I want to thank all the people who attended the session with Dr. Casey. And special thanks to those
who donated time, materials and effort to make this a special day.
Cherie Sato, Support Group Leader.
By: Don Jeffries
Dr. Kenneth F. Casey co-author of the "Striking Back" book, who has treated hundreds of patients with TN and
other types of facial pain will summarize the treatment successes and research findings of leading facial pain
experts, including Dr. Peter J. Jannetta.
Dr. Casey has recently been appointed as Chief of Neurosurgery at Detroit Receiving Hospital.
With everything that has gone on in the last few years, we are now looking at the position of those people who
want to be care givers, those people who want to take care of you. Much like your organization here.
We took some statistics that in the coming decade 45+% of all primary care will be given by physicians
assistants and certified nurse practitioners. They will be needed to fill the doctor gap, brought on by our elected
officials in our national government.
Our mission is to reach this group and train them in head and neck pain in general. What are the categories of
head and neck pain and how to logically and rationally take care of them in the office. In addition we need a
physician group to transition from the care giver to the neurosurgeon. Historically neurosurgeons are under
represented in the USA.
Surgeons feel that it is ok to give pills to help with the pain, but at some time it is time to move on, it is time to
take care of the problem of the pain before there are no more pills to control it.
The key to patients with head and neck pain is to get a decent STORY! Generally physicians do a good job of
that, but it is primarily the patients responsibility to give the STORY! If in telling your story it misses some of the
essential elements, then immediately the doctor will head off in the wrong direction. They don’t see as many
people with head pain as you do.
Write it down. One page: when did it start (not at 11:00 a.m. today, but when IT STARTED! What it was like
when it first started. Your life with it, what it is it like now, some of the words you use to describe the pain. (
Check some of our past newsletters they have what the emergency room person needs.) Especially if you can’t
talk and the person with you cannot articulate your problem or the medications that you are on, if any. Who your
doctor is! You should have this same page with you if you go to a different doctor! Take it with you when you
are on a trip. Everything is important.
Drug taking is over used and over stated in the USA, It is still there. When you go someplace with pain all
doctors think you are after a drug to stop the pain. Accuracy in your report is paramount.
When we teach people how to diagnose head and neck pain. First we tell them to take the anatomy first, the
type of pain and the setting in which the pain occurs. Then brake it down into things that happen to them.
You may have noticed that I have talked about pain: eye, nerve, veins/vessels, skin, bone but I have not talked
about brain pain. Any one know why? Right, the brain cannot feel pain. We can operate on the brain with no
anesthesia. We can push on a part of your brain and you will say you are talking to your grandmother, or
another part and you are throwing a ball.
Migraine headaches the pain is usually in the nerves or the vessels that run through the brain.
When you get stuck with a pin in the finger, the nerve fires off in the finger and then goes to the hypothalamus
where two nerves fire off. However when the pain originates in the brain area, it is magnified. Stop and think of a
pin sticking your finger time after time for twenty minutes it wouldn’t take long for you to do something drastic
about it. The vessel will pound on the nerve in the brain for ten-twenty minutes plus, it is very difficult to do
anything about it. Again it magnifies.TN is generally concerned with the fifth (5th) nerve. An interesting
phenomena is that the longer you have the pain it will eventually creep to the back of the head. It will start out
lets say in the eye, or teeth, then gradually also creep back, to the top or back of the head, as well as stay
where it began. This is called convergence (rationalization of the nerves.)
When someone tells me they have lancinating like pain along one side of their cheek, we don’t automatically
think of TN, we want to hear all the other parts of the story to make sure someone is not telling us about a tumor
on their fifth nerve or somewhere else. And we will need to get the appropriate tests to get everything checked
out. This is when the MRI is done.
There are many factors that act like TN: TMJ, Tumors, bone problems etc.. When you build a diagnosis, it is like
building a house or bricks. You get a lot of little bricks, as you build them up you get what looks like a little house
then you are in good shape, but if you just have a pile of bricks, then you haven’t figured out your problem yet.
What about diagnosis: One of the things that is a problem is that different doctors have been exposed to many
different names for the very same thing. So If you hear different words, but if you are paying attention you will
know they are talking about the same thing.
On your one sheet, be sure to put down when it started and where it started, because it may have regionalized!
Two doctors decided to track 25 people who did not have typical TN, they found when the neurologist asked
them about the pain, most said the first time it was kind of a dull pain, right off the neurologist thought its not TN.
Now they think you have atypical pain, which is a mistake. Second they wanted to know if it was lightening like
pain or (paratysimal) sp? Pain comes in little clusters every few seconds, the seconds to the patients seem like
hours not seconds.
While the doctors followed the 25 patients, they all went on to classic TN in one to twelve years.
We now think that pre or atypical TN is really just another earlier form of TN. Pre TN is really Trigeminal
Neuralgia. This is just a form of terminology, and we are caught up in the
terminology.
Every person who has had chicken pox has the VIRUS in their fifth nerve. This is without exception. When the
virus clears from you skin, it goes to six depositories in your body, with the
fifth ganglia being one of the places it retreats to. The ganglia along the chest wall, the ganglia in the pelvis
area. Then we get to wait to see what will trigger it. Medication, stress, an accident etc.
When you have TN you have inherited two things, we used to think only one, the first thing you have inherited is
elastic vessels, not just in your head, but in your entire body. They have a tendency to be more curvy, if you
look on the back of your hand and you remember what they used to look like now they are more curvy. This is
usually inherited from either mom, dad or both. The second thing is, which is interesting; all nerves in the body
have the ability to heal themselves. When they are injured they have the ability to make a new covering. Like all
things in medicine (life) the nerves are on a bell curve, some are at the top end of the curve some at the bottom
with the vast majority being in the middle. All nerves have the ability to heal themselves unless they have gone
beyond the point of being able to heal itself, if it was too severely injured to rejuvenate itself. If a nerve is going
to heal any portion of itself, it takes 3-6 years. Each nerve knows if or how much it needs to repair itself. It also
knows if there is too much damage to be repaired. The slow healers are almost 100% slower in healing than the
faster healers.
Pain and the recognition of pain and the ability to avoid it is so fundamental to the survival of the organism it
would appear that there is four or five redundant systems that if you cut the main system another system kicks
in to take its place.
Remember the feeling for the foot /arm/leg etc is not in those appendages it is in the brain. If I am operating on
your brain and I touch a certain cell, you will tell me that is your foot I am touching. That is why when people who
lose an arm or a leg, they think they can still feel it because those cells for the arm or leg are still in the brain!
When we go into remission for awhile, it may be because the nerve is trying to remyelinate, and it may succeed
for a while. Then the vessel wears it down again and we are no longer in remission and it is usually more sever
pain than before.
When we have your head in a special frame, we can crank it 2 degrees and see the vessel lift off the nerve.
Crank it back and we can see the vessel lay back down on the nerve. So a substantial number of people with
facial pain will tell us, yes, I do have a positional position that will cause pain, I can’t sleep at night on that side
because it will cause pain. We think this is caused by the movement of the blood vessel.In Detroit where I
practice now we have a special MRI that we can put you into and actually watch what your pain systems do. If
you continually annoy the pain system you can watch it change at a certain point of annoyance, it will click off
and at which time a second group of transmitters take over and goes into a protective response.
Remember when we talked about losing an arm or a leg and what happens. When we cut the nerve the body
goes into a protective system when it can’t find what has happened it goes back to the nerve that has been cut
and gives an order that there is in pain. That is the reason so many times even though we cut the nerve after a
period of time the pain comes back. The total being of the body is to avoid damage to the system. If it doesn’t
have any current information it will flip back to the last time it had information and then do the job again. That
means the brain had to make a decision!As individual we don’t have any way to know how to tap into the
protective chemicals.
We are studying this and may someday be able to help the brain do a better job. We can see them clicking, but
we don’t know why and why it takes some subjects two, three, four times longer for the protective chemicals to
click in than other subjects. We need a lot more data before we can know the chemical mix that is needed. It
looks like there is some protective response by the brain even when the nerve has been cut!
Because of the differences in individuals, they can have the exact same injury but have very different levels of
pain. We do this or that and we can stimulate this or that in the area that controls the pain. Instead of giving you
a chemical to kill the pain we will use simulators that will let you use your own body’s chemicals to control the
pain, such as the motor cortex stimulator.Secondary TN or TN-5 comes from something that irritated the nerve.
Tumors make a lot sense for this, MS, HIV, etc..
At every national meeting we always have as few people who are about to be operated on for TN when
someone suggests checking the measure of the irritation which indicated an ongoing infection in the back
ground. The old system of typical and A-typical just doesn’t work any more there are too many people who had
been diagnosed with A-typical that ended up having TN. This is one of the reasons to have a very good history
of your problem documented (your one sheet).When they took 250 people with A-typical TN and did an MVD
they found the success rate for getting rid of the pain was between 78 - 84% successful, those with typical TN
had a success rate of 88+ % not really a significant difference.
When we first started keeping track of TN we thought that 100% of the time it was an artery that had caused the
pain. After keeping track of the first 1000 patients we operated on we found that in 39% of the cases it was
either a vein or artery, or both. When we re-operated on individuals, we thought that the felt had slipped. What
we found when we got back in there is that it was a vein or two that was now rubbing on the nerve.
Q. Is there a problem with Teflon that is used to block the vessel in the MVD?
A. It never was Teflon. It never has nor will ever be approved for use in humans. Teflon is a brand mane owned
by the DuPont Co. For a very specific chemical compound, so while it does very nicely in the bottom of cooking
pots and pans it doesn’t ever go into anybody head. What is in your head if you have had a MVD is: PTFE ,
polytetrafluoroethylene. This was specifically designed for a patch in heart surgery. Surprising enough we know
of only one person having an adverse reaction to this patch out of 27-28,000 surgeries, so it works extremely
well in the MVD’s.More importantly Teflon to get the POMA or POFA either one to get the carcinogenic (cancer)
that every one talks about, you would have to heat the Teflon to 800 degrees, so unless you have a stove
different than the one I have no one is heating their pans to 800*, plus you would have to stand with your face
over the pan for hours on end at 800* to get cancer.
Q. Why does Gamma Knife only work about 65% of the time?
More importantly why does it come back in about three years in 18-20% of the patients?
A. It has to do with a very simple phenomenon, this is a living structure that you can’t see everything in it. One of
the problems is there is a built in error rate in all mechanical devices. It ranges from about, .9-1.2 mm, you say
well that’s not too bad. But in an MRI the error rate of the MRI is 3mm with the MRI and the Gamma Knife, there
is somewhere between 5-7mm error rate, as with any mechanical device.Sometimes after surgery or the Gamma
Knife patients still complain of pain, usually not as sever. The we redo the McGill Questionnaire. When you have
had a lot of pain it will shift to the central nervous system. That is where ALL pain ends up. Sometimes after the
procedures have been taken care of the pain, the central nervous system still will register pain. This can be
handled with low doses of medication.
Q. You have been on a high dose of medication and your feeling good and you reduce the medication until you
are on a very low dose. Then you have an attack, which seems like it is worse than before.
A. Generally when you feel an attack coming on, you start to increase your medication until it is controlled.
Sometimes however, the attack is so sever that you go to the emergency room. You get it under control, reduce
your medication, and bang, weeks months, even many months, it comes back! This happens to most patients
about ½ of the time. What that tells you is you should always be on the medication, going from low dose to high
dose when you need it. Even when you go months with no pain and think you can go off the medication entirely.
You should always have some of the medication in your system. There is no data that one attack begets
another attack.
Q. How many neurosurgeons do the MVD?
A. There are about 243 surgeons across the Unites States that do them, with the average surgeon doing less
than one each year. The success rate is uniformly good. So whether you go to a high volume center or a center
that only does one a year there does not seem to be a lot of difference in the complications, which are: between
.8 and 1.8 % hearing loss, 3% chance that the fluid from the brain will leak through (CSF), chance of stroke
about 1 in a 1,000, death from the anesthesia is about 1 in 2,500, chance of infection is 1 in 100. These are the
standard risks.
Q. How many ways other than MVD is there to help with TN?
A. There a number, but there are three which are more widely used.
-Glycerol which doesn’t injure the nerve very much, and is very specific.
-Balloon compression how much pressure is needed and how long to be the most effective. The balloon
compression goes after the type 2 fibers. So far there is about an 82%+ success rate depending on how many
branches of the nerves we are trying to get. We have a 30% recurrence rate at about 8.5 years. We think this is
about how long balloon compression lasts. Some will get more and some less.
-Gamma Knife (which we have already talked about extensively)
Q. What is the theory of medication vs. surgery.
A. If I can treat you with medications rather than cut a hole in your head that has got to be better!
The problem with medicine, it doesn’t work on everybody, like tegretol works about 70% of the time in about 70
percent of the patients.After looking at over 700 patients, every one who was on medication eventually did
something else other than medication or (died).
In England after following 100 Brits, the doctor found that after 12.5 years all the patients went on to some sort
of surgery.
Every one of the medicines we use are not designed to be in humans therefore you are going to know the
medication is in you, and you will be different in some sort of way.
When the medication works for a long time then the body starts to make new receptors and then it will stop
working and you have to go to a different medication. We know that with prolonged use the body will eventually
reject it and the medication will no longer be effective.
A question always asked, is did the dentist do this! We have done experiments where we have shown a really
scary or tense movie and then a comedy and we know that the nerve receptors react differently, the same as if
you were experiencing trauma when you watch a scary movie. We clearly see a different reaction just like a pain
stimulus. We know the system can be affected even if you do not touch it.
Biofeedback is more likely to help with the anxiety and stress involving TN as opposed to causing any drastic
reductions I the pain intensity. However, used as part of a multi pronged effort, it will help.
We all know that there are triggers that start the pain. We had a patient years ago in Philadelphia that every
time he thought of a hamburger, he got pain. We all know that food is a trigger. How many times have you seen
a picture of a very appetizing meal and you could actually taste it. The mind can trigger the thought of eating a
hamburger and when this individual did that he got his TN pain.
All the teeth are affected by the fifth nerve. The fifth nerve can be hurt by hurting the teeth, the jaw, the face the
tongue. Now the question is: is this what started the TN or where you are at the time. Remember no one is born
with 32 bad teeth, it has to be something else causing the problem. Pain does not jump from tooth to tooth.
Either they pulled the wrong tooth which is very rare. In all probability the only thing that ties them together is the
fifth nerve. Which relates more than likely to TN.
When you are with your physician have him tell you how in his work up, your diagnosis isn’t my fifth nerve. Or,
tell me how you know it is my teeth. Pin the doctor down. Ask the doctor how they got the diagnosis they came
up with.I can give you enough Vicodin to make any pain go away temporarily. But I haven’t done anything to
figure where it came from.Is TN inherited? We think that it may be in about 8% of the people who have TN in one
generation can expect to see it in the next generation. Another way to put it is about four people have TN out of
400,000.
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