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.

YOUR DOC. WHAT, AND WHO, SHOULD DETERMINE HIS PAY?

"The federal government's Centers for Medicare and Medicaid Services is finalizing a new reimbursement plan ...Under the proposed rule, adherence to quality care measures will be weighted at 70 percent of the payment formula. Patient satisfaction surveys will account for the remaining 30 percent. "

Is this fair?

If the ratings are based on willingness to communicate rather then just walk in, essentially ignoring you as she does 2, 3 other things (I had a doc who was on the phone the whole time he was supposedly listening to me and why I was there.) that is a good idea.

If it is based on knowing you and your history (if a first time visit, actually examining you, not just a cursory listen to your lungs and heart.) that is a good variable.

Does the doc have the ability to empathize? Does she actually "get" what you tell her, does she understand the level of pain you are in? Does she believe you? If she doesn't is she honest enough to say "I cannot help you." and offer to find a doctor who might?

Does she see you not as a patient but as potential criminal, malingerer, drug abuser? Is her attitude one of working with you or against you (your pain isn't real, it is not as bad as you say, etc.)?

Does she see you as money in her account? She has not been able to help you but continues to insist you come back, again and again, holding out the hope of 'the next visit' will be the one where she has the idea that will help you?

When I googled 'medicare payment tied to patient satisfaction' I came across an article written by a doctor. He wrote that he did not think it was a good idea because it will result in giving patients whast they want rather then what they need.

A site for student doctors agreed with that. Most cast patients as stupid, people who would give them a good rating only if they started "recommending Big Macs and Hot fudge Sundaes to everyone." ("http://forums.studentdoctor.net/showthread.php?t=819156)

One other big complaint: patients would want opiods and rate the doc bad if they did not get them. Chronic pain and chronic pain patients seemed to get the most ire from these docs and students.

I have stayed with docs who were awful and I have had docs that I wish had not retired or moved, docs I would literally lay down in the street for and say "Go ahead." to whatever they suggest.

Should those good docs get paid more? They had good communication skills, empathy, decency. I have also had awful docs who had these skills. And a few, very few, docs who would score very low on these qualities but high on the 'helped me' scale.

What are the qualities that make a doc good, that cause his patients to give him a good rating?

If he has these qualities and if I paid him out of my own pocket would I be willing to pay him more?

It is definitely a question worthy of discussion.