My book.

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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Monday, February 25, 2013

THE CAUTIONARY TALE. It doesn't work for us.

A member of the church came forward this past Sunday to speak about coronary artery disease and his experience with it.  He told his story to remind people about the necessity of not ignoring signs and symptoms.  His experience was a bad one (he came out of it doing well by all accounts, thankfully) and his point very well  taken.

I was envious as I listened to him.  Not of what he went through.  Never.  But of his coming forward.

I visualized myself, or someone else, with chronic pain doing the same thing.  That did not work.

It is not a universal experience, in  terms of having a cardiac problem or history.  Almost everyone  knows someone who does or did, or knows someone who knows someone.

I could not come forward and say, this was my experience and please heed it as a cautionary tale.

Saying "It is estimated that 116 million people live with chronic pain." is more or less meaningless.   The concept of 'chronic" pain is foreign to most people.  Acute pain everyone knows, and 'gets'.   Weeks, then months, then years of pain.  That does not make much sense.  Pain is solvable.  Your sprained ankle goes away, the broken arm mends, the appendix is removed.  If it is a disease, the disease is treated, even if it is a chronic one.  You may have to deal with the disease, take insulin, or undergo longterm treatments, but that is different then "just" having pain.

I sit through choir rehearsal or the church service.  This is very painful for me: the use of my eyes to read, the bright light of the room or the sun shining in the sanctuary, looking up and down as we walk down the aisle singing.  There is no one to whom I can turn and say "I am in so much pain."

Even if there was what can they do?  Maybe a pat on the hand or an "I know.  I'm sorry." or "I wish I could help."  That would be nice.  Honestly it would feel good to have an empathetic "I get it."  How frustrating that might be though.  To say the words but being impotent to do anything.

I am a 'doer'.  It may be my projection, the inability to actively help being so passive as to make words feel worthless.  Of course, they are not.  I would love to have those words said to me.  When they have been I feel an overwhelming sense of relief:  "I am heard."   Another day when I mention the pain, I get an opposite response and learn, anew, that an understanding of it does not mean 'I want to know about it."

If I say "I had heart disease.  This is how it happened, this is what happened to me, and this is what you need to be on the watch for." people listen.  After all, it could happen to them.  If I say "I have chronic pain.   This is why and how it happened." I cannot follow up with "and this is what you need to look for in yourself."  And it is that last part that makes all the difference.

What do you think?

Tuesday, February 19, 2013


I have not written about my personal journey.

One of the sites I frequent has some discussions ongoing about pain, pain treatment. 

A few of the professional folks there espouse, strongly and without room for doubt, that chronic pain is the result of unresolved childhood conflicts or a body response to the need for better nutrition, hydration, and other homeopathic remedies. 

They believe this regardless of the cause of the pain, unwilling to accept the reality that our bodies do have problems that require surgery, medication, other treatments, and may be unresolvable but hopefully still have the ability to be helped.

I am a big believer in an anecdote does not a population make.  That being said this is what has been tried to help me with my pain*:

Non Jannetta Procedure MVD (a specific form of decompression using a pad placed between the trigeminal nerve and an artery or vein that may be pressing against the nerve)  decompression left posterior fossa 1977 successful 99% for 3 mths.
Dozens of tiny vessels found throughout the area, from a partial birth defect called Sturge- Weber - Wyburn Mason

(Blood vessels grew back and 3 months later pain returned)

marcaine rhizolysis 1978 - no benefit (Killing the nerve, temporarily, with a novocaine type drug)

thermocoagulation rhizolysis, no benefit, addition pain V3, loss sensation V1, V2, V3, injury 44% to N.7 and damage N. 9 (99 +% resolved)  (Killing the nerve with heat)

Jannetta Procedure (MVD) – no benefit, 100% paralysis (L) face Dr. Peter Jannetta

non MVD decompression posterior fossa (area of the brain) slight benefit

trigeminal tractotomy – approximately 5 year cessation spontaneous pains, side -effect- slight infrequent slight balance problems have persisted (Killing the nerve at the root)

Dorsal column stimulator implant – 85% benefit, (implant in the neck)

removal dorsal column stimulator implant 1986 infection (unrelated to implant)

Dorsal column stimulator implant – no benefit,

removal dorsal column stimulator implant 1987 infection (unrelated to implant)

(A,P clamps C2 – C5 (12 screws) 1998 Kyphosis (my neck "fell down") (2nd to laminectomy prep for trigeminal tractotomy 1980 - going through the spinal column to get to the brain))

sensory cortical stimulator implant 20 – 30% benefit 1991 (Implant attached to the covering of the brain)

(Failed in 2012, not sure why, currently remains implanted, have turned back on, waiting for benefit they have history of taking up to a few months before see a benefit.)

I have also been tried on many drugs including, but not limited to: tegretol, gabapentin, prolixin, elavil, prolixin and elavil in tandem, percodan, demerol, morphine, tincture of Opium, hydrocodeine, cymbalta, lyrica, haldol, reserpine, depakote, depakene, dilantin, vasodilators, baclofen, and many others. (been so many years since inception no longer recall many of the names)

It never hurts to eat better, to drink more liquids, to try alternative therapies.  I have no problem with those who say "Have you tried (acupuncture (which I did to no avail), hypnosis (which I did to no avail), chiropractic, relaxation techniques, homeopathy meds, etc.?"  I do have a problem with those who say this is all that is needed to treat chronic pain.

It is not.  There are way too many of us to prove that thesis.

What do you think?


* (It would take way too much space to define all the terms so I will not but if you have questions I am happy to try and answer them. These are all brain surgeries.)
Trigeminal neuralgia has 3 areas, the forehead and eye and slightly under, That is V1. V2 is under the eye to midway tdown cheeck and V# middle of cheek to jaw. It is one sided although some can have it on both sides. Mine is on the left side V1 only.

Friday, February 8, 2013

I have done all I can do, and this is the best I can do."

I saw this title on a site I go to now and again.   The site was about business, the question put to the group: "How do you handle this?"

Immediately my thoughts turned  not to business but to various consulting rooms, various doctors.

"How do you handle the words, "I have done all I can do, and this is the best I can do.""

I have had a number of doctors say this to me.

The reaction is a combination of anger, despair, frustration, more.

What am I supposed to do now?  Is he saying this because he is too frustrated with not being able to help me?  Is he just being lazy, uncreative?  If he gives up on me where else can I turn?

I am not a Pollyanna.  I tend towards the pessimistic rather then optimistic. 

But I have to tell you this story:

The neurosurgeon who put in my implant also took it out when I developed an (unrelated to the implant) infection.  The implant had taken away approximately 85% of my pain.  Losing it was a monunmental loss.

He agreed to do a second about six months later.  That one did not work at all.  It turned out not to matter, because I also lost that one to an infection.  (Also unrelated to the implant.) 

I waited a few months and then asked the main, the only question.  "When will you put it in again?"  It was hard to let go of the memory of the fantastic, and somewhat unexpected, benefit of the first one.   The lack of help from the second did not diminish my enthusiasm, the sure knowledge I would be helped again as soon as the next one was placed. 

"I can't put in another one."  "What!"  That was never a thought in my mind.  Saying "No." had never occurred to me.

"You have been operated on too many times in the same area.  There is too much scar tissue.  It's  impossible."

No.  No!  What was I going to do now?

Before the implant I had no hope.  I agreed to it in the first place because there was nothing left for them to do.  I had honestly never expected it to work and then, when it did, I never ever wanted to have it removed.  (In fact I argued about it, insisted, "You can't take this out, I don't agree to it!" even when the infection made it a medical necessity (and I essentially became choiceless.)

"I have done all I can and there is nothing left I can do."  I was without the implant.  I knew what he said was probably true, between the 2 implants, two removals of the implant and a surgery in the same place years before when they tried to cut the root of the trigeminal nerve, how could there not be a massive amount of tissue in the way?  Nevertheless the implant was all the hope I had left.  It had been tried as a last resort: all other surgeries (available at the time) had been tried, all the therapies, all of the meds they could think of.

Ti say I was bereft would be a gigantic understatement.  Nothing keft. How am I going to deal with this.  Doctors had told me, years before, that 'rational suicide' was acceptable in my case.  I had gotten past that point.  Was that all I had left?

Dr. Barolat cared about me and had worked as hard as he could to help.  He had done all he could do, it was truly the best he could do.  There was nothing left to try.   That's it.

No.  It was not.

Dr. Barolat came to me one day and said "I have an idea."  It would be another implant but placed on the covering of my brain.  It would be 100% experimental.  I would be the 13th person in the world to have it.  I did not have to think long and hard about it.  Experimental or not, there was nothing left for me.

The implant worked.  Not to the same degree.  In fact I was not sure it was helping until I had to turn it off a few months ago.  But it helped enough to make a good difference.  (And I have turned it back on and am waiting for it to kick in again.)

Just because they tell you "I have done all that I can do, there is nothing else." it may still be too soon to give up, to accept the "No.".

What have your experiences been?  Have you been told "No." only to find out there are still "yesses" to be had?

Friday, February 1, 2013


This is one part of the service that has always bothered me.  "Now is the time for silent prayer."  As soon as you start to think the words the minister says "And now for the hymn".  Or similar instructions.

It makes sense.  There is not time enough to give more then 10, 20 seconds to the silent prayer.  The service must get back on track or it could take a very long time to complete.  .

You sing the hymn or say the written prayer but there is not time to read and really think about the words.

Why did I think about this in relation to us?

What happens we go to the doctor?

Most doctor appointments last for at most 10 - 12 minutes before the physician needs to go on to the next patient.

A minute or two is taken up with pleasantries.  "Hi. How are you?  Fine. Thank you.  And you?"

"What's going on?" The doctor asks.

"I have a pain here. "  "My pain has changed."  "I  have a new symptom."  "I just don;t feel right."

Thats another minute or two gone.

"Please explain what you mean by that."

By the time you have answered and he/she digests what you have said you are right up against the 10 - 12 minutes.

Then comes the pronouncement.

"I think you have (          ) and this is what needs to be done to treat it."

He/she names medications, therapies, even surgery or a referral to a different doctor.

There is no time to digest it, to hear the words, to really understand what and why he is saying what he is.

If you have a good doc, and he is not on a strict deadline, you may be able to keep him there longer to answer your questions.

More often then not, the time is not there.

Because of the time constraint we are often pushed to make, or feel we are being pushed to make a decision at that moment; to accept a prescription without getting a full rundown of the possible risks vs. benefit.  To not have the time or presence of thought due to the rush to say "I have tried that before, it did not work, or made me fell (          ) or I have heard bad  things about it, is there something else instead?

"Why do I need to see someone else?  Who is this person?"  Surgery, physical therapy, a procedure.  Is the time there to explore all of the minutiaea?

Usually the answer is No.

It is easy to want to rush into making a decision, to agree to something, anything. because of our need.

 Just like in church the information is there, the offer is there, the time is absent.

But as with prayer, we need to remember that the time is available outside of church, outside of the doctor's office.  No matter how rushed we feel, we need to step back and make the time for ourselves.