out the wires that have gotten very comfortably ensconced in their own scar tissue cocoon. (And, hopefully replacing it.) One doc has said he doubts the insurance would cover it if it needed to be replaced (since it is completely experimental).

My current neurosurgeon first said he would not be willing to fix it but then said, while he was replacing the battery, he would do it, if that was ever necessary.

I figure maybe you should trust a doctor at their first word.

The surgeon who put it in is in Colorado. I do not have the airfare nor a catsitter (if he would be willing to do it), And maybe he would not want to do it again anyway.

So, the appointment is tomorrow. I know something is not right. It is a long way from knowing that to seeing myself on a plane to Colorado; but it is very hard to keep my mind from taking the trip. I'll let you know what happens.


  1. Hello,
    I live in Colordo and would like to find the Doctor that Carol is coming to see. I would like to be in touch with Carol while she is here if that is possible. Hopefully Carol, you might be reading this comment. If so, could you email me. Thank you so much

  2. Hi Cheryl. Right now it looks like I won't have to see him. I will be updating about it.
    Thanks. Carol