"Care and Share January, 2007
January, 2007 Care and Share Meeting
I want to thank all of the people that have so far written me very nice notes and
have sent money in to cover for stamps, etc. Everyone was thanking me for doing
such a great job but this is a thank you for all the people that do so much for this
San Diego Group. I have lots of help from others. It is greatly appreciated!!!!!!!!!!!
The January meeting was a “care and share” and most of the people there were those who had received
their Newsletter from On Line. I apologize that December’s Newsletter was mailed out so late. The
Holidays did me in, and I hate excuses but I have gotten behind in getting the newsletter out!!!! And
now this one is late!!! It’s been a bad month for me but I won’t get into that mess. I’m just thankful
for the great holidays that I had this past year. I hope that all of you had as pain free days that you
can and for those of you who are pain free…….HRRRYYYYYYY!!!!!!!! Happy New Year!!!
I mentioned to the group that Marlene Brenner will be our secretary since the passing of Kay Holiday.
Can you believe that it will be 2 years ago this February since her passing. I still miss her. Marlene will
be calling to find doctors for talks and sending out the thank you notes to any of the speakers.
I am looking for a list of neurologist, dentist, GP’s from you out there in the San Diego area of whom
you like and would recommend to others. I get asked about Neurologist’s all the time and the only one
that I give them is Dr. Schim who is in Oceanside and Encinitas. I have no clue as for a Dentist but Dr.
Eli was suggested and he is in Encinitas. And what plans you are on, if you know of any doctor at
Kaiser. I am sure you understand what I’m asking for here.
Dr. Eli is now doing dentistry on people with TN and he covered under the Medicare program but not all
insurances. He does this on Fridays and starts at 3PM.
There was a lot of discussion about procedures that people have had done and the one most talked
about was Stereotactic Radio Surgery (Gamma Knife). The question was asked if you were to feel
immediate results from this and since everyone is different I usually tell people 3 months to a year
before you feel that the pain is completely gone. Some how have had the Gamma Knife have had
immediate results, but I have heard it takes some time and you can be numb at the beginning and that
numbness can go away after a while.
Helene had a MVD done a few years ago where the pain was gone for three years then Dr. Alksne did a
Thin Cut MRI and found that she had a compression so Dr. Alksne did a second MVD done. Dr. Alksne
had found that the sponge had moved and Helene never had any kind of head injury or in a car
accident. The second MVD only lasted a couple of months and then Helene had the Gamma Knife done
in December 2006. Helene went to the conference in Portland and learned that when, as she put it,
when there is a mess in there the second MVD won’t work. Helene was very blessed to have some relief
from the beginning with the Gamma Knife and this was for the first five days. Another lady that Helene
had spoken with, her pain was gone within 2-3 months. This proves that everyone is different.
Pam who has not had a procedure yet has tried all the different kinds of medications and a trigger point
injection, Botox and has seen Dr. Alksne who has suggested the Gamma Knife for her. She, like all of
us is a bit nervous and Helene told her not to be nervous. It’s always nice to hear from someone else
who has been there before and is very supportive towards others with their fears.
Pam shared her feelings about the statistics of GK being so low compared with the MVD since Pam has
the TN2, which is where an MVD unfortunately doesn’t work well for that particular group of TN
patients. Pam was told that there was a 50% chance of the GK working for her. This means that they
do not have a compressed Trigeminal Nerve and going through an MVD could be senseless and
expensive. Pam’s husband had mentioned that has been told that she is not a candidate for the MVD
but she didn’t remember hearing that. This is why it is really important to take someone with you
because we who have TN or any type of pain definitely don’t catch on to everything that the doctor says.
With the first eight weeks that you will be numb after having the GK and after that the numbness will go
away. Someone else said that they were not numb at all (Dr. Alksne did her GK) and me I can’t
remember after mine but I don’t believe that I was numb (Dr. Alksne did my GK). So, this shows you
how everyone is very different. The doctors have it down pat how much radiation to use and everyone
has different end results. I believe it was Dorothy H. is still numb from her Gamma Knife but she went
to a different doctor and it was about three years ago that the GK was done.
Susan who has TN1 and TN2 had 2 Gamma Knifes done and the second one was done too soon after
her first GK. It had only been 5 months between the two. Even with having the 2 Gamma Knifes done
she does not have any numbness and wanted to reassure this to Pam. Susan had no regrets to having
the first GK but has regrets from the second one since it damaged the Trigeminal Nerve and left her
with some burning. Susan said that she would do a GK once but never more than once after what she
went through.
Susan had initial relief but it didn’t hold up for very long. Susan is still trying to deal with having TN2
since it is very difficult for the doctors to figure out, but she is learning more and more and I think that
the doctors are learning more and more. You have to learn to deal with it on a whole different level.
Susan and everyone agree that giving the GK a try especially since it’s with Dr. Alksne.
Susan also had an MVD done because they had found a compression on her Trigeminal Nerve and that
helped to relieve some of the other pains that she had going on. She is now left with what is called a
Neuropathy and that is a constant pain. Susan had an infection on a nerve that was caused by a
cracked tooth. The dentist went in a took care of the infection but left her with a damaged nerve. We
hear this a lot when neuralgia starts after having dentistry done.
We all thought that Dr. James Nelson who had a very bad fall a few years ago had retired. Don Gilliland
told us that Dr. Nelson has moved out of California and is practicing in another state. If you go to Dr.
Purcell’s office, there is information in the office. Since the office is down in La Jolla and I’m up here in
Carlsbad I will try to remember to call. There are a lot of people here who went to or at least heard Dr.
Nelson speak at our meetings.
Jean Myers had the GK done first and if it didn’t work then they would do an MVD. Jean’s GK has lasted
for three years now and Don Gilliland’s GK has lasted for eight years.
I did mention that it has now been found that any procedures done for TN1 before having the MVD (and
this is IF you have a artery or vein looping or compressing against the Trigeminal Nerve) and the
percentage of the MVD working goes down. So, when I have a patient that has been told that they do
have the looping/compressed nerve I don’t hesitate to tell them that if they are suggested a MVD to go
ahead and do that first. If you have a compressed nerve the MVD has an 85 to 95% chance of
working. If you go in for the GK first then go in for the MVD your percentage goes down. This also
goes with the GK.
It comes back to everyone is different. I know that I’m repeating myself here but I feel that it’s very
important for everyone to remember that. What works for one doesn’t always work for another for all
procedures.
Dee Kosta who just had a MVD a few weeks ago is doing very well and she was given a choice of GK or
MVD and she is very happy that she chose the MVD. Dee’s husband mentioned that the doctor was
concerned about the hearing nerve and optical nerve since everything is in such tight quarters when he
is doing surgery. Dr. Alksne told Dee that her looped artery was a little difficult and he had to take a
little at a time to untangle it.
Dr. Alksne always has a doctor in with him who uses this machine that beeps to make sure that he is
not close to that nerve and damage it. Then Dee said that they would come in to ask how many fingers
am I holding up and things where very fuzzy but she could tell and they remember that everything is
fuzzy when she’s not wearing her glasses. But everything turned out just great!!!!!
Jean Myers was explaining about the possibility of why people who have to go back and having
procedures redone because some of us are hard cases to take care of and I feel that is very true.
This meeting was very interesting to hear how everyone had something different that happened after
their MVD or GK. Susan and another lady said that they heard this ticking noise in their ear afterwards.
And Helene had double vision and after her GK very thing is fine now and she can drive.
Then we all got into the discussion about Dr. Alksne being on the new with Carol LeBeau and talking
about Trigeminal Neuralgia. Debbie Sweeny was interviewed and had an MVD by Dr. Alksne. Frank
mentioned how he liked how Carol introduced Trigeminal Neuralgia at the “Suicide Disease”.
I remember when I first started with this group no one wanted to mention the “S” word but it’s for real
and still is. Pam has it on VCR and hopefully will be able to be at the next meeting so that everyone can
see it. It’s a short segment but very well done.
Jean Myers mentioned that if you are working and give to the United Way that you can designate that
money to go to TNA in Florida and then National will send it to us here in San Diego.
I believe that I mentioned last month that Gamma Knife is the name of the Machine just like Kleenex is
tissue. I wrote GK throughout this newsletter because it was easier to type out than Stereotactic Radio
Surgery.
I mentioned that I am seeing Dr. Pietrek who spoke in October of last year who has helped me do much
that I was not depressed this last Holiday Season. Someone asked me if it was depression that was
just gone but the biggest thing and the best is that I am off Morphine!!!!!!!!!! Morphine is not for
depression as we all know.
Microscopic vs. Endoscopic MVD
By: Joan Foster, Central Texas TNA-SGL
Ten years ago, I stood in a treatment room with a neurosurgeon to hear his prognosis following his
preliminary exam. Holding a model of the human brain, he indicated where a hole would be cut in the
back of my head to perform surgery on a tiny nerve in the middle of my brain. I was a bit overwhelmed,
but maintained my composure during my visit. As if being a single mother of two children wasn’t hard
enough, my quality of life had mysteriously deteriorated over the course of the previous two years.
After my appointment with the neurosurgeon, I returned to work, put my head down on my desk, and
cried. A decade ago, the Internet had not yet connected Texas with the newly formed Trigeminal
Neuralgia Association in Barnegat, New Jersey. I felt truly alone.
Since that day, I have undergone two surgical vascular decompressions for TN: one with a microscope,
and the other with an endoscope. Therefore I have two different experiences to share: one good and
one bad. My first MVD (with a microscope) was a total failure. After the procedure, the surgeon
informed me that he did not see a vessel compressing the nerve. Furthermore, the surgery degraded
my hearing. However, I do not blame the microscope, as there have been thousands of successful
microscopic MVDs with good results. As a support group leader, I stress to patients the importance of
a neurosurgeon with TN expertise. Don’t depend on a “Preferred Provider” from your HMO list. What
you need is an experienced, reliable “Doctor,” specializing in TN. Ten years ago, there was nobody to
tell me this --- I was on an HMO.
I underwent my second MVD five years later; this time, it was with an endoscope. Although much
controversy exists over microscopic versus Endoscopic brain surgery, my personal experience was very
good. Recovery time was less than half of that required for the first MVD, and the procedure relieved
85-90% of my pain. Three years have since passed. I have residual Type-II TN in my first division,
which is the hardest to eradicate. I control it with a low dose of medication and good vitamin
supplements. I’m doing well.
Jonathan White, MD, Assistant Professor of Neurological Surgery at Southwestern Medical School in
Dallas, Texas, made possible my third and most memorable experience with MVD. Shelly Wilson, the
Dallas TNA-SGL, and I were given the rare opportunity to observe (firsthand!) while Dr. White
performed an MVD on a TN patient. Dr. White wanted to demonstrate the difference between the
microscopic and Endoscopic techniques in TN surgery. From the first incision to the last stitch, the entire
procedure took about 2 ½ hours.
The patient was already prepped before we entered the operating room. After reviewing the thin cut
MRI, Dr. White and his team began by positioning equipment around the patient. The scrub nurse, who
kept sterile, positioned herself high over the patient to hand instruments to the doctors. A secondary
nurse freely moved about the room, performing duties that required contact with non-sterile items,
such as positioning stools under the doctors, moving tables, etc. Dr. White had Chief Resident Dr. Tom
Psarros assist him patient throughout the procedure. Two anesthesiologists stood behind a drape,
constantly monitoring respiration and vital signs. A third computer medical technologist monitored the
hearing and facial nerves. Shelly and I were free to walk around the OR to observe and learn.
Dr. White remained stationary, working in a small confined area. The instruments, the smells, and even
the sound of the drill reminded me very much of my husband, Dr. Michael Foster, DDS, working on his
dental patients. I watched intently through a second pair of microscope optics as Dr. White confidently
manipulated the delicate vessels away from the trigeminal nerve and cushioned it with Merocel. He
inserted the endoscope so that we could visually compare it to the microscope. The microscope, which
most neurosurgeons consider state of the art, was definitely more vivid in color and depth perception.
The endoscope seemed very rigid, as it was a hand-manipulated instrument. Unlike the microscope, the
endoscope had the ability to view different angles around the nerve, however with limited depth
perception. The microscope was viewed through lenses, while the endoscope was viewed on a large
monitor.
My goal is not to exclusively promote either instrument. The decision between microscopic vs.
Endoscopic MVD belongs entirely to the patient. Instead, I wish to impress upon my fellow TN patients
that the most important thing is to choose a doctor with experience and a solid track record with follow-
up. Being a TN patient myself and listening to so many stories of TN experiences, my conclusion is
this: I want my neurosurgeon to be confident in his/her abilities, well-trained, and have the best
technology available to perform effective surgery ONE time. Statistics will tell you that following an MVD,
the pain often returns; in repeat surgery, doctors will look for missed vessels. In today’s high-
technology dental field, there are many tiny intra-oral cameras available; some are small enough to even
look at the gum tissue underneath a tooth. If a patient undergoes a traditional MVD, why not use every
avenue of technology to take a second look around and ensure nothing is inadvertently overlooked?
When a patient visits our dental office, we use a x-rays, intra-oral camera, digital camera, laser
technology, and 350X magnification -- basically, we employ everything we have at our disposal to get
the best look at our patients. When a neurosurgeon is in the middle of the brain, why not employ all
the technology at his disposal (i.e. both a microscope and an endoscope) for the best possible and
most-thorough look around? One “hidden” blood vessel could make the difference.
Additionally, Dr. White worked 100% on the patient. He was not performing surgeries on multiple
patients simultaneously. I was very impressed with Dr. White’s post-op also. He does not abruptly
remove the patient from medications, but weans them off carefully. During the MVD, he often performs
a partial rhizotomy depending on what division of the face the pain was located, to assure that the
patient wakes-up pain-free. My sincere thanks to Dr. Jonathan White for allowing Shelly and I to
observe him in action. Dr. White can be reached at (214) 648-8500.
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I said at the meeting that I would put in the Classifications of TN 1, etc. I made an error in stating what
TN 2 is. I have to look through all the papers from the Conference to see if there are other
Classifications or not. This one is by Dr. White at the University of Texas. I have heard and seen
others that want to say TN1 through TN7. So, there seems to still be some confusion here.
The doctors all seem to agree that what use to be called Classic TN and Non-Classic TN now to be TN1
and TN2.
Classification Scheme for Facial pains commonly used in neurosurgical Practice
Trigeminal Neuralgia Type 1 -
Greater than 50% is episodic pain
Trigeminal Neuralgia Type 2 -
Greater than 50% is constant pain
The above is Diagnosis with spontaneous onset.
Trigeminal Injury ————
Trigeminal Neuropathic Pain -
Unintentional, incidental pain
Trigeminal differentiation pain -
Intentional differentiation
Symptomatic Trigeminal Neuralgia -
Multiple Sclerosis (MS)
Post-Herpetic Neuralgia -
Trigeminal Herpes/ Zoster outbreak
Atypical Facial Pain -
Somatoform pain disorder
All the above came from the conference booklet that we received.
Return to Home Page
I want to thank all of the people that have so far written me very nice notes and
have sent money in to cover for stamps, etc. Everyone was thanking me for doing
such a great job but this is a thank you for all the people that do so much for this
San Diego Group. I have lots of help from others. It is greatly appreciated!!!!!!!!!!!
The January meeting was a “care and share” and most of the people there were those who had received
their Newsletter from On Line. I apologize that December’s Newsletter was mailed out so late. The
Holidays did me in, and I hate excuses but I have gotten behind in getting the newsletter out!!!! And
now this one is late!!! It’s been a bad month for me but I won’t get into that mess. I’m just thankful
for the great holidays that I had this past year. I hope that all of you had as pain free days that you
can and for those of you who are pain free…….HRRRYYYYYYY!!!!!!!! Happy New Year!!!
I mentioned to the group that Marlene Brenner will be our secretary since the passing of Kay Holiday.
Can you believe that it will be 2 years ago this February since her passing. I still miss her. Marlene will
be calling to find doctors for talks and sending out the thank you notes to any of the speakers.
I am looking for a list of neurologist, dentist, GP’s from you out there in the San Diego area of whom
you like and would recommend to others. I get asked about Neurologist’s all the time and the only one
that I give them is Dr. Schim who is in Oceanside and Encinitas. I have no clue as for a Dentist but Dr.
Eli was suggested and he is in Encinitas. And what plans you are on, if you know of any doctor at
Kaiser. I am sure you understand what I’m asking for here.
Dr. Eli is now doing dentistry on people with TN and he covered under the Medicare program but not all
insurances. He does this on Fridays and starts at 3PM.
There was a lot of discussion about procedures that people have had done and the one most talked
about was Stereotactic Radio Surgery (Gamma Knife). The question was asked if you were to feel
immediate results from this and since everyone is different I usually tell people 3 months to a year
before you feel that the pain is completely gone. Some how have had the Gamma Knife have had
immediate results, but I have heard it takes some time and you can be numb at the beginning and that
numbness can go away after a while.
Helene had a MVD done a few years ago where the pain was gone for three years then Dr. Alksne did a
Thin Cut MRI and found that she had a compression so Dr. Alksne did a second MVD done. Dr. Alksne
had found that the sponge had moved and Helene never had any kind of head injury or in a car
accident. The second MVD only lasted a couple of months and then Helene had the Gamma Knife done
in December 2006. Helene went to the conference in Portland and learned that when, as she put it,
when there is a mess in there the second MVD won’t work. Helene was very blessed to have some relief
from the beginning with the Gamma Knife and this was for the first five days. Another lady that Helene
had spoken with, her pain was gone within 2-3 months. This proves that everyone is different.
Pam who has not had a procedure yet has tried all the different kinds of medications and a trigger point
injection, Botox and has seen Dr. Alksne who has suggested the Gamma Knife for her. She, like all of
us is a bit nervous and Helene told her not to be nervous. It’s always nice to hear from someone else
who has been there before and is very supportive towards others with their fears.
Pam shared her feelings about the statistics of GK being so low compared with the MVD since Pam has
the TN2, which is where an MVD unfortunately doesn’t work well for that particular group of TN
patients. Pam was told that there was a 50% chance of the GK working for her. This means that they
do not have a compressed Trigeminal Nerve and going through an MVD could be senseless and
expensive. Pam’s husband had mentioned that has been told that she is not a candidate for the MVD
but she didn’t remember hearing that. This is why it is really important to take someone with you
because we who have TN or any type of pain definitely don’t catch on to everything that the doctor says.
With the first eight weeks that you will be numb after having the GK and after that the numbness will go
away. Someone else said that they were not numb at all (Dr. Alksne did her GK) and me I can’t
remember after mine but I don’t believe that I was numb (Dr. Alksne did my GK). So, this shows you
how everyone is very different. The doctors have it down pat how much radiation to use and everyone
has different end results. I believe it was Dorothy H. is still numb from her Gamma Knife but she went
to a different doctor and it was about three years ago that the GK was done.
Susan who has TN1 and TN2 had 2 Gamma Knifes done and the second one was done too soon after
her first GK. It had only been 5 months between the two. Even with having the 2 Gamma Knifes done
she does not have any numbness and wanted to reassure this to Pam. Susan had no regrets to having
the first GK but has regrets from the second one since it damaged the Trigeminal Nerve and left her
with some burning. Susan said that she would do a GK once but never more than once after what she
went through.
Susan had initial relief but it didn’t hold up for very long. Susan is still trying to deal with having TN2
since it is very difficult for the doctors to figure out, but she is learning more and more and I think that
the doctors are learning more and more. You have to learn to deal with it on a whole different level.
Susan and everyone agree that giving the GK a try especially since it’s with Dr. Alksne.
Susan also had an MVD done because they had found a compression on her Trigeminal Nerve and that
helped to relieve some of the other pains that she had going on. She is now left with what is called a
Neuropathy and that is a constant pain. Susan had an infection on a nerve that was caused by a
cracked tooth. The dentist went in a took care of the infection but left her with a damaged nerve. We
hear this a lot when neuralgia starts after having dentistry done.
We all thought that Dr. James Nelson who had a very bad fall a few years ago had retired. Don Gilliland
told us that Dr. Nelson has moved out of California and is practicing in another state. If you go to Dr.
Purcell’s office, there is information in the office. Since the office is down in La Jolla and I’m up here in
Carlsbad I will try to remember to call. There are a lot of people here who went to or at least heard Dr.
Nelson speak at our meetings.
Jean Myers had the GK done first and if it didn’t work then they would do an MVD. Jean’s GK has lasted
for three years now and Don Gilliland’s GK has lasted for eight years.
I did mention that it has now been found that any procedures done for TN1 before having the MVD (and
this is IF you have a artery or vein looping or compressing against the Trigeminal Nerve) and the
percentage of the MVD working goes down. So, when I have a patient that has been told that they do
have the looping/compressed nerve I don’t hesitate to tell them that if they are suggested a MVD to go
ahead and do that first. If you have a compressed nerve the MVD has an 85 to 95% chance of
working. If you go in for the GK first then go in for the MVD your percentage goes down. This also
goes with the GK.
It comes back to everyone is different. I know that I’m repeating myself here but I feel that it’s very
important for everyone to remember that. What works for one doesn’t always work for another for all
procedures.
Dee Kosta who just had a MVD a few weeks ago is doing very well and she was given a choice of GK or
MVD and she is very happy that she chose the MVD. Dee’s husband mentioned that the doctor was
concerned about the hearing nerve and optical nerve since everything is in such tight quarters when he
is doing surgery. Dr. Alksne told Dee that her looped artery was a little difficult and he had to take a
little at a time to untangle it.
Dr. Alksne always has a doctor in with him who uses this machine that beeps to make sure that he is
not close to that nerve and damage it. Then Dee said that they would come in to ask how many fingers
am I holding up and things where very fuzzy but she could tell and they remember that everything is
fuzzy when she’s not wearing her glasses. But everything turned out just great!!!!!
Jean Myers was explaining about the possibility of why people who have to go back and having
procedures redone because some of us are hard cases to take care of and I feel that is very true.
This meeting was very interesting to hear how everyone had something different that happened after
their MVD or GK. Susan and another lady said that they heard this ticking noise in their ear afterwards.
And Helene had double vision and after her GK very thing is fine now and she can drive.
Then we all got into the discussion about Dr. Alksne being on the new with Carol LeBeau and talking
about Trigeminal Neuralgia. Debbie Sweeny was interviewed and had an MVD by Dr. Alksne. Frank
mentioned how he liked how Carol introduced Trigeminal Neuralgia at the “Suicide Disease”.
I remember when I first started with this group no one wanted to mention the “S” word but it’s for real
and still is. Pam has it on VCR and hopefully will be able to be at the next meeting so that everyone can
see it. It’s a short segment but very well done.
Jean Myers mentioned that if you are working and give to the United Way that you can designate that
money to go to TNA in Florida and then National will send it to us here in San Diego.
I believe that I mentioned last month that Gamma Knife is the name of the Machine just like Kleenex is
tissue. I wrote GK throughout this newsletter because it was easier to type out than Stereotactic Radio
Surgery.
I mentioned that I am seeing Dr. Pietrek who spoke in October of last year who has helped me do much
that I was not depressed this last Holiday Season. Someone asked me if it was depression that was
just gone but the biggest thing and the best is that I am off Morphine!!!!!!!!!! Morphine is not for
depression as we all know.
Microscopic vs. Endoscopic MVD
By: Joan Foster, Central Texas TNA-SGL
Ten years ago, I stood in a treatment room with a neurosurgeon to hear his prognosis following his
preliminary exam. Holding a model of the human brain, he indicated where a hole would be cut in the
back of my head to perform surgery on a tiny nerve in the middle of my brain. I was a bit overwhelmed,
but maintained my composure during my visit. As if being a single mother of two children wasn’t hard
enough, my quality of life had mysteriously deteriorated over the course of the previous two years.
After my appointment with the neurosurgeon, I returned to work, put my head down on my desk, and
cried. A decade ago, the Internet had not yet connected Texas with the newly formed Trigeminal
Neuralgia Association in Barnegat, New Jersey. I felt truly alone.
Since that day, I have undergone two surgical vascular decompressions for TN: one with a microscope,
and the other with an endoscope. Therefore I have two different experiences to share: one good and
one bad. My first MVD (with a microscope) was a total failure. After the procedure, the surgeon
informed me that he did not see a vessel compressing the nerve. Furthermore, the surgery degraded
my hearing. However, I do not blame the microscope, as there have been thousands of successful
microscopic MVDs with good results. As a support group leader, I stress to patients the importance of
a neurosurgeon with TN expertise. Don’t depend on a “Preferred Provider” from your HMO list. What
you need is an experienced, reliable “Doctor,” specializing in TN. Ten years ago, there was nobody to
tell me this --- I was on an HMO.
I underwent my second MVD five years later; this time, it was with an endoscope. Although much
controversy exists over microscopic versus Endoscopic brain surgery, my personal experience was very
good. Recovery time was less than half of that required for the first MVD, and the procedure relieved
85-90% of my pain. Three years have since passed. I have residual Type-II TN in my first division,
which is the hardest to eradicate. I control it with a low dose of medication and good vitamin
supplements. I’m doing well.
Jonathan White, MD, Assistant Professor of Neurological Surgery at Southwestern Medical School in
Dallas, Texas, made possible my third and most memorable experience with MVD. Shelly Wilson, the
Dallas TNA-SGL, and I were given the rare opportunity to observe (firsthand!) while Dr. White
performed an MVD on a TN patient. Dr. White wanted to demonstrate the difference between the
microscopic and Endoscopic techniques in TN surgery. From the first incision to the last stitch, the entire
procedure took about 2 ½ hours.
The patient was already prepped before we entered the operating room. After reviewing the thin cut
MRI, Dr. White and his team began by positioning equipment around the patient. The scrub nurse, who
kept sterile, positioned herself high over the patient to hand instruments to the doctors. A secondary
nurse freely moved about the room, performing duties that required contact with non-sterile items,
such as positioning stools under the doctors, moving tables, etc. Dr. White had Chief Resident Dr. Tom
Psarros assist him patient throughout the procedure. Two anesthesiologists stood behind a drape,
constantly monitoring respiration and vital signs. A third computer medical technologist monitored the
hearing and facial nerves. Shelly and I were free to walk around the OR to observe and learn.
Dr. White remained stationary, working in a small confined area. The instruments, the smells, and even
the sound of the drill reminded me very much of my husband, Dr. Michael Foster, DDS, working on his
dental patients. I watched intently through a second pair of microscope optics as Dr. White confidently
manipulated the delicate vessels away from the trigeminal nerve and cushioned it with Merocel. He
inserted the endoscope so that we could visually compare it to the microscope. The microscope, which
most neurosurgeons consider state of the art, was definitely more vivid in color and depth perception.
The endoscope seemed very rigid, as it was a hand-manipulated instrument. Unlike the microscope, the
endoscope had the ability to view different angles around the nerve, however with limited depth
perception. The microscope was viewed through lenses, while the endoscope was viewed on a large
monitor.
My goal is not to exclusively promote either instrument. The decision between microscopic vs.
Endoscopic MVD belongs entirely to the patient. Instead, I wish to impress upon my fellow TN patients
that the most important thing is to choose a doctor with experience and a solid track record with follow-
up. Being a TN patient myself and listening to so many stories of TN experiences, my conclusion is
this: I want my neurosurgeon to be confident in his/her abilities, well-trained, and have the best
technology available to perform effective surgery ONE time. Statistics will tell you that following an MVD,
the pain often returns; in repeat surgery, doctors will look for missed vessels. In today’s high-
technology dental field, there are many tiny intra-oral cameras available; some are small enough to even
look at the gum tissue underneath a tooth. If a patient undergoes a traditional MVD, why not use every
avenue of technology to take a second look around and ensure nothing is inadvertently overlooked?
When a patient visits our dental office, we use a x-rays, intra-oral camera, digital camera, laser
technology, and 350X magnification -- basically, we employ everything we have at our disposal to get
the best look at our patients. When a neurosurgeon is in the middle of the brain, why not employ all
the technology at his disposal (i.e. both a microscope and an endoscope) for the best possible and
most-thorough look around? One “hidden” blood vessel could make the difference.
Additionally, Dr. White worked 100% on the patient. He was not performing surgeries on multiple
patients simultaneously. I was very impressed with Dr. White’s post-op also. He does not abruptly
remove the patient from medications, but weans them off carefully. During the MVD, he often performs
a partial rhizotomy depending on what division of the face the pain was located, to assure that the
patient wakes-up pain-free. My sincere thanks to Dr. Jonathan White for allowing Shelly and I to
observe him in action. Dr. White can be reached at (214) 648-8500.
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I said at the meeting that I would put in the Classifications of TN 1, etc. I made an error in stating what
TN 2 is. I have to look through all the papers from the Conference to see if there are other
Classifications or not. This one is by Dr. White at the University of Texas. I have heard and seen
others that want to say TN1 through TN7. So, there seems to still be some confusion here.
The doctors all seem to agree that what use to be called Classic TN and Non-Classic TN now to be TN1
and TN2.
Classification Scheme for Facial pains commonly used in neurosurgical Practice
Trigeminal Neuralgia Type 1 -
Greater than 50% is episodic pain
Trigeminal Neuralgia Type 2 -
Greater than 50% is constant pain
The above is Diagnosis with spontaneous onset.
Trigeminal Injury ————
Trigeminal Neuropathic Pain -
Unintentional, incidental pain
Trigeminal differentiation pain -
Intentional differentiation
Symptomatic Trigeminal Neuralgia -
Multiple Sclerosis (MS)
Post-Herpetic Neuralgia -
Trigeminal Herpes/ Zoster outbreak
Atypical Facial Pain -
Somatoform pain disorder
All the above came from the conference booklet that we received.
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