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.

ONE MORE GIVE - NOT.

I wrote the other day about giving time.

I was waiting, pretty sure that all I needed was time; for the new changes in the implant to kick in.

I was getting frustrated, as always, thinking, in a tiny corner of my mind, Maybe I can turn it up just a little? What could that hurt? It is the up and down side of your doctor trusting you. I have access to the main computer to do these things, which is great. I do not have to trundle back and forth to the doc each time I think I need to have it changed/they want to make a change. The other side is it is all up to me.

2 days ago, it went haywire again.

I rarely feel the tingling, because the left side of my face is numb. Suddenly, again, the whole left side of my face was tingling, pretty strong - no, very strong. Not as strong as the few months ago back when I was in trouble but again in a way that frightened me.

When Dr. Barolat put it in he was concerned about the chances of seizures, since he had not done this before, and there was no literature or research. I have been on an anticonvulsant for years, for the 'tics' I get from my phantom pain. I never had a seizure. I figure the time is long past for one but who knows? The feeling was so strange, and it was giving me some weird, implant type tingling in the right side of my face too, where no tingling should be. Just plain scary.

I decided first to get the magnet so I could turn off the battery if I had to (hoping I would have the capacity to do something if something happened). Then I turned down the level of stimulation figuring softening it would fix it.

It did not. I had no choice. I was afraid. The tingling continued. The weird feelings continued.

I waited for it to stop. That was strange too. It stopped in stages, starting in my forehead then inching down to my chin until finally, after an hour and a half, by the clock, it all stopped, even the sensations on the right side.

I was back to where I was. Afraid to turn it back on and the dreaded "What do I do now!"

I talked to my company representative who added more bad information. Maybe, she is not sure, they could test the wire. This might tell us if the problem is in the main wire or an extension wire. The problem is, even if it is doable, they no longer make the extension wire. It would take a year, or more, she said, for them to be able to make one for me.

I am willing to wait a year but then another question occurred to me. Could these surges be from the sensory cortex itself? I am waiting to hear back from my neurosurg who will hopefully be able to answer that question. But, as my rep said, how would anyone really know since you're the only one (we know) with a sensory contex implant.

I wrote about clinical trials but never about agreeing to be a guinea pig.

I was happy to have this implant. There were no options left at that point. Dr. Barolat was an angel to think of something unusual, willing to go out on a limb, giving me another chance.

I have had it for 20 years. That is the longest the company believes anyone has had a working implant. (That could also be an issue but then how would they know?)

I know the first implant, in the dorsal spinal column, definitely worked. I vacillate about this one but it does seem as though my eye usage time is less, and the pain more, when it is off.

I hate that there is no way to know a lot of the answers because there are, or were, only 12 other people with this (and most of them had a different form of pain). That said, and not knowing what this outcome will be, I can say, without hesitation, I do not regret agreeing to be an experiment.

What will happen now?

Only time will tell.

ONE MORE 'GIVE'.

I wrote a while back about giving: giving in, giving up and giving yourself permission. While changing the parameters of my stimulation I realized I left one out: giving yourself time.

It is so easy when trying a new pill, new treatment, even new levels and kind of stimulation, to give up quickly.

"It isn't working." after a day or two, sometimes even a week or two.

"It didn't work." after surgery, procedure or treament even though it has only been a day, a few days, a week or only a month.

"It doesn't work." Period.

That was the mantra to my doc after my first implant in 1986. It was doing absolutely nothing. I had to keep a magnet with me at all times. Touching it against the battery would turn it off in case of trouble. I hated feeling the battery under my skin. I hated touching the cold hard metal by mistake. I hated becoming attached to any metal I passed, machines, cashier's tables, etc.

I just hated the whole thing. Anyway, it was not helping - so what was the point?

My neurosurgeon and I agreed it would be removed. I was waiting until I felt like having more surgery. It was just a matter of time.

Three months passed. Maybe it's time to call and schedule it. Just get rid of this thing.", I thought as I turned on the water and got into my morning shower. I moved into position, my left face away from the spray so the the water could not touch the pained area of either the face or scalp and trigger the pain.

Somehow a few droplets of water hit it anyway. It did not hurt! Wait a minute. Could this really be? Incredulous, I stood still, trying to figure it out. Okay. I can do this I thought as I slowly turned my face towards the water. I was petrified yet hope was pounding against my chest and ringing loud in my ears and mind. I was a phobic deciding to do the thing I feared the most in the world. The water hit. Oh my G-d! No pain! NO PAIN! Three months. No benefit. And out of the blue - there it was. It was working.

I could have given in sooner and had it taken out. I had given no thought to 'tincture of time'. It was happenstance that I had this chance to have it work.

The changes I have made with this implant have not really kicked in - yet. I think there may be some benefit but I cannot decide because one day of eye usage can not be directly compared to the next. But this time I know I have to give it time.

It is very frustrating, waiting, hanging on, hoping. Part of me says the heck with it, it is not going to work. The hope and yearning part says, no, it is too soon. You must wait it out.

Tincture of time. It is a hated prescriptiion but maybe, just maybe, one that many of us need, no matter how hard, to try.

CLINICAL TRIALS, INFO AND WHAT DO YOU THINK?

I was surprised by some of what I learned yesterday about these trials.

For instance: when I think of a clinical trial I immediately think, oh no I might get a placebo. I don't want to be playing around. As a chronic pain patient I also find I think of those docs who have not been able to give us a diagnosis so just say "It's in your head." What if I am on the placebo but I feel there is a benefit? Then is it psychological? (even though the diagnosis has been verified and reverified by tests, definitive signs and symptoms, and for me, surgery. Too many docs have made me paranoid. (Even a family that thinks 5 neurosurgeons operated on my brain just for the heck of it.) And what if I am on a med that is helping? I surely will not stop taking that drug.

Joan assured me that many tests are what is called 'add-on". It is easier for me to use her example.

If you have asthma, you would stay on your drug and get an 'add-on' a drug that is being tested to see if it will assist the drug you are taking, for instance, using an inhaler every 3 days instead of everyday when you are on the 'add-on' test medication. The other person gets the placebo so, regardless, is still benefitting from their normal regimen.

Other studies may have one group on a standard regimen while the study group takes the experimental drug.

This is a click for a full explanation of each phase of testing: http://www.centerwatch.com/clinical-trials/overview.aspx

And a click for Volunteering for clinical trial, what to expect, what to ask, how to get into one, etc.: http://www.centerwatch.com/clinical-trials/volunteering.aspx

For us for instance Astrazenica is currently testing a drug to see if it helps with the side effect of constipation from taking narcotics.

http://www.astrazenecaclinicaltrials.com/diseases-and-conditions/diseaseandconditions/?fieldValues%5Ball%5D=&fieldValues%5Breportavailable%5D=&fieldValues%5Brecruitingstatus%5D=&fieldValues%5Bdiseases%5D=AZN104170&fieldValues%5Bproducts%5D=&fieldValues%5Bphase%5D=

And here is click for list of clinical trials: http://www.centerwatch.com/clinical-trials/listings/

What do you think? Would you do a clinical trial? Why, why not? Would you want to be paid? What other information would be important to you?

I truly hope you will be open to answering these questions. It gives the testers more information on how they can help us and we them.

YESTERDAY WAS THE BEST DAY IN A LONG TIME.

I was asked to be on a panel at a conference about drug clinical trials. The focus was on ways to get more folks enrolled in, offering to, and doing them in a way that is more patient friendly.

I listened to one or two presentations.

The first was scary. The presenter was talking about a trial for those with bladder cancer, a very difficult cancer, in terms of what it is and how it easily reappears. Over the period of a year they would have 9 blood tests, 8 telephone calls from the tester, and 16 catheterizations. Not a trial in which many would want to subscribe.

The discussion was about how to turn that around and present it in a positive manner. The second presentation was more about how trials are done including the phases. That was interesting. It gave me a better understandiing of the recruitment process.

Then we had our panel. I was there with 2 other women. June had Parkinson's and, like Susan (both pseudonyms), who had diabetes, had participated in clinical trials. I have not.

We talked about joining a trial: why, or why not, did we expect to be paid or be given some form of reimbursement, how did we want privacy and data handled, and more. It was fun.

Then it ended.

I was walking away when Joan (pseudonym) asked me a question. She and I stood and talked for about an hour. About the conference and issues I, and the panel members spoke about, then about patient trials, and then about our experiences with some blogs and online things. Just plain old me and someone else, acting like regular people.

The discussion was not about things that were out of my life sphere or sphere of reference.

The other day at church a couple of people were talking about an ill spouse. The talk changed to another disorder. Both were problems everyone in the group could relate to, but me. Trying to throw my hat in the ring was possible only if I said something about "Well, when you have chronic pain..." Nope, no ability for them to relate to that. I watched for a minute or two, a puppy with her face pressed against the window, then left. I had nothing more global I could add.

With Joan, our talking was about many things we both had experience with and knew about. It has been a very long time since that has happened.
(I talk on the phone with my friend Dottie, almost daily, which is great and our conversations are long and varied. But it is different when you are face to face with someone, especially a new person.)

I did not have to read, and I talked to one person at a time. It made it a somewhat painfree day.

Could I do it again? Definitely. Not immediately because, well, there was the pain.

But it was the best day, partly because it was a day, a full day, not ever for sure. But in a very long time.

As I write about it now I am still smiling.