INAUGURAL MEETING OF THE UK TN SUPPORT GROUP,
 MONDAY JUNE 21ST, 1999. ST. BARTHOLOMEW'S HOSPITAL, LONDON

 

 

 

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:

 

 

 

ELISABETH BOULOT

 

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.

 

 

 

DR. JOANNA ZAKRZEWSKA

 

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.

 

DIAGNOSIS

 

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.

 

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.

 

 

MEDICAL TREATMENT

 

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.

 

 

CONCLUSION

 

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.

 

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.

 

 

 

PETER HAMLYN, NEUROSURGEON AT THE ROYAL LONDON HOSPITAL

 

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

 

- 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.

 

 

WHAT IS THE TRIGEMINAL NERVE ?

 

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.

 

 

WHEN IS IT TIME TO MOVE ON TO SURGERY ?

 

- 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.

 

 

SURGERIES

 

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.

 

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)

 

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.

 

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.

 

COMPARING THE DIFFERENT PROCEDURES

 

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.

 

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.

 

 

CONCLUSION

 

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!)

 

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 ?

 

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.

 

 

 

MAGGIE ALEXANDER, FROM THE BRITISH BRAIN AND SPINE FOUNDATION

 

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 0171 793 5900 or email: info@bbsf.org.uk

 

The Brain and Spine help line is FREE, confidential and open:

From 9AM to 1PM weekdays (except Wednesday), from 10AM to 6PM on Wednesday.

 

The number is : 0808 808 1000

 

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.

 

 

 

END OF THE MEETING

 

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.

 

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.

 

 

 

MONEY

 

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.

 

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

 

 

VERY LAST WORD…

 

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!