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Friday, May 6, 2011

How far would you go for a possible cure?

Yesterday was a really bad day.

I wrote here and elsewhere and ignored the eye pain at every new keystroke. By the time the pain took over so I had no choice but to stop, it was too late. An hour later, two hours later, three hours later, the pain continued. I did not know what to do. I stayed in bed trying not to get up to do anything because as soon as I turned or stood up or, heaven forbid, looked in the fridge or elsewhere, the pain increased.

It's the eye, dammit! Why can't they do something for this!! I know they can. I just know they can.Same thought, no matter how many times I think it and hear their answer, "No. We cannot fix it. We do not know why you still have it and we do not have a clue as how to help you. I am very sorry."

Well, I know how to fix it.

At first I thought about having them take it out. It is legally blind, from lazy eye as a child. It would not be like removing an eye that I relied upon for vision. Remove the source of the pain you remove the pain. I talked to an eye doctor about it, even wrote to Dr. Schatz, the neuroopthalmologist who saw me at the beginning but with whom I had not spoken in years. "Carol, it would be unethical to remove an eye that sees, no matter how limited the sight in the eye." That was it. Any other doc I talked to said he was right. All assured me no hospital would ever let them do it even if I found a doc who would.

I emailed a reknowned medical ethicist. I described the situation: I had all possible procedures and treatments. Removing the eye was a last ditch effort to get me "able". To my amazement he replied almost immediately. Based on what I had written he said "I would testify on your behalf if you try to go ahead with this."

Thinking about it I realized I had glossed over a major issue. The pain is from movement of the eye. If you put in an artificial eye it would have to be connected to the muscles that seemed to be the cause of the pain in the first place. No. Removing the eye does not make sense.

So I developed another theory.

What if the eye were blinded and paralyzed? Granted one effect would be the same: loss of vision in that eye.

My ophthalmologist is a good guy. If what I suggest makes sense and is logical he will go along with me.

We tried a couple of times. A shot of botox (yep, what they use to reduce wrinkles) into the back of the eye. It paralyzed within a few days but still retained sight so I had severe double vision. The only answer - sew it closed. Funny how it was a disgusting thing to do when necessary for the health of the eye. When voluntary and a possible answer to the pain, then it becomes acceptable. It was also temporary. The botox wore off in about 3 months. Then he would open the eye. Each time somehow or other it refused to remain closed enough to mimic blindness. There was no way to know if my idea would work.

After 3 or 4 attempts we gave up on it as impractical. Plus, he was not sure he would be willing to do it permanently, because it is a healthy eye.

Yesterday I found myself thinking again - let's paralyze and blind it. Maybe he would agree this time.

Then I thought: what am I willing to do to stop this pain? How far would I go? I hate the disfigurement from the medical malpractice. Maybe because it is already there I was (am?) willing to do something that would disfigure me further. Is there a point beyond which I would not go if someone said 'do this and it will stop the pain. You could work, be out in the world. have a real life.'

I do not know. Yesterday I would have accepted almost anything. Today when I am being smarter, stopping my eye usage before it gets out of hand, maybe I would still say "Yes. Yes. Whatever it is, if it stops the pain. I am ready."


  1. Jackie writes:

    I know your problem is so complicated and specialized that there may only be a handful of doctors worldwide who know how to treat it -- but you asked "How far ...?" , and what I would do is try to track down those doctors.

    This is how I would start the search:

    1. Go to "Google Scholar" and type in TN or a term that describes your condition. The more specific and detailed the better.

    2. Make a note of the authors who write the most papers on the subject, and/or the authors whose work is quoted most often in other papers on the subject.

    3. Contact those authors and ask if they can help you, or if they know of anyone else who can help you.

    Also, I've read your comments about pain meds, but I found the following article which states that the psych. med. carbamazapine can help (or at least dull) the pain from TN. (Although, it comes with a whole new set of side effects, as does everything!) Is that something to consider, or have you tried it already?

    The doctors quoted in that aao article might be worth contacting.

    Please let me know if I can help you look online for a doctor, or find a medical article, or anything else.

  2. Jackie, Thank you. I have never heard of google scholar. I will definitely go to that.
    My problem with the ones who are quoted the most, written the most is that those names are the ones I have seen. Peter Jannetta, who paralyzed my face, the surgery is named for him. William Sweet wrote the textbooks as have my eye docs.
    I have been on tegretol but had to stop because of a white blood cpunt issue but have been on neurontin for many years and that is a help for the rare 'tics' I still get. (anticonvulsants are usually the first line and tegretol, in particular, is (or at least used to be considered) a diagnostic 'yes' if it worked.
    I am overwhelmed by the time and effort you are giving to me by your suggestions and work.
    Thank you so, so much

  3. Jackie writes:

    I guess my posts are still going straight to your spam box!

  4. They are and I can't imagine why. It's an automatic process. Maybe once it decides something in a note is spam, that's it for the author of the posts forever. ): but now I know to look for you.
    Thanks Jackie. ((*_*))