INAUGURAL
MEETING OF THE UK TN SUPPORT GROUP,
�MONDAY JUNE 21ST, 1999. ST.
BARTHOLOMEW'S HOSPITAL, LONDON
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58 people attended the
meeting from as far as Jersey and Scotland. Many of you came with family or
close friends. There was also a representative from the British Brain and Spine
Foundation, Mrs Ann Conn who has been helping TN patients for years, Julie
Richardson, a nurse running a local TN group in Southampton, and Mr Roger Levy
from the board of the TNAssociation in the States.
We had "decorated"
the room with various articles published in American newspapers, and a
wonderful poster made of poems, art work and pictures that Joanna Zak brought
back from the TNA meeting in Orlando, USA, last November.
We started the talks on
time, and here is a summary of what has been said:
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ELISABETH BOULOT
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I am French, nearly 36, and
a mother of 3 children. I have had TN for about 8 years, and after a long
period of suffering, taking a lot of pills trying all sorts of therapy, I had a
Microvascular Decompression in November 1986 and have been pain free since
then.
I decided to start a group
because I had been struggling during those 8 years in search for information,
and found it very difficult to accept. I have had tremendous help from the
TNAssociation in the United States, and Claire Patterson, the chairperson of
this association, offered her support and help for me to start this group.
We couldn't have been here
today without the help of Dr. Joanna Zakrzewska (Dr. Zak). She offered her
expertise and energy to get this group started.
I am prepared to work hard
for this cause, but I can not do it by myself. A well run business can only
succeed if managed by a group of people who exchange ideas and experiences. I
feel it is the same for an association. I am therefore asking for your help.
You can give money, and some of you already did. More important than money, is
your time. We need to raise awareness, write articles, create local groups, and
support each others. I also need a group of people to run the association with
me.
You are here today because
you think that this group can help you. You are right, but this group needs you
as well.
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DR. JOANNA
ZAKRZEWSKA
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Dr. Zakrzewska is Head of
the Department of Oral Medicine at St. Bartholomew's and the Royal London Hospital.
She wrote a book on TN, and is involved in many research projects on TN. She is
a worldwide known expert on the subject.
Joanna gave us a very clear
speech about the importance of a precise diagnosis of TN, and reviewed some of
the drugs currently used to relieve pain.
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DIAGNOSIS
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It is important to get a
clear diagnosis as there are many types of chronic facial pains. There is also
a clear distinction between classical (or typical) TN from atypical TN.
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Classical TN
- The pain is
usually described as SHARP and SHOOTING.
- The trigger
factor is LIGHT TOUCH: shaving, brushing teeth, hair, washing the face,
speaking, wind blow.
- The intensity
of the pain is paroxysmal, comes and goes. It is important to have the pain
intensity measured.
- The pain is usually located on one side of the face (only 3% of the
sufferers get it on both sides). It commonly affects the jaw area, more rarely
the eye area.
- TN is also characterized by periods of remission or natural relief.
This can last a few days, or a few years. This makes it difficult to measure
the effectiveness of a specific drug.
Atypical TN
- Atypical TN includes all the symptoms and effect of classical TN. In
addition to that, the patient endures a dull, aching and often constant pain.
- There is a theory saying that classical TN turns into an atypical one
after a while, but it has not been scientifically proven.
- Surgery proves to be less effective for atypical TN. Dr. Zak did a
follow up over 3 years on a group of�
patients who had had Radiofrequency Thermocoagulation:� the sharp-shooting pain would disappear, but
the dull pain did persist. Nevertheless, those patients where still pleased
with the outcome of the surgery.
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MEDICAL TREATMENT
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There is a wide
range of anti-convulsant drugs used to relieve the pain, however medicines do
not cure the cause of TN but attempt to relieve the pain. The effectiveness of
a drug varies with each patient, and the side effects can be very unpleasant.
Unfortunately,
very few drugs have been subject to randomised control trials. They are used to
treat TN because they might work.
- CARBAMAZEPINE (or Tegretol) is the "Gold Standard" for TN.
It is the most effective, but can have severe side effects (dizziness, loss of
memory, fatigue�)
- LAMOTRIGINE is
receiving more and more attention. It is not as helpful as Tegretol, but has
less side effects.
- GABAPENTINE is quite a new drug. It has not been used on a randomised
control trial yet, but there is pressure on drug companies to do it. This may
be a drug of value for the future.
- The other drugs reviewed (Phenytoin, Baclofen, Clonazepan, etc.) are
not commonly used, as they prove to be ineffective or have severe side effects.
But they are sometimes used in combination with the other ones.
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CONCLUSION
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During her
speech, Dr. Zak stressed the fact that there is a remarkable lack of high
quality research on TN.
- The cause of TN is not known, although many neurosurgeons think the
pain is caused by blood vessels compressing the trigeminal nerve.
- Research on drugs is limited. Doctors use anticonvulsants because
they relieve the pain, but as TN is still considered a rare disease, drug
companies are not interested in research.
- There is no quantified research on how disabling it is to socialise
for a TN sufferer, even though experts do know that most patients find it very
difficult.
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But there is
hope!
- A survey initiated by the TNAssociation in the United States is on
its way : in November 1998, the TNA asked its 8,000 members to complete a
survey on all aspects of TN. The results are not published yet, but it will be
very useful for all the medical profession interested on TN.
- A group such as ours provides a body for research. It proves that TN
is not as rare as it is considered, it gives us the opportunity to get
attention from the medical profession.
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PETER
HAMLYN, NEUROSURGEON AT THE ROYAL LONDON HOSPITAL
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Mr. Hamlyn
completed his thesis on trigeminal Neuralgia, and spent years of his life doing
research. He told us that today was a great day for him, as the beginning of a
group has been long awaited.
A BRIEF HISTORY OF TN
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- TN is not a new condition, as it was known from ancient Greeks and
Romans. All sorts of treatments have been used in the past. Medical treatment
included belladonna, arsenic, lead, laxatives. Surgical treatment included a
wide range of procedures destroying the nerve to stop the pain.
Fortunately for
us, some progress has been made since then!
- In 1932, an American surgeon published a paper: he clearly stated
that during surgery, he could see that some blood vessels were compressing the
nerve, and pain was relieved when blood vessels were taken away from the nerve.
It was a fantastic observation, as he didn't use any microscope.
- Since then, there are several types of approach to surgery for TN :
One is the
attempt to find a cause and hopefully cure the disease (therapy), and the other
one is to stop the pain (destruction)
- A lot of studies permitted to demonstrate that many neurological
diseases including TN are the result of a pathology called NEUROVASCULAR
COMPRESSION (blood vessel compressing a nerve)
- However, after a study in the early 80's including 5,000 people being
operated by 32 neurosurgeons searching for a compression, the evidence varied.
In short, surgeons could not agree on whether there was a significant blood
pressure on the nerve.
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WHAT IS THE TRIGEMINAL NERVE ?
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The trigeminal
nerve is the 5th cranial nerve. It starts at the bottom part of the skull, goes
in the front along the ear, forms the GANGLION (size of a small tea spoon) and
separates into 3 DIVISIONS: the ophthalmic division (supplies most of the
scalp, upper eyelid, tear gland and cornea), the maxillary division (supplies
the upper jaw), and the mandibular division (supplies the tongue, lower jaw and
jaw muscles). Those divisions then separate into multiple BRANCHES.
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WHEN IS IT TIME TO MOVE ON TO SURGERY ?
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- TN is always treated first with anticonvulsants, and mostly with
Tegretol. When Tegretol is not working or when side effects are intolerable,
the patient can try other medicines. In the vast majority of cases, the pain is
controlled by medication.
- The other
possibility is to take higher dosage, but again, side effects can be
unacceptable.
- There are no relevant studies to define clearly when people should
move on from medication to surgery. Practically, it is either when medications
aren't working anymore, or when side effects become intolerable.
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SURGERIES
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MICROVASCULAR
DECOMPRESSION
This is
considered as a major surgery. An opening is made on the back of the head, just
behind the ear. The skull is then opened with a drill, and a microscope is
brought in for observation. The surgeon carefully removes all blood vessels and
arteries compressing the nerve, and introduce little pads along the nerve to
protect it.
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PERIPHERAL
PROCEDURES
When TN affects
one of the multiple branches, minor surgeries are available. A needle is passed
through the cheek, to reach the area of pain. The surgeon can:
- heat the branch
(Radiofrequency Rhizotomy)
- inject a
substance which gradually destroys the branch (Glycerol injection)
- inject a
substance which will freeze the branch (Cryosurgery)
- compress the
branch with a small balloon (Balloon compression)
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When TN affects
one or more full division of the nerve, the same minor surgeries are available,
but the surgeon will pass the needle through the cheek, through a little hole
in the skull to reach the ganglion, and the procedure will affect the whole
division of the nerve.
Whatever the
procedure damages the nerve, and replaces the pain by numbness. These are
rather simple interventions, and only necessitate a few hours stay at the
hospital.
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We can also add
to that list a fairly new procedure called GAMMA KNIFE. This technique uses
radiation beams targeted with precision. It is obviously very attractive
for� the patient as it is non-invasive,
painless and requires no anaesthesia. But there is no study yet on the long
outcome of this procedure, and very few hospitals carry it.
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COMPARING THE DIFFERENT PROCEDURES
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MVD
- disadvantages:
�major surgery, and therefore
complications may occur, including hearing loss, dizziness or death (less than
1%).
- advantages:
Numbness is very
unusual. The effect of the surgery is longer : after 5 year, 75% of the
patients are still free of pain.
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PERIPHERAL� PROCEDURES
- disadvantages:
It always causes
some numbness, and the degree of numbness is impossible to predict. The
effectiveness on the pain is shorter than with an MVD : the average is 1 to 2
years. Some people will have a relief for a few days, some for 5 or 6 years�
Once again, it is unpredictable.
- advantages:
It nearly always
work with classical TN, and can be repeated. The hospital stay is minimum. Very
few risks : less than 1% get a severe complication.
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CONCLUSION
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It is still very
difficult to decide on one or other surgical procedure because we need more
accurate figures to be able to make the right decision.
There is a common
pattern for treatment advice: neurosurgeons usually recommend an MVD for young
and fit patients, and one of the peripheral procedure for older ones. However,
if an old patient is fit enough, he could certainly have an MVD. (When
I-Elisabeth- was in hospital for my MVD, the patient next to me was 81!)
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The most
important is to be sure to have been given the correct diagnosis : Do I really
have TN, and not any other facial pain?
Once this is
clear, then you can move on :
- Do I have all
procedures available to me? It is important to have the choice.
- Do I have good
advice ?
- Do I have
enough information to be able to compare the efficacy of all treatments ?
- Am I prepared
to deal with all possible side effects ?
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Mr. Hamlyn also
added that patients found it very useful to speak to other sufferers. Many of
us have undergone surgical procedures. Some worked, some didn't. It is
important to speak to both sides.
He finally added
that it is very important for him, as a neurosurgeon, that we keep working
together to give more information on TN.
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MAGGIE
ALEXANDER, FROM THE BRITISH BRAIN AND SPINE FOUNDATION
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I met Maggie a few
weeks ago, thanks to Mr. Hamlyn, and we discovered that the Foundation could
help TN patients. She kindly came to the meeting to talk about the Foundation
help-line.
The British
B&S Foundation is a medical charity specialised in neurological condition
such as headaches, multiple sclerosis, trigeminal neuralgia, back and neck
pain, etc.
They provide
information on neurological disorders. They offer a wide range of booklets
available for free to patients and carers. They help and finance research on
those conditions, and take part in educating GP's.
If you want more
information on the Foundation, you can contact them on or email:
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The Brain and
Spine help line is FREE, confidential and open:
From 9AM to 1PM
weekdays (except Wednesday), from 10AM to 6PM on Wednesday.
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The number is :
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When calling, you
will be helped by a person trained in understanding neurological disorders.
They provide up
to date medical information and support.
They won't give
you medical advice e.g. which operation to have nor arrange referrals or lists
of doctors, but they will discuss treatment options.
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END
OF THE MEETING
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We didn't have
time to split into small groups, and everybody welcome the idea of a coffee
break and free talking. The room was soon bursting with lively conversations,
and Dr. Zak and Mr. Hamlyn stayed on to answer questions. People also signed
themselves up with offers of help for the future. Offers ranged from producing
and printing leaflets, running a support group, passing information to GP's,
organising the Association, etc.
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We also had the
company of Mr. Roger LEVY, from the
Board of the TNAssociation in the United States and a fellow sufferer. He has
been a great asset during the meeting, and also answered all sorts of queries.
I have to say that I greatly appreciated his commitment to my efforts. He took
pictures during the meeting which will be used to increase our publicity.
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MONEY
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My children had
made a "state of the art" box to collect money, and I have to say
that they were thrilled when I came back home:
We collected �
407.00 during the meeting. Many many thanks for your kind generosity!
The cost of the
meeting is covered, and I will use the rest of it for postage and copies
expenses.
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As discussed over
the meeting, the British Brain and Spine Foundation has a very complete booklet
ready to print on facial pain. Some of you consulted a copy of it, and agreed
that it was very informative. Almost half of this booklet is on TN. The British
B&S Foundation is looking for funds to be able to print the booklet and
distribute it free for patients and carers.
I will certainly
send them a donation, as many of you rightly suggested that a good leaflet on
TN was badly needed.
If you want to
contribute to this booklet, you can send your donation� to:
British Brain and
Spine Foundation
Maggie Alexander
- Face Pain Booklet
Free Post
London, SW9 6BR
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VERY
LAST WORD�
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Thank you all for
coming and for all your kind letters of support. Please, let me know if you can
help as we will not be able to set further meetings without your help!