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


Monday, March 12, 2012


I have been going back and forth about my options with my failed implant.

I often find when I have a decision to make, no matter how bad the choices, I feel better once I pick a side. This time I cannot find a side that lets me feel like one part of the choice is better then any other. Each option makes me feel that I am removing hope for myself. And somehow that feels worse then when the withholding of hope is caused by another person (or doctor.

I can have the implant removed. Because it is attached to the covering of the brain I run the risk, albeit small, of brain damage.

If I have them put in another, which may not even be a possibility because of insurance coverage for something that is completely experimental, even if it is just a redo, I run the risk of brain damage if something goes wrong.

I run the risk too of it not helping, a normal risk of any of the surgeries/procedures I have tried throughout the years so that risk almost doesn't count.

If I just have them remove the battery that powers the implant, it is the easiest of options, however...If something happens to the wire to which it is attached, they no longer make that wire. Any chance of reattaching the implant would mean completely removing it.

Doing nothing is the best option. Well, maybe not.

I have had a few episodes, as recently as last night, where I feel the stimulation. It is a feeling very different and in a different configuration then when I get a 'tic' from the anaesthesia dolorosa.
It could be the sensory cortex has retaining the memory or the implant refusing to turn off, or stay off. (The medtronic rep did not think that could be the case but why not? I have had lights come back on even after I have turned off the switch. Sometimes current happens no matter what you do to stop it.)

The thing is, if I do any of the above, I court danger, dangers that could result in my no longer being able to care for myself. If I do nothing, I run the risks of still getting stimulation and not knowing what, if anything, that could portend.

I think about geting an arteriogram. They are better then when I had them many years back. Then the tiny extra vessels I have throughout the left side of my brain were not visible. It was only in surgery that they were found (and Dr. Osterholm, the first surgeon, got rid of almost all of them stopping the pain for three months, until they grew back).

I am allergic to the dye and the test carries potential risks of its own.

I cannot think of a good option. My neurosurgeon writing in an email that no one in the world would have an answer for me does not help matters. (Although honesty has its place and is better then false hope.)

So, one minute I decide I will have it removed, the next - no, I will do nothing, the next, try the arteriogram. Back and forth, back and forth. Then I decide making a choice might be the worst thing I could do. Almost all of the choices, except the arteriogram, could end any other option.

Then there is my theory that I have floated for years; blinding and paralyzing the eye. No movement means no touching against the lids. I think the 'phantom pain' is 'set off with each movement of the eye. The blinding is necessary because the paralysis of one eye causes double vision.

We have tried before, paralyzing it with Botox and sewing it closed. The botox wears off in about 2 -4 months. It seems to help but I do not want it sewn closed again and the doctor definitely has said he will not do that.

Maybe I could wear a patch. It would be painful in its own way but something, maybe, I could get used to. The ophthalmologist who has given me the botox before is not sure he is willing to do it again. No one wants to blind and paralyze a seeing eye, which could be done permanently in an operation. It is a seeing eye, even though legally blind - from lazy eye not the pain or tn. Another conundrum. Paralyze it enough, does it start to atrophy, ultimately causing a loss of vision? Blindness, if G-d forbid something happened to the right eye, is not a choice, it's another horror.

No answers only tons of questions.

I cannot let the pain, the disability, the increasing decreasing of what I can do and for how long because the eye pain is going back to its pre-implant levels, make the decision for me. I have to let my logic and intelligence do the picking.

And neither them nor I want to.


  1. Hi Carol, sorry to hear of the eye problems - they seem to have worsened over the last few years.

  2. Hi Tina,
    Actually it was somewhat better, not enough to work but I was taking less meds. The problem is for the last few months since the implant failed.