April 2008 Meeting
Recap of April, 2008 Meeting
We had Dr. Alksne speaking to our group in April. Dr. Alksne thanks everyone who helped at the Regional
Conference. He thought that for a half day symposium that is was a great turn out, we covered a lot of stuff and went
very smoothly.
I want to interject something here. Dr. Alksne talked about the National Conference that will be coming up in September
12th and 13th that will be held at Wayne State University in Detroit which may be the last one. After speaking with Jane
Boles at TNA, this is NOT written in stone at this time. Dr. Alksne also said the same thing.
It will be similar to what we had here in San Diego but will be spread out over a two days instead of one. There will be a
lot more time to convey information and getting the more complex issues perhaps what some people call Atypical Facial
Pain. After speaking with Jane Boles at TNA, this is NOT written in stone at this time. Dr. Alksne also said the same
thing.
There is a chance that there might be National Conferences in the future but just not every two years at this time and
that is not written in stone. The Board is talking and I told Jane that having one every two years was expensive for us
SGL’s especially those of us who are disabled and live on a very limited income.
They are now focusing on the Regional Conferences like we had. There would be four, one in each Region, so that
more TN and facial pain patients would be able to attend and there not be a big expense to us like hotel, long distances
to travel and other expenses that go along with a National Conference.
So, Dr. Alksne said that if by chance this is the last National Conference that it would be good for anyone who can go to
see what it is like and meet others with TN from around the world. It is different than the Regional Conferences.
Dr. Alksne thank any of the 100 people who participated in their study. We have been reviewing a 100 patients who
had a MVD after the Thin Cut MRI and trying to get a value of this type of MRI where there was a vessel found that
needed to be moved. So this shows how well the Thin Cut MRI is for finding that vessel and can see the Trigeminal
nerve. Then you can select who you can recommend to a MVD surgery or another procedure.
We had contacted a lot of people and analyzed the data. I guess that the most important finding was that of the 100
people who had the Thin Cut MRI and then went on to have the MVD surgery all but one had an offending vessel found
in the operating room and that was a patient that had prior surgery so that could be why the MRI was confusing. But
that accentually verifies that if you have a positive vessel seen on the MRI scan you are going to have a positive vessel
found in the operating room.
This means that you erase that 15% risk of going in for surgery or the doctor comes out and tells you that there was not
vessel. Dr. Alksne said that they are very happy with that. It confirms and proves that as a fact when doing the Thin
Cut MRI.
On the other hand what we couldn’t prove, and that was frustrating, that the people with a vessel seen on the MRI Scan
had the vessel found and moved at the time of surgery had any better outcome than the international data outcome on
MVD. So, for years we have been doing MVD’s without knowing if there was going to be a vessel for sure, most people
have one but not everybody.
But when you go out 5 years still the success rate of a MVD still remains between 80 and 85%. Nothing in medicine, or
course is ever 100% but we like it to be that way.
Even those who have had the vessel moved, found and cleaned have some of them had reoccurring pain within 5 years
requiring that something else to be done. So, it takes some of the wind out of the sails per operative MRI scan because
we are sure that we are going to find a vessel we really can’t prove the patients outcomes with the Thin Cut MRI. And
that’s just part of the problem of TN.
It’s still the best outcome that we have which has the lowest outcome rate compared to the other procedures which have
a higher re occurrence rate. Comparing the GKRS to a MVD the MVD has 15% rate of returning 5 years out with and
the GKRS has a 50 to 60% reoccurring rate. Glycerol even higher reoccurring rate. No one has done a good long-term
study on Balloon Compression.
The other interesting thing that we found about Classification of TN, Dr. Alksne tries to divide all patients into two
categories. Classic TN and Non-Classic TN. So, these are people with one sided facial pain electric shocks, it’s Classic
because they have periods of remissions, exacerbations, trigger zones, etc. they are the Classic TN.
The non-classic TN are people who have some component of that but don’t quite fit. They either have constant burning
pain, some of them have super composed electric shocks, some of them have never had a remission, never responded
to the antiepileptic medication. At least all the Classic TN patients responded to the antiepileptic medications.
And so we look at the patients with the Non-Classic TN who had a vessel on the Thin Cut MRI and 50% of them had a
good outcome at 5 years and these are some of the people who doctors would call Atypical Facial Pain. I have had
some people with unbelievable intensive pain where neuro-surgeons tell them that they do not have TN and I will not
touch you. And I have gone in found a vessel impending the nerve, move it and they come out pain free for 5 years.
I don’t like the term, Atypical Facial Pain, because comprises something strange about you and I don’t like to
categorizes you in other groups. There is 85% at 5 years out with Classic TN patients and 50% at 5 years out with
people with Non-Classic TN where other surgeons wouldn’t even touch. And it’s very hard to categorize those patients
with neither. Of course, there are some patients with every condition. There is always a place for physiological place in
pain management for those patients
Most people with one-sided pain, shocks, intermit pain I believe they have something, we may not be able to find it or
understand it but I do not believe that “Atypical” is the proper word. He uses the word “Non-Classic”.
There is the group of people, 50%, who do not have a vessel compressing the nerve and this is where doctors are
puzzled with all the pain that they are in and cannot come up with what is wrong. There is nothing showing up on the
scan but that doesn’t mean that we can operate on them. For these people we just do medication, medication,
medication. Sometimes we do GKRS.
Dr. Alksne went to the Australian Conference last year and there was a very interesting talk there by a neuro-
physiologist from London who caught his attention about the balloon compression. He believes that the advantage
over the GKRS, etc. what he found that people who had the balloon compression do not get the Anesthesia Dolorosa.
His theory is that the Balloon Compression damages the nerve cells in the ganglion which come into the face and that
the nerve cells that come into the ganglion that a Balloon Compression has less chance of causing Anesthesia
Dolorosa.
Since that, Dr. Alksne has increase the use of Balloon Compression with patients with MS and TN because they are
very hard. First of all they do not have a vessel that you can move and they seem to be very resistance to GKRS and if
you keep doing the Radio Surgery they tend to get that Anesthesia Dolorosa pain.
So, we have upgraded the Balloon Compression procedure so now by monitoring the pressure in the Balloon and bring
it up to 1.5 atmospheres and that means about 15 pounds per square inch, like when you inflate a tire, that it does give
profound numbness in the face but it isn’t numbness that bothers people and so that they have to know up front that
you will be numb. We will have to see over time if this can be confirmed and avoids Anesthesia Dolorosa.
But I have had people who have had a Balloon Compression 20 years ago and they are still doing just fine. Balloon is
damaging nerve cells. The balloon last about 5 years and can be repeated. But at that time he wasn’t going to 1.5
atmospheres. He was going by the pressure that the balloon puts out. The Balloon Compression can be done over
and over.
UCSD has a new machine called the Trilogy (a radiation machine) which is some what and up grade from the GK
machine. Gamma Knife is a trade mark and you can’t use that name for another machine but the other reason is that
GK uses Cobalt which is plugged in all the time and the Trilogy machine is an linear accelerator which is an electrical
device that you can turn on and off.
You can focus it just like the GK and they have now done 5 TN patients with this new machine. You don’t have to where
head gear which is pinned to your head. The GK machine was originally built for TN and epilepsy then they found it
was good for cancer patients also.
The Trilogy has 3 advantages. First it puts out a higher output of radiation so that you do not have to hold still as long,
second by a hospital standpoint you buy it, plug it in, turn it on and turn it off as where with the GK the sources decay.
The machine cost $5 Million dollars and in 5 years you have to replace the Cobalt since it has decayed so much and
instead of lying on the table for 45 minutes to treat TN, you would have to lay on the table for an hour and a half
because it just doesn’t have the energy anymore.
Dr. Alksne explained how much trouble it was to change the GK Cobalt parts of the machine and you end up spending
another $3 Million Dollars. So, technology is now trying to improve on this. So the linear accelerator is the standard in
hospitals around the world.
With the GK you can only see the head so if cancer is in any other part of the body there is no way to get to it. For as
the Trilogy it can be used anywhere on the body. Now instead of calling it Gamma Knife we call it “radiostereotactic
surgery.”
In addition to frameless Stereotactic radiosurgery, a Trilogy machine can also deliver other more standard forms of
radiotherapy. “We can finish a radiosurgery treatment for a brain tumor, and then immediately deliver state-of-the-art
image-guided radiotherapy for prostate, lung, breast, and other forms of cancer.
Return to Home Page
We had Dr. Alksne speaking to our group in April. Dr. Alksne thanks everyone who helped at the Regional
Conference. He thought that for a half day symposium that is was a great turn out, we covered a lot of stuff and went
very smoothly.
I want to interject something here. Dr. Alksne talked about the National Conference that will be coming up in September
12th and 13th that will be held at Wayne State University in Detroit which may be the last one. After speaking with Jane
Boles at TNA, this is NOT written in stone at this time. Dr. Alksne also said the same thing.
It will be similar to what we had here in San Diego but will be spread out over a two days instead of one. There will be a
lot more time to convey information and getting the more complex issues perhaps what some people call Atypical Facial
Pain. After speaking with Jane Boles at TNA, this is NOT written in stone at this time. Dr. Alksne also said the same
thing.
There is a chance that there might be National Conferences in the future but just not every two years at this time and
that is not written in stone. The Board is talking and I told Jane that having one every two years was expensive for us
SGL’s especially those of us who are disabled and live on a very limited income.
They are now focusing on the Regional Conferences like we had. There would be four, one in each Region, so that
more TN and facial pain patients would be able to attend and there not be a big expense to us like hotel, long distances
to travel and other expenses that go along with a National Conference.
So, Dr. Alksne said that if by chance this is the last National Conference that it would be good for anyone who can go to
see what it is like and meet others with TN from around the world. It is different than the Regional Conferences.
Dr. Alksne thank any of the 100 people who participated in their study. We have been reviewing a 100 patients who
had a MVD after the Thin Cut MRI and trying to get a value of this type of MRI where there was a vessel found that
needed to be moved. So this shows how well the Thin Cut MRI is for finding that vessel and can see the Trigeminal
nerve. Then you can select who you can recommend to a MVD surgery or another procedure.
We had contacted a lot of people and analyzed the data. I guess that the most important finding was that of the 100
people who had the Thin Cut MRI and then went on to have the MVD surgery all but one had an offending vessel found
in the operating room and that was a patient that had prior surgery so that could be why the MRI was confusing. But
that accentually verifies that if you have a positive vessel seen on the MRI scan you are going to have a positive vessel
found in the operating room.
This means that you erase that 15% risk of going in for surgery or the doctor comes out and tells you that there was not
vessel. Dr. Alksne said that they are very happy with that. It confirms and proves that as a fact when doing the Thin
Cut MRI.
On the other hand what we couldn’t prove, and that was frustrating, that the people with a vessel seen on the MRI Scan
had the vessel found and moved at the time of surgery had any better outcome than the international data outcome on
MVD. So, for years we have been doing MVD’s without knowing if there was going to be a vessel for sure, most people
have one but not everybody.
But when you go out 5 years still the success rate of a MVD still remains between 80 and 85%. Nothing in medicine, or
course is ever 100% but we like it to be that way.
Even those who have had the vessel moved, found and cleaned have some of them had reoccurring pain within 5 years
requiring that something else to be done. So, it takes some of the wind out of the sails per operative MRI scan because
we are sure that we are going to find a vessel we really can’t prove the patients outcomes with the Thin Cut MRI. And
that’s just part of the problem of TN.
It’s still the best outcome that we have which has the lowest outcome rate compared to the other procedures which have
a higher re occurrence rate. Comparing the GKRS to a MVD the MVD has 15% rate of returning 5 years out with and
the GKRS has a 50 to 60% reoccurring rate. Glycerol even higher reoccurring rate. No one has done a good long-term
study on Balloon Compression.
The other interesting thing that we found about Classification of TN, Dr. Alksne tries to divide all patients into two
categories. Classic TN and Non-Classic TN. So, these are people with one sided facial pain electric shocks, it’s Classic
because they have periods of remissions, exacerbations, trigger zones, etc. they are the Classic TN.
The non-classic TN are people who have some component of that but don’t quite fit. They either have constant burning
pain, some of them have super composed electric shocks, some of them have never had a remission, never responded
to the antiepileptic medication. At least all the Classic TN patients responded to the antiepileptic medications.
And so we look at the patients with the Non-Classic TN who had a vessel on the Thin Cut MRI and 50% of them had a
good outcome at 5 years and these are some of the people who doctors would call Atypical Facial Pain. I have had
some people with unbelievable intensive pain where neuro-surgeons tell them that they do not have TN and I will not
touch you. And I have gone in found a vessel impending the nerve, move it and they come out pain free for 5 years.
I don’t like the term, Atypical Facial Pain, because comprises something strange about you and I don’t like to
categorizes you in other groups. There is 85% at 5 years out with Classic TN patients and 50% at 5 years out with
people with Non-Classic TN where other surgeons wouldn’t even touch. And it’s very hard to categorize those patients
with neither. Of course, there are some patients with every condition. There is always a place for physiological place in
pain management for those patients
Most people with one-sided pain, shocks, intermit pain I believe they have something, we may not be able to find it or
understand it but I do not believe that “Atypical” is the proper word. He uses the word “Non-Classic”.
There is the group of people, 50%, who do not have a vessel compressing the nerve and this is where doctors are
puzzled with all the pain that they are in and cannot come up with what is wrong. There is nothing showing up on the
scan but that doesn’t mean that we can operate on them. For these people we just do medication, medication,
medication. Sometimes we do GKRS.
Dr. Alksne went to the Australian Conference last year and there was a very interesting talk there by a neuro-
physiologist from London who caught his attention about the balloon compression. He believes that the advantage
over the GKRS, etc. what he found that people who had the balloon compression do not get the Anesthesia Dolorosa.
His theory is that the Balloon Compression damages the nerve cells in the ganglion which come into the face and that
the nerve cells that come into the ganglion that a Balloon Compression has less chance of causing Anesthesia
Dolorosa.
Since that, Dr. Alksne has increase the use of Balloon Compression with patients with MS and TN because they are
very hard. First of all they do not have a vessel that you can move and they seem to be very resistance to GKRS and if
you keep doing the Radio Surgery they tend to get that Anesthesia Dolorosa pain.
So, we have upgraded the Balloon Compression procedure so now by monitoring the pressure in the Balloon and bring
it up to 1.5 atmospheres and that means about 15 pounds per square inch, like when you inflate a tire, that it does give
profound numbness in the face but it isn’t numbness that bothers people and so that they have to know up front that
you will be numb. We will have to see over time if this can be confirmed and avoids Anesthesia Dolorosa.
But I have had people who have had a Balloon Compression 20 years ago and they are still doing just fine. Balloon is
damaging nerve cells. The balloon last about 5 years and can be repeated. But at that time he wasn’t going to 1.5
atmospheres. He was going by the pressure that the balloon puts out. The Balloon Compression can be done over
and over.
UCSD has a new machine called the Trilogy (a radiation machine) which is some what and up grade from the GK
machine. Gamma Knife is a trade mark and you can’t use that name for another machine but the other reason is that
GK uses Cobalt which is plugged in all the time and the Trilogy machine is an linear accelerator which is an electrical
device that you can turn on and off.
You can focus it just like the GK and they have now done 5 TN patients with this new machine. You don’t have to where
head gear which is pinned to your head. The GK machine was originally built for TN and epilepsy then they found it
was good for cancer patients also.
The Trilogy has 3 advantages. First it puts out a higher output of radiation so that you do not have to hold still as long,
second by a hospital standpoint you buy it, plug it in, turn it on and turn it off as where with the GK the sources decay.
The machine cost $5 Million dollars and in 5 years you have to replace the Cobalt since it has decayed so much and
instead of lying on the table for 45 minutes to treat TN, you would have to lay on the table for an hour and a half
because it just doesn’t have the energy anymore.
Dr. Alksne explained how much trouble it was to change the GK Cobalt parts of the machine and you end up spending
another $3 Million Dollars. So, technology is now trying to improve on this. So the linear accelerator is the standard in
hospitals around the world.
With the GK you can only see the head so if cancer is in any other part of the body there is no way to get to it. For as
the Trilogy it can be used anywhere on the body. Now instead of calling it Gamma Knife we call it “radiostereotactic
surgery.”
In addition to frameless Stereotactic radiosurgery, a Trilogy machine can also deliver other more standard forms of
radiotherapy. “We can finish a radiosurgery treatment for a brain tumor, and then immediately deliver state-of-the-art
image-guided radiotherapy for prostate, lung, breast, and other forms of cancer.
Return to Home Page
 | |  | |  |
“Versatility is at the heart of Varian’s Trilogy® medical linear accelerator,
the world’s first treatment machine designed to deliver all types of
radiotherapy quickly and efficiently. Talk with physicians from any of the
more than 100 treatment centers where Trilogy has been installed, and
inevitably you will hear the words “power” and versatility.” Equipped with
the On-Board Imager® device, Trilogy can be used to deliver
Stereotactic radiosurgery (SRS) and fractionated Stereotactic radiation
therapy as well as 3D conformal radiotherapy, IMRT, and IGRT. No
other radiation therapy technology can match this range. And clinicians
are realizing that competing technologies cost more and do less, forcing
them to choose a treatment approach that is feasible for the machine
rather than one that is best for the patient.”
the world’s first treatment machine designed to deliver all types of
radiotherapy quickly and efficiently. Talk with physicians from any of the
more than 100 treatment centers where Trilogy has been installed, and
inevitably you will hear the words “power” and versatility.” Equipped with
the On-Board Imager® device, Trilogy can be used to deliver
Stereotactic radiosurgery (SRS) and fractionated Stereotactic radiation
therapy as well as 3D conformal radiotherapy, IMRT, and IGRT. No
other radiation therapy technology can match this range. And clinicians
are realizing that competing technologies cost more and do less, forcing
them to choose a treatment approach that is feasible for the machine
rather than one that is best for the patient.”