RECAP JULY 8TH 2006 MEETING
By: Don Jeffries
SHARE AND CARE
Dorothy Jacobs had quadruple by pass surgery last month and we all wish her a fast recovery. Jean Myer
our treasurer hopefully is on the mend so we can see her smiling face at our next months meeting.
We also conducted a little bit of business: We have a few extra dollars in our budge, it was moved seconded
and carried that we give Cherie $200 for her trip to the National Convention.
We welcomed two new people to our group today who shared their stories with us. Lenore Sears and Mary
Palmer.
Mary: About five years ago I was having orthodontia work done and pain started coming into my left jaw, it
went away and then six months later I had the worst tooth ache in my life, so I went back to the dentist and
they put braces on me to move my teeth around. In two years I had the braces off then three years after that
the pain comes back again. The pain didn’t come and go it just ‘stayed,’ very constant, terrible pain. Maybe
forty-five minutes at a time. So again I go to my dentist. He checks all my teeth and says there is nothing
wrong with your teeth. I think you have trigeminal neuralgia (TN).
I go to my GP and he gives me some (pemaset) and at the same time tested me for MS. I went through al
the MRI’S looking for something touching the nerve and they found nothing. Then one of my episodes lasted
for 16 hours non stop. This was on a Sunday. Then I started taking vicodin and it didn’t touch it. After 16
hours it went away, and I didn’t have any pain for 5 or 6 months. After that they put me on tegretol. After
another five or six months the pain went away, and I am off tegretol. So I am looking for any help that I can
find.
It was suggested that she contact Dr. Alksne, and at the same time set up an appointment for a thin-cut-MRI.
A regular MRI generally will not show a vessel or artery touching the trigeminal nerve. In some radiology
facilities they automatically do the think cut, but in most facilities, they do not unless it is specifically asked for.
Lenore: I thought I was all alone in the world until I saw your message in the newspaper. I am so thankful to
be here today. In September 2004 I started with a very unusual electrical something tingling right up here. I
thought it would go away instead of going away it became more tickly. Then in October I had a shoulder
replacement. After the surgery the tingling became a white hot poker of pain in my right eye that occurred
every thirty to forty seconds. Then it would leave and come back. One day brushing my teeth the pain became
sever. I went to my GP and he sent me to an ophthalmologist thinking it may be a problem with my eye. He
couldn’t find any thing so he sent me to a neurologist. I had a MRI, (don’t know if it was a thn-cut). I have
been under the care of the neurologist since Nov. 0f 2004.
I started on tegretol but after a-while they took me off because they thought I was having some liver
problems. Then they put me on neurontin. I started with 2400mg per day. Because of the liver issue, they
have cut me back to 1200mg per day. They now want me to take *lyrica does any one here know anything
about *lyrica? Ans. You are going to gain weight!
I do water aerobics three times a week, I play golf, I’m president of the women’s club, I try to keep very active.
When you tell me I will gain more than I have already gained, I wonder if it is really worth it?
The *lyrica at 1200mg is keeping the pain at bay. Every now and then if I drink something cold, or move my
mouth, blow my nose, or sneeze it will give me the lightning pain. It doesn’t stay, but then it comes back. That’
s my story.
Q. We are going to take a cruise and an extended airplane trip to be there. Have any of you had any difficulty
or reaction to the pressurization or depressurization in the airplane?
A. NEVER–so far as we know there has been no one who has reported a problem to our group or the
National Organization that we know of.
Q. Does it ever go away?
A. Never in your life time. Hopefully with the MVD, some people may get a life time of being pain free. We just
don’t know. With the Gamma Knife 5-15+ years.. It is so new we don’t know how long it will last. But it can be
done multiple times.
However the success rate of the Gamma Knife is only about 65% Where the MVD runs between 90-93%
success rate.
*LYRICA was designed just to treat the burning, stabbing, shooting symptoms of nerve pain caused by
diabetes or shingles. When taken as directed, LYRICA can give you pain relief you can count on as soon as
1 week after you start taking it. Common pain medicines like aspirin may not work very well for this kind of
pain. Talk to your doctor. Together, you can decide if LYRICA is right for you.
Is Atypical Trigeminal Neuralgia a variation
of Typical Trigeminal Neuralgia?
By: Kaufman ,A.M. Remple, Manitoba, Canada
Recap: Don Jeffries
The characteristics and treatment options of typical Trigeminal Neuralgia (tTN) are well established.
However, many patients present with additional symptoms of prominent, constant or prolonged TN pain or
numbness that may br called atypical trigeminal neuralgia (aTN). For these sufferers, the disease etiology
and treatment options are not so will defined.
We assessed a consecutive series of patients treated with MVD for either (tTN) or (aTN). The nature and
severity of neurovascular contact upon the trigeminal nerve root and the postoperative outcome were
independently assessed.
MVD was performed in 129 cases with (tTN) and 27 cases with (aTN). Significant neurovascular contact
upon the trigeminal nerve root found in all cases. The operative findings were similar in the two groups, with
superior cerebellar involvement in 75% of all cases. Surgical outcomes were excellent (pain free), no
medications or good (75% pain relief, no or occasional medications in 82% with (tTN) and 74% with (aTN).
There were no significant outcome predictions in either group.
Trigeminal Neuralgia in its typical or atypical forms is universally associated with neurovascular contact
upon the trigeminal nerve root. MVD success rates are somewhat lower for those with (aTM) although this
surgery; remains a favorable treatment option for suffers with either typical or atypical forms of trigeminal
neuralgia.
By: Don Jeffries
SHARE AND CARE
Dorothy Jacobs had quadruple by pass surgery last month and we all wish her a fast recovery. Jean Myer
our treasurer hopefully is on the mend so we can see her smiling face at our next months meeting.
We also conducted a little bit of business: We have a few extra dollars in our budge, it was moved seconded
and carried that we give Cherie $200 for her trip to the National Convention.
We welcomed two new people to our group today who shared their stories with us. Lenore Sears and Mary
Palmer.
Mary: About five years ago I was having orthodontia work done and pain started coming into my left jaw, it
went away and then six months later I had the worst tooth ache in my life, so I went back to the dentist and
they put braces on me to move my teeth around. In two years I had the braces off then three years after that
the pain comes back again. The pain didn’t come and go it just ‘stayed,’ very constant, terrible pain. Maybe
forty-five minutes at a time. So again I go to my dentist. He checks all my teeth and says there is nothing
wrong with your teeth. I think you have trigeminal neuralgia (TN).
I go to my GP and he gives me some (pemaset) and at the same time tested me for MS. I went through al
the MRI’S looking for something touching the nerve and they found nothing. Then one of my episodes lasted
for 16 hours non stop. This was on a Sunday. Then I started taking vicodin and it didn’t touch it. After 16
hours it went away, and I didn’t have any pain for 5 or 6 months. After that they put me on tegretol. After
another five or six months the pain went away, and I am off tegretol. So I am looking for any help that I can
find.
It was suggested that she contact Dr. Alksne, and at the same time set up an appointment for a thin-cut-MRI.
A regular MRI generally will not show a vessel or artery touching the trigeminal nerve. In some radiology
facilities they automatically do the think cut, but in most facilities, they do not unless it is specifically asked for.
Lenore: I thought I was all alone in the world until I saw your message in the newspaper. I am so thankful to
be here today. In September 2004 I started with a very unusual electrical something tingling right up here. I
thought it would go away instead of going away it became more tickly. Then in October I had a shoulder
replacement. After the surgery the tingling became a white hot poker of pain in my right eye that occurred
every thirty to forty seconds. Then it would leave and come back. One day brushing my teeth the pain became
sever. I went to my GP and he sent me to an ophthalmologist thinking it may be a problem with my eye. He
couldn’t find any thing so he sent me to a neurologist. I had a MRI, (don’t know if it was a thn-cut). I have
been under the care of the neurologist since Nov. 0f 2004.
I started on tegretol but after a-while they took me off because they thought I was having some liver
problems. Then they put me on neurontin. I started with 2400mg per day. Because of the liver issue, they
have cut me back to 1200mg per day. They now want me to take *lyrica does any one here know anything
about *lyrica? Ans. You are going to gain weight!
I do water aerobics three times a week, I play golf, I’m president of the women’s club, I try to keep very active.
When you tell me I will gain more than I have already gained, I wonder if it is really worth it?
The *lyrica at 1200mg is keeping the pain at bay. Every now and then if I drink something cold, or move my
mouth, blow my nose, or sneeze it will give me the lightning pain. It doesn’t stay, but then it comes back. That’
s my story.
Q. We are going to take a cruise and an extended airplane trip to be there. Have any of you had any difficulty
or reaction to the pressurization or depressurization in the airplane?
A. NEVER–so far as we know there has been no one who has reported a problem to our group or the
National Organization that we know of.
Q. Does it ever go away?
A. Never in your life time. Hopefully with the MVD, some people may get a life time of being pain free. We just
don’t know. With the Gamma Knife 5-15+ years.. It is so new we don’t know how long it will last. But it can be
done multiple times.
However the success rate of the Gamma Knife is only about 65% Where the MVD runs between 90-93%
success rate.
*LYRICA was designed just to treat the burning, stabbing, shooting symptoms of nerve pain caused by
diabetes or shingles. When taken as directed, LYRICA can give you pain relief you can count on as soon as
1 week after you start taking it. Common pain medicines like aspirin may not work very well for this kind of
pain. Talk to your doctor. Together, you can decide if LYRICA is right for you.
Is Atypical Trigeminal Neuralgia a variation
of Typical Trigeminal Neuralgia?
By: Kaufman ,A.M. Remple, Manitoba, Canada
Recap: Don Jeffries
The characteristics and treatment options of typical Trigeminal Neuralgia (tTN) are well established.
However, many patients present with additional symptoms of prominent, constant or prolonged TN pain or
numbness that may br called atypical trigeminal neuralgia (aTN). For these sufferers, the disease etiology
and treatment options are not so will defined.
We assessed a consecutive series of patients treated with MVD for either (tTN) or (aTN). The nature and
severity of neurovascular contact upon the trigeminal nerve root and the postoperative outcome were
independently assessed.
MVD was performed in 129 cases with (tTN) and 27 cases with (aTN). Significant neurovascular contact
upon the trigeminal nerve root found in all cases. The operative findings were similar in the two groups, with
superior cerebellar involvement in 75% of all cases. Surgical outcomes were excellent (pain free), no
medications or good (75% pain relief, no or occasional medications in 82% with (tTN) and 74% with (aTN).
There were no significant outcome predictions in either group.
Trigeminal Neuralgia in its typical or atypical forms is universally associated with neurovascular contact
upon the trigeminal nerve root. MVD success rates are somewhat lower for those with (aTM) although this
surgery; remains a favorable treatment option for suffers with either typical or atypical forms of trigeminal
neuralgia.
July Care and Share Meeting
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