THREAT vs CHALLENGE

After choir rehearsal on Thursday night I decided I could not do the concert for the coming Sunday. If the pain was as bad as it was after the rehearsal how could I do the concert?

I fretted over the decision the rest of that night and all day Friday.

"It is not as though I like the song that much, I mean I like the spirituals, and there are some parts of the major piece I like but still, it's not like I'll be missing out on something I would regret not singing. I still hate that I didn't do the Messiah but this would be okay."

By late Friday evening I changed my mind. I do like the longer piece. I'll go to rehearsal Saturday morning and see if that is as bad.

Saturday's rehearsal was not as bad. Thursday night we went back and forth in the music, from this page to that, to work on problematic parts of the music. Each 'this and that" required a turn of the page, look at the page numbers, find the measure on that page, find the words, look at the musical instructions...oh and sing too.

Singing means using my mouth, of course. If the cheek swelling that is often there is bad the mere act of talking, much less singing becomes a problem. Thursday's rehearsal was a night when all the stars were misaligned; making the pain worse each time I turned the page, opened my mouth, etc.

Saturday morning there were less page turns. The tightness of that side of my face was not as bad and I became more enamored of the music. I was also not aware of how much 'down' time we would have as the ensemble sang a few songs and the choir director played two organ pieces. I decided I could do the concert.

It was good. I enjoyed it, I found I knew most of the music and rarely needed to look at it. The non-singing time allowed me to recover somewhat from the pain. I was very, very glad I decided to try it.

It was my hope that I could do it. It was the threat of the pain that almost made me stay home. And it was a choice - do I rely on the threat, a known commodity, the pain will be set off, or do I see it as a challenge - can I do it, do I make the try?

It was a decision that was undoable, at least to some degree, more undoable of course, if I made the decision not to go after the Saturday rehearsal.

But it was that rehearsal that I almost blew off, thinking: I know how the pain reacts, how my eye behaves, what level of pain I will have; but, I did not have all the information I needed to make the choice. Becoming aware of the time we would be sitting out made a big difference.

I was glad I took the threat and turned it into a challenge. It is not always doable, some things deserve the fear, require the decision of "No, I can't". But sometimes it is worth taking a second and third look to see if what we fear is really a challenge waiting to be tackled.

DELUSIONS OF......HOPE(?)

There was a Messiah singalong the other night at the church. Our choir was scattered througout so I did not feel compelled to go but, since the failure of the implant, this is happening more and more: I want to go but I do not want to go because of the pain.

All that afternoon I argued with myself. It will be fun but how much eye work will it take? How much codeine? The 3 minute walk to the church starts the problem. The cold makes the lids swell, the swelling makes the pain worse, the pain makes me need the codeine so I start out already behind.

In the old days, when I had the touch triggered pain, it would not even be a consideration. There would be no way I could do it. Even though it is now only the eye pain, not, Thank G-d, the horrendous excruciation of the original tic the pain still becomes the decider of what I will do.

I want to be a part of this. I want to sing. I want to be one of the many, of a community that contains me as a member. It is the pain that does not want to be there.

So I ask myself, Do I want to be there more then I do not?

I wish it was as simple as that. Everything socially, all that would let me be a part of something well worth sharing, cannot overcome the fear of the pain, the fear that I will not be able to control how much I use the eye. I also want to be part of the socializing after, which is also bad for the eye, but I will force myself while making the pain close to unendurable, as close as you can get while still pretending. So ther decision is unhappily made. I stay home.

The choir is doing a concert this Sunday.

Again I have to decide. Can I do it? After, and during the rehearsal last night, I fought the weight on each shoulder, both devil and angel. One says "Forget how dry your mouth is from the drug, forget the pain, you have to do it. Do you really want to let the pain separate you, once again, from the group?" The other replies "Forget doing the concert. Let go of the need to be one of the many. You saw it in rehearsal. The joy of singing turned into desperation and longing for the song to end, the pain escalating, refusing to leave." Each side is right. Each side hurts me in its truth.

Once again the pain puts me to the side of life, keeps me from being a participant. We have another rehearsal tomorrow morning. I am putting off the decision hoping that my mouth stays wet, the codeine is not necessary, and the pain decides not to make itself known.

It amazes me that, after 30 years of this, I still have the capacity for self delusion. And yet, maybe this time, my fantasy will magically become real.

Hope truly does spring eternal.

PERSISTANCE, INSISTENCE

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For many things I can be like a dog with a bone, fighting to hold on to what is mine or to get what I need. Other times I capitulate, forgetting to fight or not having the energy to do so.

A few months after I had the first implant the battery that powered it died. Somehow I had also caused a wire, that went from the battery to the computer chip, to move. To make things easier I had both repaired at the same time. The battery area looked fine but the back of my neck, where the wire surgery had been, was very red and swollen.

I was at my mother's house recuperating. It looked so bad that she insisted I call the doctor. I reached the resident.

"The back of my neck is very red and swollen. I think it may be infected."
"I am sure it is just the normal red from surgery."
"No, I don't think so. It is bright red and looks very swollen."
"Again, that is the way any area that has just been operated on looks. Don't worry about it."

I knew it did not look right. I pushed back 2 or 3 times, "No, it does not look right." "It's fine." Tired of making the effort to be heard, I gave in. "Okay. Thanks."

It turned out I was right. It was infected. By the time I saw my doctor it was so infected I was immediately admitted to the hospital. I was in for a month and ended up having the implant removed. When I first talked with the resident I knew I was right. That implant had helped about 85%, allowing me to touch my face and not have constant pain. The next one did not help. I lost the first one, at least partially, because I did not persist in my insistence that the resident listen to me.

The pain started 6 months after I moved to NYC. I was unaware that I had private insurance so I went to a clinic.

I saw the doctor, a resident in training. "The pain in my face is terrible. It is constant and sproadic. I cannot tolerate any touch without horrendous pain. Please help me. Please give me something."
"It cannot be that bad. I am not giving you medication. Try aspirin."
"Please."
"No."
"Please."
"No."
Week after week. Month after month. "Please." "No." "Please." "No."

One day I was talking to him on the phone. "Please." "No." "Please." I started crying. "Please, you have to help me. Please." "Allright. Allright. I will write for some codeine."

Getting through to him required sobbing, begging, and being brought to my knees. The pain controlled everything, including my logic and thought. In any other situation, and without the pain, I would have insisted, very early on, that I be seen by an attending doctor. I would have shouted to the rafters until someone listened: "I am in pain! Help me."

Many other times, many other capitulations.

When I am asked to list some of the things that help us deal with our pain, things we should do, how we should act, I suggest keeping a diary or journal, listening to our bodies, stopping when we need to, giving ourselves permission and so on. The thing I do not think to add is also important. Persistance, insistence, refusing to go away until we get what we need.

It is hard but the more we do it the easier it becomes.

Persisting, insisting. Muscles we often forget we have.

IT'S UP TO ME.

I need to write a post for today. Nothing I think of feels right; maybe because I feel I need to be honest about what is going on - and I am not sure I am ready for that.

It looked like the implant was doing better. I changed one of the parameters in a way I had never thought to do in the 20 years I had it. The stimulation was in the eyelids. Maybe, just maybe this was "It".

Experience should have told me it was too good to be true, and not to get too excited too fast. Within a short time I had the same incident of severe stimulation throughout the face that had started the troubles I was having. I reduced the level of stimulation. The problem remained. I turned it off. I still had incidents: the same tingling, the same area.

What is happening? Could the implant still be sending out power even though it is turned off? I turned the amplitude to 0. To be sure, I turned the battery off using the magnet. The problem tingling continued to occur. I turned everything down to the lowest possible level: rate, pulse, amplitude. Still the incidences of tingling.

The only thing left to turn off was the time signature. I changed it from 6 minutes on every half hour to 24 hours off and 1 minute on. (It refused to allow 0 time on). The incidents of tingling have lessened. Although they are still hasppening they are becoming less and less intense and lasting for shorter periods of time. So far they have not stopped completely but that seems very likely.

I emailed my surgeon a descriptiion of what was happening and the question - does it sound more like the implant or could my sensory cortex, where the computer chip is located, be remembering and sending out the stimulation sensations?

The answer was the infamous 'Idon'tknow.' with options. He suggested a CT scan with dye in case there is a problem in the cortex, I could turn the implant off and leave it off, I could consider another electrode. The decisions were all up to me.

He added this caveat: there are NO answers. I could ask many, many people in the world but the chances were negligible that anyone would have one.

So what to do?

I am allergic to CAT scan dye. I do not not want to take steroids to have the test unless really necessary. That would not solve the problem anyway. It might show if there is a lesion in the cortex, for instance, but it would still leave unresolved if it is the implant itself that is at fault.

If there is no way to be assured that it is not a problem with the cortex holding onto the stimulation or not being able to tolerate more stimulation how could I consider merely replacing the implant, or having one put in the motor cortex just next to the sensory area? (I had been told a number of years ago that was not a good idea anyway). If I have it removed, period, that feels like the death knell of hope.

The interim option is to just remove the battery while leaving the implant itself intact. That does not feel like a good answer either. It leaves a number of questions unanswered.

This is one of those times when I want a doctor to be able to say to me "This is what you need to do. This is why and this is what you can expect."

The fact that this is not is one of those big time pain imponderables.

BELIEVABILITY.

As I wrote the last post, listing my surgical history, I started thinking about my family's attitude and behavior, as well as what other people have often said in various pain support groups.

How can someone not believe you when you have had 12 brain surgeries? How can a sister see you bald (they took all my hair for the first operation) disfigured, or have trouble walking and say, 'There is nothing wrong with you, you're making it up."?

How can someone look at someone they know/love and see the black and blue and swelling of, say, CRPS, (chronic regional pain syndrome) and say "You are perfectly fine. There is nothing wrong with you"?

I wish I knew. Don't you wish I was able to answer that? Me too. I cannot. It is bizarre to me.

On the one hand I do get it, at least at the beginning. Pain is invisible.

I say to you "I have pain that will not go away. I am housebound and cannot work. It has made me afraid, in the case of trigeminal neuralgia, of washing my face, going out in a light breeze, or the cold, or wind." You look at me and go "oooookay." And roll your eyes.

I remember a woman who was at the pain clinic at the same time I was, in 1980.

A statue fell on her foot. Within a short period of time she had bodywide severe pain, even trouble with incontinence. No doctor believed her. My impression at the time was that she was there so they could help her realize her pain and other issues were psychological. I listened to her and even though I was disbelieved at the start, and knew how that felt, I thought it was probably psychological. It just did not sound like something...real. If she had waited until about 1986 she would have had a better chance of being believed as the symptoms of CRPS (then called RSD) became acknowledged as a real pain syndrome and disorder.

On the other hand, Dr. House, on the TV show, said 'I act this way "between arrogant and unhinged" because I am in pain 24 hours a day, from severe to untenable.

Is this what is expected? Those of us in debilitating pain have to behave in a specific way in order to be believed. If we are not screaming in pain, how bad can it be? But if you are screaming in pain continuously chances are good you will be seen as a 'nut'. I daresay for many of us, behaving "arrogant to unhinged' would only further the disbelief.

My father said to me, more then once, "I see your read so I know you can read." negating any middle ground. No other disease I can think of offhand (and I am not including psychiatric disorders here) requires a middle ground, requires a leap of faith for those around us to accept our pain and disability.

What do we need to do? We need to accept the limitations of our loved ones, friends, colleagues, even acquaintances. Even when they refuse to accept ours.

I was asked about what have I tried. Here is some of it.

I received an email from someone who had read the blog and had a lot of questions about my surgical and treatment history.

I realized I have not shared that with you. For those who wondered here is a quick rundown:

I was diagnosed with trigeminal neuralgia in 1976.

In 1977 I had a decompression procedure, not an MVD which many people know as a major surgery suggested for TN. As a result of the birth defect that caused the tn there are dozens, maybe more, of tiny extra blood vessels throughout the left side of my brain (the affected side). The first surgeon decompressed/ removed as many of them as possible. As a result I was immediately 100% painfree.

Unfortunately the blood vessels grew back. 3 months later the pain returned with the same vengence as initally.

I then tried a rhizolysis (a procedure where a needle in placed into the trigeminal nerve, entering through the cheek). It was done using Marcaine, an anesthetic. There was no benefit or problems. This was 1998.

In January, 1979, I had a thermocoagulation rhizolysis, the same procedure only this time using heat in an effort to kill the nerve.

That also did not help but also caused a lot of problems including phantom pain and numbness throughout the entire left side of my face, loss of feeling in my left eye. There were also some problems swallowing. In addition I lost the sensation and taste in the left side of my mouth and tongue.

In March, 1979, Dr. Peter Jannetta did an MVD, also called a Jannetta Procedure. This did not help but left me with a 100% paralysis of the left side of my face.

1980 - another decompression, like the first. This was during the summer when the pain was somewhat better just because I could tolerate the weather better - no wind, little breeze or cold. As the weather worsened so too did the pain.

In 1981 was a trigeminal tractotomy. This is done through the back of the neck in an effort to cut the nerve close to the root.

In 1986 I had my first implant, a dorsal column stimulator. This worked about 85%, I could wash my face, walk in the wind, etc. The eye pain remained unchanged.

Sadly the next few surgeries were from problems with the implant.
I lost the first that helped so much, and then the second, which did not help at all, to infections. In both instances there were external reasons for the infections and not directly related to the surgery or the device.

In 1991 I had the current experimental implant placed on the covering of the brain stimulating the sensory cortex.

Given the problems I am having, that I wrote about in the last couple of posts, I am becoming more convinced that it may have to come out. If it does I do not know what the next step will be. Or if there is another option.

At any rate, this is my story.

So far.

CAN'T WALK/ HAVE PAIN. WHY IS ONE EASIER THEN THE OTHER?

I was sitting in the choir loft, the pain sneaking up on me, insidiously wending its way into the eyelids, making reading impossible, unless I want to increase the pain.

I doubt anyone notices, except for maybe the people sitting next to me, that I do not participate when there is a responsive reading. It doea not happen often - but when it does I start to feel suspect for not saying the words.

I learn the one line we sing, watching the choir director's face, waiting for his look down at the keyboard for my notice we have to sing. Even though it makes no difference to the pain, much of the rest of the service requires little of me, the hymn in the middle and the end a problem, but absent that I can work on not moving my eyes, on not exacerbating the pain.

It started me thinking, as everyone else spoke the words and I had time to reflect, about the difference of having the pain and something more obvious.

After one surgery I had to relearn to walk. I was not paralyzed but my legs went all akimbo like a newborn colt.

I was embarrassed that I could not walk, but there was no question about my doing anything that required using my legs. It was a done deal that I could not. My mortification was about my inability to control a part of my body.

The pain is different. I knew I would quickly get back my walking legs. Knowing there was an endpoint, even without knowing how long that would take, definitely made a difference. The cause of the impairment was something easy(ish) to explain. The visibility of what was wrong with me required no justification.

Pain only allows secretiveness for a short while. It is hard work, hiding the pain, hiding the inability, waiting for the endzone that may never appear.

I sit in my seat waiting for us, the choir, to rise and sing. I furtively take half a codeine a short while before, finding the first one I took on my way to church, a half an hour before, did not 'take'.

Sitting back down after the song, I soon notice my one foot becomes jumpy as the pain increases. My hand makes its way up inside my sleeve, squeezing an area of skin, trying to distract from the eye pain. It does not work. I become aware of all three. I feel 'outed' by them, but I am sure no one sees, or saw.

What do I do about it? What do we do about it?

Do we keep it quiet and fight to maintain a presence of normality? Or do we say it, "I am in pain." and hope we are heard for the kind of pain we are in.