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

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Wednesday, May 30, 2012


I have to see the neurosurgeon today. We will talk about the failed stimulator. I feel like I do not know what to do; but I do. I think I just need to have the battery removed, which is not a big deal. Usually they give you at a minimuum a sedative but I convinced the doctor to just give me a shot of novacaine at the site of the battery, leaving me fully awake and aware. It hurt, for sure, especially when he had to pull and yank to get to let loose of the scar tissue to which it had become intimately attached. I would like the wire out too but that might require more then a shot and I want to be able to get off the table and be done with it.

The thought of that sends me into a tizzy: my stomach clutches, my jaw clenches, and all of me cringes.

I do not worry about if there will be discomfort again, the battery is only a year or so old, any attachment it has to be should be minimal. I worry about what happens now? What happens next? And the biggest worry, what if there is no next.

If I do this, that is the end of it. All hope is gone, the implant is essentially gone, even if the chip is still attached to my brain.

Dr. Sharan and I will talk, I have an almost hour ride of the train to think, more, about it, as though it has not been one of my main issues of obsession since it started to fail.

I just did not know how well it had worked. Now that it has been off for a few months, and new and different issues pop up, I am even more light sensitive, the lid swells whenever it wants, which it has always done, only now more and with more discomfort, my eye time has been reduced whenever I do consistent eye work, I want to write this in one fell swoop, but the eye is telling me, do not be an idiot, stop, cme back later. But later feels like too late, because later will be after I amke the choice.

It is not as though I cannot call and cancel if I have a date for the battery removal, but what is the point to keeping it in if I cannot turn it on, Maybe removing it is the best idea if only so I can no longer be tempted to turn it on.

I am frustrated, annoyed, angry,...scared.

I have no noral for this post, today is a post of venting.

Friday, May 25, 2012


From the news: "Dr. Sharad Shripadrao Pandit in Birmingham, England was accused in Coroner's Court this week in an extraordinary case of alleged malpractice. The parents of Alina Sarag reportedly called the GP more than 50 times about his ailing over four-and-a-half months. They testified that Pandit accused them of mollycoddling the girl and said that her symptoms were the result of being "lovesick." She then died for tuberculosis."

It boggles the mind and yet it does not.

How many of us have had the same experience of a doctor repeatedly ignoring our symptoms, and even signs of disorder and possible disease?

I found this article at another site, not medical but legal. The responses were interesting in that many wrote the same reply: Why did they continue with this doctor?

It is a good question, one I have asked myself when I have stayed with a physician who unquestioningly did not have my best interests at heart.

A few years into the trigeminal neuralgia, after the first surgery worked and then failed, my Philadelphia based neuroophthalmologist suggested I see a doctor closer to where I lived, in NYC. I adored my doc but it made sense to leave him.

Unfortunately he did not have a recommendation. I ended up with Dr. Barrett, whose name my mother got from the daughter of an acquaintance of my hers.

The experience with him was awful.

Years later I read his chart notes. "There are days like today when I believe in her pain." He never said that to me and it made no sense: the surgery proved I had trigeminal neuralgia, as did my signs and symptoms. He was erratic, saying things like "If you jump out the window you will only break your ankles because we are on the second floor." in response to absolutely nothing about jumping out a window or hurting myself, or when I commented on his seersucker jacket "I like your coat.", saying "You mean I don't look professional?" I tried to ignore his strangeness, hoping he could help me. I stayed with him, not knowing any other doctors in NYC. Had he said "I think you are a malingerer." or "I don't believe in your pain." I would have gone running back to Dr. Schatz.

After about a year, with no benefit from anything he suggested, I called Dr. Osterholm, the surgeon whose operation had worked. He agreed to redo it. Once I was back in the hospital he changed his mind. "I want you to have a thermocoagulation rhizotomy (killing the nerve with heat) instead. It is less risky." Then he added the killer: "I don't know how to turn on the machine. Dr. Martinez has to do it." I neither liked nor trusted Dr. Martinez but Dr. Osterholm replied to my repeated entreaties "Please can't you do it?" with his mantra "I don't know how to turn on the machine."

Instinct kicked in, as with the above neurologist. Get away, get away quickly. But the pain made me stay. Uncertainty made me stay. Feeling helpless and caught made me stay.

I get why the parents in the story stayed, and tried and tried to get this doctor to respond. They trusted him/they felt ensnared in the feeling of 'this is my doc, how could he not care, how can he hurt me so?'

Too many stories, in our own lives, and in the news. We need to give the docs less power. We need to remind ourselves that ultimately we are in the driver's seat. And with that comes the answer to 'why didn't they call another doctor?' And the courage to pick up the phone and find someone else.

Saturday, May 19, 2012


Today is a bad day. I find the stimulation that failed was doing more and more then I ever realized. I awake with the eye swollen, already in discomfort. While the stimulator was working I needed to use my eye before the pain spoke up.

I was supposed to go out and do some politicking. I was looking forward to it, a chance to be outside and meet new people, be a part of, something way too rare in my life. When I awakened my eye said No. This is not a day to use your eyes. Already I am hurting, it can only go downhill from here.

I find I make my decisions now on how much codeine will I have to take if I do thus and so. Is it worth it?

Angry at myself, at the pain, and what my life has become because of it, and how much harder it is now that the implant failed, I need an answer. I have to do...something.

The implant has been off for weeks, months now I think. Sometimes I still get a tiny flicker of stimulation. Tha Medtronic representative tells me there may be a short circuit, other people have also called to say even when off they can feel the stimulation.

I feel it less and less, almost completely gone by now. I remember why I first turned it off, why I call it 'failed'. The stimulation went awry, horribly strong and not where it was supposed to be. It had scared me and hurt me. I had to turn it off. One day the sensation almost brought me to my knees. I was truly afraid of it.

I wanted to go this morning. I did not want to take more codeine. I did not want the extra pain of being with others and having to use my eye, a lot. I also did not want to be alone. I see myself getting back to the going out less days, not wanting the pain, not wanting the drug or drugged sensation.

I went to my bureau drawer and took out the computer for the implant. The one that turns it on and lets me choose how it will work. I searched for the magnet that you are supposed to always carry with you, a just in case, the magnet immediately turning it off when it comes close or in contact with the battery in my chest. The magnet was not where I remembered putting it. It was not a frenzied search but a desperate one. Out of the corner of my eye I found it. Eureka!! I hurried back to the bed where the computer lay. I put the magnet down, a few feet away but close enough if I needed it quickly. My hand reached for the computer and the 'on' button.

Wait!, my mind yelled out. Remember how it felt when it was on? Yes. I do, but I will put it on at the lowest level of stimulation. That should work. And what level was it on when it did those awful things? Oh right, it was on the lowest level possible. My face scrunched up, Oh (*&%#. Do you still want to turn it on? I did but the fear outweighed the need. I picked up the computer and put it back in the drawer.

I have said many times, to many people, and here too, "Do not let the pain make your decisions for you as hard as that may be." I almost fell into that trap today.

Sometimes the pain is so loud it is the only sound that gets through.

It is very hard to do but when it happens we need to find the pillow within, whatever that may be: a voice, a memory, a feeling, a something specific to you, strong enough and loud enough to drown it out.

Wednesday, May 16, 2012


We have all been asked to rate our pain. Most of us are familiar wiyth the following rating scales.

They make sense if you are a 'regular' person experiencing acute pain. For some with chronic pain it may be appropriate, but I think for many of us it is close to useless.

I say this not because our pain is so different then that of a sprained ankle or a broken arm. Our pain tends to be different because although it is chronic and sometimes constant it is also variable.

When I go to the pain management doctor's office I am immediately given a form to fill out. There is a diagram of a body, front and back, left side, right side. I put a circle around the left eye where the pain now resides. How bad is the pain, rate it from 1 - 10 is the other question on the page.

I cannot answer that question, not with a 1, or 5 or even 10. Right now, at this moment, I have not used my eyes to read or for any extended usage, having driven for a while to get there and then doing nothing, right now it is a 0 or a 1. If I read a short article before they call my name, it may be a 3, if I was at home and did not heed the pain's call; continuing to use my eye to read or bake, or talk with a few people at once, causing me to move the eye a lot, it would be an 8, sometimes a 9 (I call nothing but the trigeminal neuralgia lightning strikes a 10.)

Hopefully our docs understand that saying it is only a 3 right now, uncomfortable, twinging, hurts a little more then someone else's (one of the most odd scales to my mind) that this is how it feels for this snapshot in time - but the overall picture and words cover a much larger range.

I am not sure how you would draw a scale for us: maybe there needs to be two - one for acute pain and one for those in chronic intractable pain. And even then maybe there needs to be two, for the pain right at this moment and for the pain overall.


I do not know why in the last post 2 phrases were highlighted for clicking. I tried it and it took me to an ad.
I do not use this blog to make money or take you to ads so please, if this happens, in other posts too, do not bother clicking on it. I am awaiting an answer as to how to stop it from doing this.
Thanks, Carol

Thursday, May 10, 2012


Someone from my sister's high school class contacted me a few weeks ago. Although there was a 10 year difference in our ages my sister often took me along when they visited. I liked her. She liked me.

"How are you"? she asked "And how are your sister and brother?" Unhappily I had to write bac, "I have been disabled for over 30 years. My sister and brother and I have been estranged for many years."

She did respond.

I wondered if she contacted my siblings. And more so I wondered would they tell her the lies they had been telling about me for many years: lies that had effectively turned a lot of people against me who used to like me.

It started me thinking about other people, other times, other realities. Some of the lies did not have to do with my pain and disability but it was those that I thought about.

I thought about my father. He had decided many years before that I was lazy, a malingerer, a fraud, despite doctors showing him diagrams of what was wrong inside my brain.

He was dying of ALS. With not a lot of time left I thought maybe now I could get him to talk with me about who I was and what had happened.

I sat down with him, my lap filled with medical records and articles about what I had.

"I need to get this settled with you. It is important to me that you accept the truth of what my life has become, and why." I picked up page after page: "This is the diagram of what they found in the first operation. This is what they found on the second. Here is the operative report from operation 5 and 6. Here is the chart notes from 3 and 4 since they did not do an open surgery."

He looked at them as you would look at a boring article in the paper.

I reminded him of what Dr. Schatz, the neuroophthalmologist, had said to him, "What Carol has is from a birth defect." and the texts and diagrams he had shown him.

"This is real." I said. "I never made any of this up. My disability and pain are real." Defending the pain and disability was always hard for me: how can you defend something that has killed your soul, and ruined your life and dreams? Sometimes there is no choice.

I finished my presentation, for that is what it was. He looked at me, then down at the sheaf of papers.

"There's nothing wrong with you." He looked away, the conversation over, the truth of my life ignored and denied.

I thought of that, and of my sister arguing with me about keeping candles unlit at a lunch table because the flame hurt my eyes, of a nephew saying "Do you wear penny loafers to show people how poor you are?" Of the women, when my trigeminal pain was at its worse, the slightest breeze triggering horrendous pain, yelling at me "How dare you take a handicapped spot? There's nothing wrong with you." Of other voices, other places, other nastiness, denials and refusals of acceptance.

There comes a point when you have to let it go.

I heard a great line the other day on an NPR show. "Expectation is the father of disappointment and resentment."

It's true. I expected that, one day, the miracle would happen; I would be believed without having to show the medical and textbook proof. I would be believed because I said "I am in pain. I cannot..."

Those expectations, that hope, has had only one outsome - disappointment, resentment, hurt, anger, you name the negative and that emotion can most likely be included.

The time has come. Forget accepting the limitations of others in being able to empathize, to hear, to understand. The onus is on me. I have to let it go. And when I do the pressure of the unmet expectation will dissolve, and the overwhelming weight disappear.

Wednesday, May 2, 2012


Somebody said that it couldn’t be done,
But, he with a chuckle replied
That "maybe it couldn’t," but he would be one
Who wouldn’t say so till he’d tried.
So he buckled right in with the trace of a grin
On his face. If he worried he hid it.
He started to sing as he tackled the thing
That couldn’t be done, and he did it.

Somebody scoffed: "Oh, you’ll never do that;
At least no one has done it";
But he took off his coat and he took off his hat,
And the first thing we knew he’d begun it.
With a lift of his chin and a bit of a grin,
Without any doubting or quiddit,
He started to sing as he tackled the thing
That couldn’t be done, and he did it.

There are thousands to tell you it cannot be done,
There are thousands to prophesy failure;
There are thousands to point out to you one by one,
The dangers that wait to assail you.
But just buckle it in with a bit of a grin,
Just take off your coat and go to it;
Just start to sing as you tackle the thing
That "couldn’t be done," and you’ll do it.

(Edgar Albert Guest

Dr. Martinez injured the sensory portion of my facial nerve in 1979, when he was going after the trigeminal only. The sign was loss of taste and sensation in the left side of my mouth and tongue. Three months later Dr. Jannetta, in going after the trigeminal nerve, paralyzed the left side of my face 100%. No one, not Dr. Jannetta, the facial nerve specialist, or the ophthalmologist who was dealing with the ophthalmic side effects, suggested physical therapy.

At that time, because of the extent of the pain, I do not know if I could have exercised my face; but I was never given the opportunity to decide if I could or to try.

I have had face lifts on the right side to make my face look more age symmetrical, the left side not aging while the right side is wrinkling nicely. There has also been a browlift and even a cutting of part of the left side of my smile so it looks more like a smile (that helped little). I had the area of atrophy by my left eye filled with fat. That lasted for about 2 years and then the atrophy reappeared. Although this was all reconstructive, to fix what Dr. Jannetta had done, insurance called it cosmetic. The money ran out so there was nothing more I could do. Everyone said so.

Forward 20 years later (since the paralysis).

I was looking in the mirror. I had never adjusted to the way I looked, the way the paralysis looked. Strangers still stared, children often looking at me, winking back, mimicing what they thought I was doing: the eye closing, seemingly trying to meet my mouth as it forced itself upward. People asked me "Did you have a stroke?" I was sick and tired of it. My face looked back at me. A thought hit, taking me by surprise. What if I tried to exercise it? Maybe I could fix the smile.

Everyday I forced the left side of my mouth to move upward. I used my hand to move it passively. Actively I struggled, my whole body tightening, forcing some mouth movement. It was not very effective - at first, or at second, or at third, but, little by very little I noticed movement. I was beginning to have a smile on that side. I had not seen my pain doc. for six months. The first thing he said as he walked into the exam room was "Your mouth is moving more." He could not have said anything better.

The forehead on the left side does not move at all. I am working as hard on that. Very slightly the eye brow is starting to move, almost imperceptible but definitely moving. Part of the proof is that the area of the very visible atrophy next to my eye, is starting to fill out.

They said nothing or that it could not be done. But I am doing it.

Sometimes we have to go past what the doctors tell us, when they cannot or do not think out of the box, we have to find the creativity within ourselves. And it may be that it can be done, and we are doing it.