Recap of the Sept. 2006 meeting
By: Don Jeffries
Marlene Brenner opened the meeting since Cherie was at the National Conference in Portland, OR. Marlene
introduced Dr. John Mobilia, DDS. Marlene asked if he would mind giving us a few minutes to hear the stories of
Sandy and Maria, who had Microvascular Decompression Surgery in the last few weeks by Dr. Alksne at Thornton
Hospital.
Sandy: I had my surgery two weeks ago, and I am very emotional about my experience and its wonderful success.
When I first had TN about ten years ago, there was a lot of pain, but the medications were worse than the pain. After
a few weeks I had pain, but nothing like I had this time. And in the ten years, I had no pain, nothing. But in April while
driving home I had a flash and I thought now what? Between April and June, the pain intensified each time and it was
much more intense and painful than anything I could every imagine being! Even with the medications (maximum
amounts of Tegretol and Neurontin) it got worse.
I went to the internist and he said an MRI. I thought, “I’m claustrophobic and I can never go in there! The pain was so
bad that I thought with drugs I can do it, so they put me out. They sent the MRI to Dr. Alksne who very quickly he
scheduled me for surgery.
When I was getting ready for surgery, they asked me how I was feeling, and I said I am scared. He said don’t worry
about that, we will give you something for that. Just think of something Happy. While they were talking to me I am sure
they were giving me something.
Q. Where is your incision?
A. There is no incision. They drill a little hole behind your ear about the size of quarter, and then go up into the
cranial area and move the blood vessel off the nerve and block it with a patch of some kind to keep the vessel from
over lapping the nerve again.
I asked to borrow the book “Striking Back” to read, but I really didn’t want to know too much about what they were going
to do. I think we need to be proactive TODAY, but I didn’t want to know a lot of the stuff that is in the book. I know that
we must be informed now, that we did not have to be in years past.
I have been married to a neck and head surgeon since I was about 17 years old, so I was not afraid of surgery. After I
met Dr. Alksne, he was kind and patient with me, explaining everything I wanted to know.
After the surgery, I don’t remember being in any pain. I had a little bit of crackling in my ear, and some loss of
hearing. Which Dr. Alksne said, that most of my hearing would come back over a period of time.
Q. How long were you in the hospital?
A. I went home after two and half days. Then I was supposed to gradually go off the Tegretol and Neurontin. It took
about two week to get off the meds, and I am on NO medication now. I don’t take pills for pain or for anything.
I would wish each of you the incredible success that I have had with this surgery.
Maria: I had my Microvascular Decompression Surgery five weeks ago with Dr. Alksne.
My experience was the same as Sandy’s. Dr. Alksne, the anesthesiologist, the nurses were all just great. They went
out of their way to make sure they answered all my questions and to reassure me that everything would be ok.
They wanted to make sure that I understood that coming out of the surgery after being on so much medication, that I
would come off of it gradually.
I went home just two and half days after the surgery. I felt great the next day and today five weeks later I have no pain,
no medication, I feel fantastic. When they discharged me Dr. Alksne said you are as good as we can get you! I am so
blessed.
How long have you had TN? I went to see my doctor in January of this year, 2006. He put me on some medication,
and after about two weeks I went back to him and said I am still having those same symptoms! He examined me again
and after a while he said do you think we should send you to a specialist? He turned to my husband and asked him.
My husband said yes, because he has seen the pain that I go through. He said I think you have TN, so I am going to
send you to a neurologist.
The specialist said I think your Regular Doctor is on the right track, but I am going to send you for some blood work
and an MRI. Maybe we can find out what is going on after that. In a week you come back and we will discuss what is
going on and what we can do about it. He told me they found out what the trouble was. You have a blood vessel
looping onto the trigeminal nerve, and that it could be fixed! Which made me very happy because I thought I was
going crazy. The last time the pain was just terrible, so he tells me I am going to send you to a neurosurgeon, which
was Dr. Alksne.
Dr. Alksne gave me many different options. My husband and I decided on the surgery. Because I work in the
neurology and the neurosurgery dept. surgery appealed to me more than the concept of medication and its side
affects on your body. Having worked in this department before, I new about all the medications and the side affects.
After coming to this meeting, I feel that I have been blessed. Hearing that some of you have had this pain and
everything for years, even though it comes and then goes away. I had the pain only since last January, and I didn’t
want to have it for years!
I had many trigger points: Air conditioning, putting on make up, a breeze, most anything would set it off. Dr. Alksne
thought from the MRI, that I should have had much more pain than I was having, and I tell you I don’t know how it could
have been worse.
Thank goodness for Dr. Alksne, I think I would have gone crazy if I would have to have this condition for years.
Dr. John Mabilia DDS
When I came to talk to you a number of years ago, I explained all about TN, what it was, how to diagnosis it, the
different treatments and the different medications that was being recommended for treatment.
Today you have more current information than I have on all of the above things mentioned. Once diagnosed, TN
usually strikes the jaw and cheek both, jaw only, cheek only, eye, forehead and check, or all three branches. What
causes the pain to flair up are trigger points?
Trigger pints are such things as: wind, cold, brushing teeth, blowing your nose, a touch, a kiss, bending over or laying
down/getting up. I am sure that some of you probably have other that I have not mentioned.
If there is any way that you can brush your teeth, BRUSH; there are too many consequences of not brushing. We will
go over some alternatives later.
Q. Some people say they can’t use an eclectic toothbrush but they can use the old fashioned kind.
A. There is very little difference between manually brushing your teeth, and using an electric brush. Studies have
shown that if you do a good job manually your teeth are as clean as using the electric brush.
The electric brush is good for some people who have a difficult time using a manual brush.
There is nothing to show that an electric toothbrush will trigger a session of TN over a regular tooth rush.
One of the consequences of TN is gingivitis, where bacteria invades the periodontal tissues, forming pockets of
infection that destroy the periodontal ligament and dissolve away the bone around the tooth. This is called
periodontitis. Flossing removes plaque, which minimizes the chances of developing periodontitis and losing ones teeth
later.
We also know that when your gum becomes infected, and it is not taken care of the bacteria has direct access to the
blood stream. They are now equating periodontitis disease to coronary artery disease. Gingivitis/ periodontitis disease
also affects the bone that holds the teeth. If this is not taken care of, you will lose the tooth, in that there is nothing to
hold it in place.
Dilantin hyperplasia - What happens is the gum is responding to plaque. There will be no problem if you keep your
gums very clean! If you don’t keep your gums clean, the plaque and tarter causes the gums to start receding. If you
start cleaning your gums regularly, the gums will start to go back down to normal.
Now, hyperplasia once it starts to grow it will not go away, the only way to stop the gums from growing is to have
surgery. It will never be the same. If you keep your gums in good shape you will never have this problem.
If you can’t keep your gums clean because of TN there are oral rinses that work great. There is periodontal (or)
periodex (?) and perioguard, and periomed, these are 1.2% chlorhexidine. Peroxide is also very good. Salt water, and
Listerine (10%+ alcohol), also is very good, but it is not the alcohol that kills the bacteria. Most mouthwashes have oils
of different leaves that kill the bacteria. Most of these mouthwashes do not control the bacteria that make up gingivitis;
it kills the bacteria that cause cavities in the teeth.
Dental schools still are not touching TN with any effective knowledge. They may have a one-day lecture.
There is new product on the market to let you know how clean your mouth is or whether you have brushed your teeth
correctly. Agent Blue. You remember the little red pill. Well this is a mouthwash that you do after you have brushed.
It will show up blue on your teeth and gums where you have not cleaned them. For kids it is an excellent product. It
would also help those of you with TN to show where you need to concentrate your cleaning.
Q. How often does a dental procedure cause TN?
A. To my knowledge NEVER! There has never been a documented case of dentistry causing TN. Even when a root
canal has been performed where the dentist drilled too deep. That will not cause TN. (TN) is caused by a blood
vessel rubbing on the trigeminal nerve, eventually rubbing away the Protective myelin sheath.
Q. Why is it that we as humans have more dental problems than animals out in the wild?
A. Life style, diet, and longevity. Also, we know that dinosaurs have had tooth abscesses; many animals have had
tooth rot.
Q. How can you tell if a tooth is infected?
A. Number of ways: X-Ray, hot and cold applied to the tooth. The tooth only has one nerve in it, and it is a pain nerve.
The thing in going to your dentist that you should know is: know your trigger point/s. What brings on the pain? And, at
all costs try to keep extremely good hygiene with your mouth, because there are so many things that can affect you
when you don’t practice good oral hygiene.
One of the reasons I am here to day is because I have some patients who have TN, and it is a real challenge to try to
help these individuals.
Thank you to everyone!!!!!
I want to thank all the people who helped me get to the Conference this year. With the help of the San Diego TN
group, Gamma Knife Center and other members of our group and friends who helped me out so that I could go to the
conference. I will be putting my notes together over the next month and will be speaking in November about what I
have learned. I was very busy going from meeting to meeting and did my talk about Service Dogs.
We now know that it should have said, “Service Dogs for People with TN and other Facial Pains” instead of just
“Service Dogs”. Most people probably thought it was for people who are blind and didn’t realize what I was trying to
share with them. There were about 25 who came to my talk and I got nervous but made it through the whole thing. My
daughter who lives in Portland videotaped me!! Everyone said that I did a great job but my daughter told me that I was
a little nervous when it came to the technical parts. One the personal levels I was calm. I knew that my daughter would
be honest with me.
I was able to get “one on one” time with Dr. Casey and many of the other doctors. Dr. Casey just loves Jake and so
does Dr. Gremillion who is a dentist. I sure wish that he were here in San Diego!!!!
The greatest part of this and all the conferences, the doctors, dentists, and everyone who wants to give their time just
for us, pay their own way. This makes it just like a family. Everyone is so wonderful and every talk was right on time.
I got the message into the San Diego Union Paper. So, if anyone gets that paper, please look it up and bring it to the
next meeting. I would like to see it and it should be in the “Community Section”.
Cherie Sato, San Diego Support Group Leader
Return to Home Page
By: Don Jeffries
Marlene Brenner opened the meeting since Cherie was at the National Conference in Portland, OR. Marlene
introduced Dr. John Mobilia, DDS. Marlene asked if he would mind giving us a few minutes to hear the stories of
Sandy and Maria, who had Microvascular Decompression Surgery in the last few weeks by Dr. Alksne at Thornton
Hospital.
Sandy: I had my surgery two weeks ago, and I am very emotional about my experience and its wonderful success.
When I first had TN about ten years ago, there was a lot of pain, but the medications were worse than the pain. After
a few weeks I had pain, but nothing like I had this time. And in the ten years, I had no pain, nothing. But in April while
driving home I had a flash and I thought now what? Between April and June, the pain intensified each time and it was
much more intense and painful than anything I could every imagine being! Even with the medications (maximum
amounts of Tegretol and Neurontin) it got worse.
I went to the internist and he said an MRI. I thought, “I’m claustrophobic and I can never go in there! The pain was so
bad that I thought with drugs I can do it, so they put me out. They sent the MRI to Dr. Alksne who very quickly he
scheduled me for surgery.
When I was getting ready for surgery, they asked me how I was feeling, and I said I am scared. He said don’t worry
about that, we will give you something for that. Just think of something Happy. While they were talking to me I am sure
they were giving me something.
Q. Where is your incision?
A. There is no incision. They drill a little hole behind your ear about the size of quarter, and then go up into the
cranial area and move the blood vessel off the nerve and block it with a patch of some kind to keep the vessel from
over lapping the nerve again.
I asked to borrow the book “Striking Back” to read, but I really didn’t want to know too much about what they were going
to do. I think we need to be proactive TODAY, but I didn’t want to know a lot of the stuff that is in the book. I know that
we must be informed now, that we did not have to be in years past.
I have been married to a neck and head surgeon since I was about 17 years old, so I was not afraid of surgery. After I
met Dr. Alksne, he was kind and patient with me, explaining everything I wanted to know.
After the surgery, I don’t remember being in any pain. I had a little bit of crackling in my ear, and some loss of
hearing. Which Dr. Alksne said, that most of my hearing would come back over a period of time.
Q. How long were you in the hospital?
A. I went home after two and half days. Then I was supposed to gradually go off the Tegretol and Neurontin. It took
about two week to get off the meds, and I am on NO medication now. I don’t take pills for pain or for anything.
I would wish each of you the incredible success that I have had with this surgery.
Maria: I had my Microvascular Decompression Surgery five weeks ago with Dr. Alksne.
My experience was the same as Sandy’s. Dr. Alksne, the anesthesiologist, the nurses were all just great. They went
out of their way to make sure they answered all my questions and to reassure me that everything would be ok.
They wanted to make sure that I understood that coming out of the surgery after being on so much medication, that I
would come off of it gradually.
I went home just two and half days after the surgery. I felt great the next day and today five weeks later I have no pain,
no medication, I feel fantastic. When they discharged me Dr. Alksne said you are as good as we can get you! I am so
blessed.
How long have you had TN? I went to see my doctor in January of this year, 2006. He put me on some medication,
and after about two weeks I went back to him and said I am still having those same symptoms! He examined me again
and after a while he said do you think we should send you to a specialist? He turned to my husband and asked him.
My husband said yes, because he has seen the pain that I go through. He said I think you have TN, so I am going to
send you to a neurologist.
The specialist said I think your Regular Doctor is on the right track, but I am going to send you for some blood work
and an MRI. Maybe we can find out what is going on after that. In a week you come back and we will discuss what is
going on and what we can do about it. He told me they found out what the trouble was. You have a blood vessel
looping onto the trigeminal nerve, and that it could be fixed! Which made me very happy because I thought I was
going crazy. The last time the pain was just terrible, so he tells me I am going to send you to a neurosurgeon, which
was Dr. Alksne.
Dr. Alksne gave me many different options. My husband and I decided on the surgery. Because I work in the
neurology and the neurosurgery dept. surgery appealed to me more than the concept of medication and its side
affects on your body. Having worked in this department before, I new about all the medications and the side affects.
After coming to this meeting, I feel that I have been blessed. Hearing that some of you have had this pain and
everything for years, even though it comes and then goes away. I had the pain only since last January, and I didn’t
want to have it for years!
I had many trigger points: Air conditioning, putting on make up, a breeze, most anything would set it off. Dr. Alksne
thought from the MRI, that I should have had much more pain than I was having, and I tell you I don’t know how it could
have been worse.
Thank goodness for Dr. Alksne, I think I would have gone crazy if I would have to have this condition for years.
Dr. John Mabilia DDS
When I came to talk to you a number of years ago, I explained all about TN, what it was, how to diagnosis it, the
different treatments and the different medications that was being recommended for treatment.
Today you have more current information than I have on all of the above things mentioned. Once diagnosed, TN
usually strikes the jaw and cheek both, jaw only, cheek only, eye, forehead and check, or all three branches. What
causes the pain to flair up are trigger points?
Trigger pints are such things as: wind, cold, brushing teeth, blowing your nose, a touch, a kiss, bending over or laying
down/getting up. I am sure that some of you probably have other that I have not mentioned.
If there is any way that you can brush your teeth, BRUSH; there are too many consequences of not brushing. We will
go over some alternatives later.
Q. Some people say they can’t use an eclectic toothbrush but they can use the old fashioned kind.
A. There is very little difference between manually brushing your teeth, and using an electric brush. Studies have
shown that if you do a good job manually your teeth are as clean as using the electric brush.
The electric brush is good for some people who have a difficult time using a manual brush.
There is nothing to show that an electric toothbrush will trigger a session of TN over a regular tooth rush.
One of the consequences of TN is gingivitis, where bacteria invades the periodontal tissues, forming pockets of
infection that destroy the periodontal ligament and dissolve away the bone around the tooth. This is called
periodontitis. Flossing removes plaque, which minimizes the chances of developing periodontitis and losing ones teeth
later.
We also know that when your gum becomes infected, and it is not taken care of the bacteria has direct access to the
blood stream. They are now equating periodontitis disease to coronary artery disease. Gingivitis/ periodontitis disease
also affects the bone that holds the teeth. If this is not taken care of, you will lose the tooth, in that there is nothing to
hold it in place.
Dilantin hyperplasia - What happens is the gum is responding to plaque. There will be no problem if you keep your
gums very clean! If you don’t keep your gums clean, the plaque and tarter causes the gums to start receding. If you
start cleaning your gums regularly, the gums will start to go back down to normal.
Now, hyperplasia once it starts to grow it will not go away, the only way to stop the gums from growing is to have
surgery. It will never be the same. If you keep your gums in good shape you will never have this problem.
If you can’t keep your gums clean because of TN there are oral rinses that work great. There is periodontal (or)
periodex (?) and perioguard, and periomed, these are 1.2% chlorhexidine. Peroxide is also very good. Salt water, and
Listerine (10%+ alcohol), also is very good, but it is not the alcohol that kills the bacteria. Most mouthwashes have oils
of different leaves that kill the bacteria. Most of these mouthwashes do not control the bacteria that make up gingivitis;
it kills the bacteria that cause cavities in the teeth.
Dental schools still are not touching TN with any effective knowledge. They may have a one-day lecture.
There is new product on the market to let you know how clean your mouth is or whether you have brushed your teeth
correctly. Agent Blue. You remember the little red pill. Well this is a mouthwash that you do after you have brushed.
It will show up blue on your teeth and gums where you have not cleaned them. For kids it is an excellent product. It
would also help those of you with TN to show where you need to concentrate your cleaning.
Q. How often does a dental procedure cause TN?
A. To my knowledge NEVER! There has never been a documented case of dentistry causing TN. Even when a root
canal has been performed where the dentist drilled too deep. That will not cause TN. (TN) is caused by a blood
vessel rubbing on the trigeminal nerve, eventually rubbing away the Protective myelin sheath.
Q. Why is it that we as humans have more dental problems than animals out in the wild?
A. Life style, diet, and longevity. Also, we know that dinosaurs have had tooth abscesses; many animals have had
tooth rot.
Q. How can you tell if a tooth is infected?
A. Number of ways: X-Ray, hot and cold applied to the tooth. The tooth only has one nerve in it, and it is a pain nerve.
The thing in going to your dentist that you should know is: know your trigger point/s. What brings on the pain? And, at
all costs try to keep extremely good hygiene with your mouth, because there are so many things that can affect you
when you don’t practice good oral hygiene.
One of the reasons I am here to day is because I have some patients who have TN, and it is a real challenge to try to
help these individuals.
Thank you to everyone!!!!!
I want to thank all the people who helped me get to the Conference this year. With the help of the San Diego TN
group, Gamma Knife Center and other members of our group and friends who helped me out so that I could go to the
conference. I will be putting my notes together over the next month and will be speaking in November about what I
have learned. I was very busy going from meeting to meeting and did my talk about Service Dogs.
We now know that it should have said, “Service Dogs for People with TN and other Facial Pains” instead of just
“Service Dogs”. Most people probably thought it was for people who are blind and didn’t realize what I was trying to
share with them. There were about 25 who came to my talk and I got nervous but made it through the whole thing. My
daughter who lives in Portland videotaped me!! Everyone said that I did a great job but my daughter told me that I was
a little nervous when it came to the technical parts. One the personal levels I was calm. I knew that my daughter would
be honest with me.
I was able to get “one on one” time with Dr. Casey and many of the other doctors. Dr. Casey just loves Jake and so
does Dr. Gremillion who is a dentist. I sure wish that he were here in San Diego!!!!
The greatest part of this and all the conferences, the doctors, dentists, and everyone who wants to give their time just
for us, pay their own way. This makes it just like a family. Everyone is so wonderful and every talk was right on time.
I got the message into the San Diego Union Paper. So, if anyone gets that paper, please look it up and bring it to the
next meeting. I would like to see it and it should be in the “Community Section”.
Cherie Sato, San Diego Support Group Leader
Return to Home Page
Recap of September, 2006 Meeting
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