Care and Share Meeting
March 4, 2006
Recap by: Don Jeffries
Each person shared their experiences, the good the bad and the (fill in your own word)!
We went from a gamma knife that has left numbness and tingling on the side of her face, and
does it ever go away? To today she is pain free. But has the tingling. For some the tingling
has gone away, others it is still there, and always will be. Then there is the person that has
had two MVD’s and a gamma knife and the TN is back!Others are on so much medication
that they can’t drive, they forget to take their meds, spend hours each day sleeping and when
they are awake they are in a stupor. The type of meds range from the A to Z. Some work better
than others. Some work for some of the people but not others. We are individuals who need
to be treated differently, and the medications work differently for each one of us.With very few
exceptions, every one went to their dentist when they first had signs of TN. Some of the people
even went so far as to demand that the dentist pull the tooth even though he said that wasn’t
the problem. They would not leave until the tooth was pulled. Of course that led to problems.
One gentleman had four of his back teeth pulled trying to get rid of the pain. He has had a
balloon therapy which did help for a little while, but it is back. Now he goes to the dentist and
gets a nerve block to get rid of the pain.One person went to the dentist because she had an
infection. The infection went into the jaw bone. It was scraped, but the infection also made its
way to the TN nerve. The dental surgeon did get rid of the infection, but they kept doing other
dental procedures to get rid of the pain. When they finally thought that the infection had
damaged the nerve they put her on medication. They finally sent her to a neurosurgeon. She
has had two gamma knife procedures.
The first one worked far a little while, then the second one didn’t work at all. She finally got to
Dr. Alksne, who explained that the nerve was damaged and that cause’s neuropathy
(damaged or disease of the nerve). She has constant pain, not the electrical shock pain that
most others have. Right now the only thing that she has is being heavily medicated.One time
when the pain started in my eye, light made it worse. My husband came home and I was
wearing two pair of sunglasses in the house and no lights on and I was wishing I could get it
darker. After being on many medications, and sometimes a combination of meds, I decided
on the Gamma Knife. I’m now pain free for two years.One gentleman has only had TN for
about 8 months.
His doctor put him on tegretol, but too much to begin with, and the side affects were not good.
So he started to do research. After doing the research he thought he had a dental problem. So
he went back to his regular doctor, and talked about tegretol and starting out gradually and
working up. Right now he is doing ok after experimenting with the amount he is taking. But he
doesn’t know what’s in store later, after hearing about those that have talked before him and
the short video that was shown.As one of the speakers said, "if it weren’t for this group, some
of us would be in real trouble!This group has so much information and is so helpful. They
know who to go to and what to do, it is truly amazing, and I am so thankful for what they are
doing.
TN - How to rule out the wrong treatment
Robert L. Merrill, D.D.S.,& Steven B. Radford, D.D.S.
Recap by don Jeffries
Pre-trigeminal neuralgia a problem that often mimics a toothache or a temporomandibular
joint disorder. Pre-trigeminal is described as an intermittent aching pain, located in the tooth
or jaw, which lasts minutes to hours, and eventually converts to TN.
A toothache is difficult to diagnose and treat appropriately when traditional dental diagnostic
test results are negative. A study looked at 61 patients who were treated for pre-trigeminal or
TN. Of those 61% were incorrectly diagnosed and treated.
Inappropriate dental or TMJ therapies are usually undertaken without carefully diagnosing the
pain. Patients who are finally diagnosed with TN often have had multiple dental procedures to
alleviate the pain.
The protocol for TN treatment, as with any orofacial pain condition should begin with
pharmacological therapy and only move to more invasive procedures if the condition
becomes refractory or it side effects are significant.
When medications are no longer effective or the patient can longer tolerate the drugs
because of the side effects, then consider other alternatives: MVD, Gamma Knife, Balloon
therapy, Etc.
Before these should be considered, an in depth medical history of the primary symptoms,
prior treatments, the condition and the conditions progression should be undertaken.
Toothache can be caused by active myofascial trigger points in many head and neck
muscles. The myofascial examination should uncover any referring trigger points and lead to
appropriate therapies.
Atypical toothache is characterized by a continuous, mostly non-variable, remitting pain. When
the toothache is treated with a dental procedure, the pain may migrate to another tooth in the
quadrant.
Facial migraine is characterized by an intermittent dull to throbbing pain usually unilaterally in
the occipitomastoid region (that part of the head bone that hold the cerebellum in place), and
into the inferior maxillary sinus area. The pain has the temporal nature of migraine headache
four to 72 hour duration). Sometimes occurring two to four times a week.
If autonomic (the system of nerves and ganglia that innervates the blood vessels, heart,
smooth muscles etc and controls their involuntary functions) symptoms - conjunctive
injection, congestion, facial flushing or other facial autonomic symptoms accompany the pain,
cluster headache may be considered. This pain usually lasts 15 minutes to 1 ½ hours. It is
very intense and may strike one to eight times per day. Usually these episodes occur in
groups or ‘clusters’ and like TN may go into remission for months or even years.If there is a
positive response to medication, then a thin cut MRI should be prescribed to rule out
demyelization disorder or a tumor in the region of the cerebellopontine angle.
TN is a neurological condition which may appear as a toothache but does not represent tooth
pathosis. The differential diagnosis of TN may be diagnosed as a toothache that presents no
apparent local pathosis after a thorough work-up, including diagnostic blocks, and
medication, as presented earlier, should all be considered before doing irreversible surgical
procedures on the tooth.
March 4, 2006
Recap by: Don Jeffries
Each person shared their experiences, the good the bad and the (fill in your own word)!
We went from a gamma knife that has left numbness and tingling on the side of her face, and
does it ever go away? To today she is pain free. But has the tingling. For some the tingling
has gone away, others it is still there, and always will be. Then there is the person that has
had two MVD’s and a gamma knife and the TN is back!Others are on so much medication
that they can’t drive, they forget to take their meds, spend hours each day sleeping and when
they are awake they are in a stupor. The type of meds range from the A to Z. Some work better
than others. Some work for some of the people but not others. We are individuals who need
to be treated differently, and the medications work differently for each one of us.With very few
exceptions, every one went to their dentist when they first had signs of TN. Some of the people
even went so far as to demand that the dentist pull the tooth even though he said that wasn’t
the problem. They would not leave until the tooth was pulled. Of course that led to problems.
One gentleman had four of his back teeth pulled trying to get rid of the pain. He has had a
balloon therapy which did help for a little while, but it is back. Now he goes to the dentist and
gets a nerve block to get rid of the pain.One person went to the dentist because she had an
infection. The infection went into the jaw bone. It was scraped, but the infection also made its
way to the TN nerve. The dental surgeon did get rid of the infection, but they kept doing other
dental procedures to get rid of the pain. When they finally thought that the infection had
damaged the nerve they put her on medication. They finally sent her to a neurosurgeon. She
has had two gamma knife procedures.
The first one worked far a little while, then the second one didn’t work at all. She finally got to
Dr. Alksne, who explained that the nerve was damaged and that cause’s neuropathy
(damaged or disease of the nerve). She has constant pain, not the electrical shock pain that
most others have. Right now the only thing that she has is being heavily medicated.One time
when the pain started in my eye, light made it worse. My husband came home and I was
wearing two pair of sunglasses in the house and no lights on and I was wishing I could get it
darker. After being on many medications, and sometimes a combination of meds, I decided
on the Gamma Knife. I’m now pain free for two years.One gentleman has only had TN for
about 8 months.
His doctor put him on tegretol, but too much to begin with, and the side affects were not good.
So he started to do research. After doing the research he thought he had a dental problem. So
he went back to his regular doctor, and talked about tegretol and starting out gradually and
working up. Right now he is doing ok after experimenting with the amount he is taking. But he
doesn’t know what’s in store later, after hearing about those that have talked before him and
the short video that was shown.As one of the speakers said, "if it weren’t for this group, some
of us would be in real trouble!This group has so much information and is so helpful. They
know who to go to and what to do, it is truly amazing, and I am so thankful for what they are
doing.
TN - How to rule out the wrong treatment
Robert L. Merrill, D.D.S.,& Steven B. Radford, D.D.S.
Recap by don Jeffries
Pre-trigeminal neuralgia a problem that often mimics a toothache or a temporomandibular
joint disorder. Pre-trigeminal is described as an intermittent aching pain, located in the tooth
or jaw, which lasts minutes to hours, and eventually converts to TN.
A toothache is difficult to diagnose and treat appropriately when traditional dental diagnostic
test results are negative. A study looked at 61 patients who were treated for pre-trigeminal or
TN. Of those 61% were incorrectly diagnosed and treated.
Inappropriate dental or TMJ therapies are usually undertaken without carefully diagnosing the
pain. Patients who are finally diagnosed with TN often have had multiple dental procedures to
alleviate the pain.
The protocol for TN treatment, as with any orofacial pain condition should begin with
pharmacological therapy and only move to more invasive procedures if the condition
becomes refractory or it side effects are significant.
When medications are no longer effective or the patient can longer tolerate the drugs
because of the side effects, then consider other alternatives: MVD, Gamma Knife, Balloon
therapy, Etc.
Before these should be considered, an in depth medical history of the primary symptoms,
prior treatments, the condition and the conditions progression should be undertaken.
Toothache can be caused by active myofascial trigger points in many head and neck
muscles. The myofascial examination should uncover any referring trigger points and lead to
appropriate therapies.
Atypical toothache is characterized by a continuous, mostly non-variable, remitting pain. When
the toothache is treated with a dental procedure, the pain may migrate to another tooth in the
quadrant.
Facial migraine is characterized by an intermittent dull to throbbing pain usually unilaterally in
the occipitomastoid region (that part of the head bone that hold the cerebellum in place), and
into the inferior maxillary sinus area. The pain has the temporal nature of migraine headache
four to 72 hour duration). Sometimes occurring two to four times a week.
If autonomic (the system of nerves and ganglia that innervates the blood vessels, heart,
smooth muscles etc and controls their involuntary functions) symptoms - conjunctive
injection, congestion, facial flushing or other facial autonomic symptoms accompany the pain,
cluster headache may be considered. This pain usually lasts 15 minutes to 1 ½ hours. It is
very intense and may strike one to eight times per day. Usually these episodes occur in
groups or ‘clusters’ and like TN may go into remission for months or even years.If there is a
positive response to medication, then a thin cut MRI should be prescribed to rule out
demyelization disorder or a tumor in the region of the cerebellopontine angle.
TN is a neurological condition which may appear as a toothache but does not represent tooth
pathosis. The differential diagnosis of TN may be diagnosed as a toothache that presents no
apparent local pathosis after a thorough work-up, including diagnostic blocks, and
medication, as presented earlier, should all be considered before doing irreversible surgical
procedures on the tooth.
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