Trigeminal Neuralgia Association Australia Page 1

Trigeminal Neuralgia Association

Australia Incorporated. ABN 33 914 644 101 ________________________________________

Making A Difference OUR MISSION: To advocate for the awareness of Trigeminal Neuralgia and related facial pain.

OUR GOAL: To have a unified understanding of Trigeminal Neuralgia and other related facial pain

resulting in better pain management.

OUR VISION: An improved Quality Of Life.

SEPTEMBER 2012

“How many times in my life did I feel like giving up, but I’m staying strong, there ain’t no stopping me; ain’t no stopping me this time,... ain’t no stopping me...”~ 'No Stopping Me' track from the Swisse Olympic Games.

CAN YOU HELP? A couple of support group leaders have

expressed their wish to step down from their

current duties come the end of the year. We are

in the process of seeking suitable replacements.

If you believe your support group is worth

having, and that the support within the group is

essential to TN sufferers, then please step

forward or have a chat with your current SGL to

see what this role entails; then contact me ~

Irene.

HELP WANTED: someone to produce our monthly newsletters. If you would like to give it a go please contact me.

HAVE YOU ANY FUNDRAISING IDEAS? We would love to hear from you. Or if you have a fund raising event that you wish to organise, please call me to discuss

how we can get it off the ground. ~ Irene.

Trigeminal Neuralgia Association Australia Page 2

Repeat operations in failed microvascular decompression for trigeminal neuralgia. by D Y Cho, C G Chang, Y C Wang, F H Wang, C C Shen, D Y Yang Neurosurgery (1994) Volume: 35, Issue: 4, Pages: 665-669; discussion 669-670

PubMed: 7808609

Abstract

For the study of pathogenesis and treatment of recurrent trigeminal neuralgia, we performed 31 repeat operations from

among 400 patients with trigeminal neuralgia in the past 10 years. Initially, of these 400 patients, 376 underwent

microvascular decompression only, and 24 underwent partial sensory rhizotomy with or without microvascular

decompression.

Fifty-three patients (14%) had recurrences after microvascular decompression, of which 31 patients underwent repeat

operations. Among the repeat operations, there was negative exploration in 16 patients (52%), arterial loop compression

in 7 (22%), venous compression in 4 (13%), and Teflon compression or adhesion in 4 (13%). Twenty-one patients had

early recurrences within 1 year, and 10 patients had late recurrences. Negative exploration and arterial compression

were more likely in early recurrence (P = 0.01).

Continuing demyelination might occur in patients with negative exploration, even when adequate decompression had

been initially performed. Seventy percent of the patients had no recurring pain by way of partial sensory rhizotomy for

negative explorations, redecompression of arterial loops, division of offending veins, or lysis and reposition of Teflon.

About half of the patients had positive findings that were amenable without rhizotomy in the repeat operations. A

repeat operation for failed microvascular decompression is a good choice if the condition of the patient is tolerant.

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Findings and long-term results of subsequent operations after failed microvascular

decompression for trigeminal neuralgia. by Thomas Günther, Venelin M Gerganov, Lennart Stieglitz, Wolf Ludemann, Amir Samii, Madjid Samii Neurosurgery (2009) Volume: 65, Issue: 3, Pages: 933-938; discussion 938-940

PubMed: 8905748

Abstract

OBJECTIVE: Multiple studies have proved that microvascular decompression (MVD) is the treatment of choice in cases

of medically refractory trigeminal neuralgia (TN). In the elderly, however, the surgical risks related to MVD are

assumed to be unacceptably high and various alternative therapies have been proposed. We evaluated the outcomes of

MVD in patients aged older than 65 years of age and compared them with the outcomes in a matched group of younger

patients. The focus was on procedure-related morbidity rate and long-term outcome.

METHODS: This was a retrospective study of 112 patients with TN operated on consecutively over 22 years. The main

outcome measures were immediate and long-term postoperative pain relief and neurological status, especially function

of trigeminal, facial, and cochlear nerves, as well as surgical complications. A questionnaire was used to assess long-

term outcome: pain relief, duration of a pain-free period, need for pain medications, time to recurrence, pain severity,

and need for additional treatment.

RESULTS: The mean age was 70.35 years. The second and third branches of the trigeminal nerve were most frequently

affected (37.3%). The mean follow-up period was 90 months (range, 48-295 months). Seventy-five percent of the patients

were completely pain free, 11% were never pain free, and 14% experienced recurrences. No statistically significant

differences existed in the outcome between the younger and older patient groups. Postoperative morbidity included

trigeminal hypesthesia in 6.25%, hypacusis in 5.4%, and complete hearing loss, vertigo, and partial facial nerve palsy in

0.89% each. Cerebrospinal fluid leak and meningitis occurred in 1 patient each. There were no mortalities in both

groups.

CONCLUSION: MVD for TN is a safe procedure even in the elderly. The risk of serious morbidity or mortality is similar

to that in younger patients. Furthermore, no significant differences in short- and long-term outcome were found. Thus,

MVD is the treatment of choice in patients with medically refractory TN, unless their general condition prohibits it.

Trigeminal Neuralgia Association Australia Page 3

Neurocirugia (Astur). 2004 Aug;15(4):345-52.

Management of recurrent trigeminal neuralgia after failed microvascular

decompression Fernández-Carballal C, García-Salazar F, Pérez-Calvo J, García-Leal R, Gutiérrez FA, Carrillo R.

Source: Servicio de Neurocirugía, Hospital General Universitario Gregorio Marañón, Madrid.

Abstract

OBJECTIVE:

To evaluate the surgical management of patients with trigeminal neuralgia after failed microvascular decompression.

PATIENTS AND METHODS:

Between 1993 and 2002, exploration of the posterior fossa was performed in 60 patients with trigeminal neuralgia.

Records were analyzed retrospectively for those patients who needed another surgical procedure due to recurrence of

pain, describing which procedure was performed, postoperative results and complications, and also the intraoperative

findings when posterior fossa reexploration was realized.

RESULTS:

Eighteen patients had trigeminal neuralgia recurrence requiring a new surgical intervention, that consisted in a fossa

posterior re-exploration in nine patients and percutaneous radiofrequency thermal rhizotomy in the other nine patients.

Among the repeat operations, there was negative exploration in 7 patients (77%), and a partial sensory rhizotomy was

performed. Most of thermocoagulations (5/9) were performed in old patients or patients with anestesic contraindication

for the fossa posterior reexploration.

CONCLUSION:

Fossa posterior re-exploration is an effective and safe surgical attitude in the treatment of recurrent trigeminal neuralgia

after failed microvascular decompression. Partial sensory rhizotomy is recommended when the reexploration is

negative.

DISCLAIMER

The information provided in this Newsletter is of a general nature only and is not intended to replace medical advice.

Any views of a medical or therapeutic nature expressed are the views and opinions of the author and are not necessarily

the views of Trigeminal Neuralgia Association Australia.

Before considering or undertaking any medical or therapeutic treatment described please seek advice from a Qualified

Medical Professional.

Trigeminal Neuralgia Association Australia does not accept liability for any adverse consequences that may arise from

following any treatment or advice described in this Newsletter.

This Newsletter remains the property of Trigeminal Neuralgia Association Australia. No part of this Newsletter may be

copied without the express written permission of the Trigeminal Neuralgia Association Australia. ©

Trigeminal Neuralgia Association Australia Page 4

SUPPORT GROUP MEETING REPORTS

SYDNEY CBD SUPPORT GROUP St James Parish Hall

4th August 2012

Attendees: Reg W & Lois W; C V Madhu; Alan M & Margaret M, Ingrid K; Ieuen R; Kim K; Fran T; Irene W

Apologies: Fae M, Allaster McD.

Allaster wrote: Another apology I’m afraid. My wife is currently going through a period of anxiety attacks, which is

most unusual for her. My absence at any distance doesn’t help of course, so we will have to wait and see. Meanwhile I

am trying to reduce my dosage of Vimpat at Dr Aggarwals’s suggestion, because of continued lack of balance. Have cut

out Clonazepam entirely too. The plan was to reduce the Vimpat by 25mg for 2 weeks at a time but so far I’ve only

managed the first reduction – and that’s border line. This stage is 75 AM & 100mg PM + Cymbalta 30mg in the morning.

Anyway I shall keep in touch and let you know of any changes.

Fae: My apologies for the meeting today. I am finding with my husband's recovery from the major operation for cancer

of the bowel that my time just isn't always available. It is a long hard road for him and so for me. I am having some

success with a physiotherapist re neuralgia.

We were all pleased to see Lois and Reg again. Reg and Lois travel from Wyong and the journey to the city takes about

90 minutes... depending on how heavy his foot gets. Irene commented that it only takes her 75 minutes (breaking all

speed limits) to get to the city.

Members Update:

Alan reports that he is going quite well. He sometimes get a very little jolt – just to remind him “it” is still there, but he

can live with that. He has an appointment to see Prof. Cousins to review his medications. Currently he is taking 200mg

Tegretol X AM/ PM’ Lyrica 300mg X AM /PM and 60 mg Cymbalta once a day. Allan said that since his fall off the

ladder where he banged his head on the ground, his pain level has been pretty much under control. Alan thinks the

bang on the head did the trick.

Although we all laughed, we strongly don’t recommend that as a treatment. We quip that Professor Devor would say

“see! I told you so.”

Ingrid said that she has been really well. She hasn’t had any severe stabbing since June last year. However, 3 weeks ago

after dental – she had a little jolt. This has all now settled. After the dental visit, when she had the little jolt, she

increased the Tegretol to 300mg X AM/ PM. She is now taking Tegretol 300mg in the morning and 200mg at night;

Lyrica 150mg X AM / PM. She said that since she reduced her Lyrica by 150mg, both her ankles have stopped aching.

C.V Madhu gave us an update on his wife (Nagu)’s TN. She is presently taking only 25mg of Endep; once at night.

She doesn’t have big shots, but lots of little stabs. From her thin cut MRI, Dr Dexter said that she is a good candidate for

a second MVD. C.V said that his wife was a little disappointed as she was all ready to have her second MVD, but the

doctor had advised to trial Tegretol first, and to come back in November.

Fran also said that everything is fine with her. She is taking a maintenance dose of 100mg of Tegretol per day.

We discussed the value of 100mg of Tegretol... but agreed that it is very much an individual thing. If you feel more

confident having 100mg of Tegretol in you... it beats sitting around worrying if and when it will hit.

Lois – finally had her MVD at RNSH on the 6th of June after 2 false starts. She felt good after the operation, and tapered

off her medication over a 3 weeks period. Then Thursday 6’Oclock, while in bed – it hit. She immediately resumed

Tegretol CR 200mg X AM/PM. On occasion it is worse on V1. She still gets spikes, in all the V1, V2 and V3. She has

been back to see her surgeon, who had offered to “burn the nerve.” Spikes she gets now are between 10 – 30 a day, and

level of pain is 3 /10. At the moment, she is happy if it stays as it is. Asked how long she stayed in hospital after the

MVD , Lois replied 4 days.

Lois recounted that while she was in hospital, they gave sodium tablets 2 tablets X 3times a day. They said her sodium

level and BP was low. She advised NOT to put the salt tablet into your mouth before you have the water ready.

Trigeminal Neuralgia Association Australia Page 5

KimK - no pain, and has been able to reduce her Tegretol from 800mg to 500mg – that is 200mg AM and 300mg PM.

It’s great to see that everyone is managing their TN well. We then discussed a bit on the “lyme” disease which doesn’t

exist in Australia. Margaret related that her niece had to send her sample over to the US to be confirmed as Lyme

disease; and treatment was a series of antibiotics.

We took a quick vote not to have a meeting in October, but to hold one in November with guest speaker Professor

Phyllis Butow. This meeting is open to all members and we hope folks from Toongabbie will take the opportunity to join

us.

On the subject of folks coming to meetings, we commented that folks tend to come along only when they need help, but

don’t come back to return the favour. It is always the usual loyal core of people who attends each meeting.

All present agreed that we will contact our local media regarding the support that is available to sufferers of Trigeminal

Neuralgia and related facial pain. We hope this concerted effort in publicising TNA Aus will reach out to more people

and hence bring new blood to the group.

Members began recalling individuals who had come and not come back .... “What happened to .....?”

Allan said “what happened to the man who comes from Newcastle, who wanted to walk to New Zealand?”

Ben : Thanks for thinking of me. Had a quadruple by-pass 2ndApril and after that got pneumonia, am in stitches at the

moment due to some skin cancers being removed and am back in surgery 17Aug for some stents to be inserted into my

legs due to blockages there. Apart from that all is well thanks, so should be able to make an appearance at another

meeting sometime in the future. Regards and hello to anyone who remembers me.

(We do remember you ... especially your desire to walk into the ocean and keep walking...)

We ended the meeting with cuppas and appreciating all the lovely food especially Lois’s salmon sandwiches.

Next meeting: 3rd November St James Parish Hall from 10:AM – till 12:30 PM.

Guest Speaker: Professor Phyllis Butow.

Irene W --------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------

SUNSHINE COAST SUPPORT GROUP. Kawana Library, Nanyima Street, Buddina.

Saturday 21.07.12

Present: Jean W, Teresa M, Max H, Jean B, Peter & Pearl R, Kev H, Barry F, Carol Ann H, Amanda W, Dawn S, Keith C,

Apologies: Ellen B, Josef A, Joanne B, Jill LeM.

New Members: Special welcome to Kev & Keith. It’s great to see everyone again.

Phone reports:

Val W rang from the Gold Coast. She has had an MVD but was a little concerned about some of the side effects. Jean

went through them and told her that she had had the same problems. They went with time. If she was concerned it

would be best for her to go back to her Doctor or take Dr. Dexter’s offer up and go back down to Sydney.

Joanne B is seeing Dr. Dexter on the 16th August.

Financial: Balance as of this meeting Credit $126.35.

General business:

The winning ticket for the TN raffle was sold at our last meeting.

Sad news. Neil Westbrook (Support Group Leader Feb 05-Nov 07) past away during the week. A tragic tractor

accident, a huge hole has been left with his passing. He was a respected member of the local community and the

Christian radio broadcasts. Neil was instrumental in the early days of the Sunshine Coast Support Group. A

condolence card was circulated and signed by members. It will be forwarded to his wife Pauline & family.

Trigeminal Neuralgia Association Australia Page 6

Reports:

Max: Still isn’t taking any medication. He has had a slight twinge now and then – he feels good. Max developed a rash

from Tegretol. Jean referred to an old newsletter regarding a reaction to Tegretol. Photos show the rash and blisters that

can develop. The newsletter was circulated.

Peter R: been really great. He saw Dr. Dexter for a check up 1 month ago. Results- he is perfect. Fantastic news, Peter

has had a rough trot.

Ann H: Taking Lyrica (1 per day). Lately, she has had a burning pressure and has had to increase her medication (2 per

day). Ann went for a second opinion. Has seen various dentists. She is going to start Tegretol.

Barry: Was on 400mg Tegretol per day. After last meeting he had to increase his dosage. He is now on 400mg per day. It

seems that Barry has a blood vessel around his nerve.

Jill: As Jill wasn’t here Amanda reported on her behalf. Jill had surgery in February. There was a good result with Jill

being drug and pain free. She is very happy.

Amanda: Has been to see Dr. Dexter on February 13th. She found that the MRI had a bad effect on her, e.g. (the

drumming noise). She is on high medications both Tegretol and Gabapentin. The results from the consult and MRI were

both positive and negative. There wasn’t anything touching the nerve. Dr. Dexter concluded that Amanda’s brain has

retained a memory from her pervious injury. Amanda has been referred to Dr. Olsen where she can discuss the

possibility of a balloon compression to all branches of the Trigeminal nerve. Amanda would prefer natural means before

she considers having a balloon compression. The first step would be starting B12.

Kev: New member. About 2 years ago his pain started. The first doctor thought it was his teeth. Second Doctor

diagnosed TN. Kev did some research and decided he didn’t want that. He saw Dr. Schapell, Endep was recommended.

He increased his dosage over 6 months. There was a decayed tooth that was removed and it seems to help ease the pain.

He weaned himself off his meds, but had a knee replacement operation 10 months ago. The TN returned and is

gradually spreading. Kev’s pain is on his right side in his teeth and tongue. He has tried Neurontin but that was too

expensive and is now back on Endep 75mg.

Keith: New member. He had a back tooth removed last year. It was hard to remove the tooth. He had to have 5

injections into the back of his jaw. He is 90% sure that it is what has damaged the nerve. The day after the tooth was

removed, Kev started a new job that entailed travelling. He lost his job due to the pain. He went back to the dentist

where the tooth was packed with cloves and he was told that he had a dry root canal. After three weeks he had an

overseas trip and he was pain free. When he returned to Australia his pain came back. The GP gave him Panadol Forte,

then Endone, Oxycontin and Lyrica. His pain was under control whilst he was working. Keith saw a pain specialist who

changed his medications to Targin 400X2pd. and Gabapentin. Various other medications were suggested. The pain

specialist has diagnosed an Intra Oral Neuropathic Pain (Eagle Syndrome). It is recommended that he have another

scan. That’s the third scan of his head. Keith has had a gutful and doesn’t want to go on all the extra medications. His

pain is on his tongue and inside of the cheek, in one tooth and then it transfers to the top teeth. Our heart goes out to

you in this long struggle to find out what is happening.

Jean B: She is going really well for the last month. Previous to that she was in quite a lot of pain. At the moment she is

taking 900 per day of Gabapentin.

Teresa M: All good since her operation in February 2008.

Jean W: Has had slight pain in her left side. Visited the dentist and there wasn’t a problem with her teeth. Results, she

has great dental hygiene. The pain is in her cheek and has teeth pain. Reminder to one/self, you are doing too much.

Next meeting: Saturday 15th September 1pm.

Close of meeting followed by afternoon tea. The spread looked and tasted fantastic. Thanks for all the effort everybody

and appreciations to Teresa for taking report.

Stay pain free everybody ~ Jean W

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MELBOURNE SUPPORT GROUP Maroondah Federation Estate Ringwood

11 August 2012

Evelyn welcomed everyone to the new venue with a reminder and recognition that our meeting place is still on the land

of the Wurundjeri people. Welcome to new TN patient, Nada B., her husband Les and new guest Glenis B.

Present: (25) Barbara & Rob A.; Gail A.; Audrey B.; Nada & Les B.; Alan & Joy C.; Evelyn & Din D.; Bruce & Dorothy

G.; Richard & Verna H.; Nita & Rob McK.; Beryl & Rob O.; Bill P.; Will & Joan R.; Neil & Joan T.; Jo Z. & her mother

Glenis B.

Apologies: (1) Alf H – unwell, hope you feel better soon, Alf.

Treasurer’s Report: Alan reported that there was a carry forward balance of $997.10, expenses of $16.50, donations at

the last meeting of $30.00, giving the current balance of $1010.60. So carefully has Alan kept the records that he could

report that we had 63 meetings in the previous venue, the Ringwood Room from the founding of the Melbourne

Support Group til the last meeting there in July!

Discussion about use of some funds produced the following decisions:

$200 to be forwarded to TNA to help with costs of Conference 2013;

Some funds to be left available for possible rental of next year’s venue, depending on in-coming Leader and availability

of suitable places;

Rob O. and Jo Z. will work on copy for paid (if necessary) inserts in community newspapers e.g. Seniors newspaper,

Probus newsletters and Over 55s newspaper;

Evelyn to ask Irene about her experience in preparing articles for inclusion in professional journals of doctors and

dentists – maybe professional writer is required; costs to be investigated;

Two sided A-frame for laminated posters to be costed to place outside meeting venue to help attendees and advertise

our presence;

Radio advertising to be costed – some free air time for meeting notices might also be available on community radio

Support Group Leader: Evelyn has given notice that she will retire from the position of SGL at the end of this year so

she outlined some of the duties of an SGL and encouraged everyone to think seriously about taking on this role in 2013

to keep the Support Group going. Good attendance today and new members still coming indicate the need for the

group!

Correspondence: Letter about Support Group workshops sent by Irene was tabled – Evelyn might be able to go but

better if in-coming leader could attend.

Newsletter and books: thanks to Irene for the last two newsletters with interesting articles. The system we had of

buying books to make available to borrowers has not worked as people do not return them. All deposits of books not

returned will now be absorbed into the group’s funds and only one copy of Striking Back will be purchased by the

Support Group to have available at meetings for people to see. It would be good to have details of how/where to order

Striking Back in each newsletter so new people can purchase their own.

Reports from members:

Audrey has recently had an operation on her right eye – gold was inserted into the eye to help control recurring ulcers,

then all but a small section of the eye was stitched closed. Her MVD some years ago had left her face numb and eye

ulcers became a constant problem – this has cleared now since the $1300 worth of gold was put into the area. She is fine

now and even has some sight in that eye but she won’t be going in the geriatric beauty competition. Good to see a

successful outcome Audrey and especially that you have kept your sense of humour through it all!

Jo can now claim she officially has TN! As part of her on-going legal case she saw another neurologist who

recommended a thin cut MRI that led to a diagnosis of TN. She has had two sessions in court, seen well over 30 doctors

and been followed by private investigators. She is in a holding pattern now pending further proceedings. Still has pain

and can’t drive as her medications have all been increased: Lyrica, Tramedol, Endep, Nexiun. Still more blood tests are

required. She has experienced a huge difference as she adjusts to the increased drugs – can now do more small things

and is in a better place than a year ago. When the time comes she will have to go off those drugs slowly. She is forgetful

in daily matters so certainly not able to resume her work as an accountant. Jo’s goal is to be good enough to go to the

conference next year (can’t fly at this stage).

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Verna takes 50 gm of Endep at night – its anti-depressant qualities help her sleep. (Joy takes 150gm Endep a day and

finds it makes her forgetful.) Trileptil costs $50 and couldn’t get it on PBS and couldn’t sleep. An MRI ordered by Dr

Danks showed a blood vessel impacting on the nerve. Her blood pressure is down now and pain is under control. One

of the side effects of her medications is a dry mouth.

Bruce takes 200gm controlled release Tegretol at night so that the side effect of dizziness interfers less with his life. He

still experiences double vision e.g. he noticed horses on TV with 6 legs! - and he is at times unsteady on his feet. When

bushwalking he finds after 6 klms or so that blurred vision increases but decreases after rest. Bruce sucks on B12 tablets

as well as taking Tegretol

Nada first became aware of TN when she experienced aching in the face. The GP repeatedly advised her to take Panadol

(she is diabetic so cannot take aspirin). The pain was so severe she was left crying. Three doctors at her clinic finally had

a discussion and decided to try her on Endep which she’s now been taking for 4 years (1 small yellow tablet at night).

Another recent complication was taking cortisone for a finger that is frozen in a bent position – but this did not go with

her diabetes medication. Nada had an 8 hr operation to remove a neuroma from the middle ear – now totally deaf in

that ear. Some wondered what role this operation or the neuroma might have had in development of TN. When Nada

had spasms of pain on the left side of her face Nada’s dentist wanted to extract teeth and wrote to an oral surgeon but he

advised her to see a neurologist.

Joy will have an MRI at Monash Medical Centre to try and establish the cause of fleeting neural events she’s been

experiencing over the last two years. These leave her exhausted – not caused by blood vessels.

Joan feels a bit better since taking 2 x 1000 mcg/day B12 but still has to be very cautious when eating and cleaning her

teeth as these actions can trigger TN pain.

Barbara found she could not tolerate Nutrition Care brand of sub-lingual B12 but takes 3 x 1000 mcg/day of Herbs of

Gold brand B12.

Beryl has a supplier of B12 in Mount Waverley – Evelyn’s supplier in Glen Waverley has no stock at present.

Thanks to everyone for sharing stories of TN pain management so we can all benefit. Thanks to Neil and Joan for setting

up and Joan and Beryl for the kitchen work that made afternoon tea so enjoyable and thanks to all who brought goodies

to share and to Neil and Beryl for work on the front desk.

Next meeting: Saturday 13 October 2012 –1.30 – 4 00 pm at:

Maroondah Federation Estate, 32 Greenwood Ave Ringwood Mel 49 H10

Evelyn Diradji ---------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------

ADELAIDE SUPPORT GROUP Burnside Civic Centre

29th July, 2012

PRESENT: Grace, Bert, Kevin, Faye, Angela, Kerry, Bob, Jan, Graham, Liz.

APOLOGIES: Sue & David, Ann, Kelly, David K, Gary & Liza S.

FINANCES: Opening Balance $270.73. Interest$0.49, Donations $36.00. Balance $307.22.

Graham welcomed all in attendance.

Referring to the July newsletter Graham informed the group that he and Liz were wishing to step down at the end of the

year. If anyone is prepared to take over, please get in touch with Graham for information and then contact Irene.

Graham and Liz will continue to run the meetings on an ad hoc basis if no one else is available to take over.

MEMBERS UPDATES:

JAN: Unfortunately hasn’t been too well recently. She has had to increase her Tegretol to 4 x 100 mg. slow release daily

after she suffered a massive attack about a month ago which required an ambulance trip to the emergency department.

The day before the attack she had missed one tablet and wondered if that could have caused the attack or the fact she

Trigeminal Neuralgia Association Australia Page 9

had been very cold. Biting into a piece of toast had instigated her attack. She was barely able to give her details to the

000 call and was grateful for her medic alert bracelet when the ambulance men arrived. Her pain was eased slightly

when Penthrax was administered through an inhaler. While in the emergency department she was prescribed

Prednisone. Jan was not admitted to hospital but later saw her GP and spoke to him about the possibility of trying

additional medications, as suggested by Dr. Aggarwal at the recent Adelaide Regional Conference, rather than

continually increasing the one drug. Her GP was unsure!

Jan is reluctant to undergo any surgical procedures but wonders if her Tegretol is becoming less effective or could it

have been the cold weather triggering her attack. Jan does not have a plan should such a severe attack recur apart from

asking her GP to refer her to Professor Aggarwal but there is a long waiting list to see him. Graham wondered if Jan’s

GP could speak to Professor Aggarwal but Jan was not very confident he would do that for her. Jan’s face became sore

and swollen for several days after her attack. Her reaction to the severe pain is to press hard on her cheek and insert her

fingers into her mouth and press hard on her teeth, and she admits that while not really helping subdue the pain, it just

seems a natural instinct to press where it hurts.

Discussion followed regarding the benefit of wearing a Medic Alert bracelet in view of Jan’s experience. Also, of having

details of illnesses, medications, contacts, etc. in a prominent position at home should an emergency situation arise and

you are not able to speak clearly because of pain. Emergency Medical Information Booklets are available from SA

Ambulance Service free of charge. These have magnetic covers which attach securely to your fridge door. (Note: in SA

telephone 1300 136 272 to request a booklet).

FAYE: Considers herself one of the lucky TN sufferers as she does not take any medications for her TN. She does,

however, suffer from Benign Positional Vertigo and wonders if that is a related symptom of TN. She takes Stemetil for

her dizzy episodes. Her neuralgia attacks are unpredictable and usually occur when she eats, however, they seem to

have settled down.

ANGELA: It is now 15 months since her radio frequency procedure by Dr. Z. and she continues to do well. She is

experiencing pin prick sensations occasionally just to let her know it is there quietly in the background. She does not

require any medications. Should her TN come back she can go back to Dr. Z and he can perform a second radio

frequency procedure.

KERRYN: Underwent a second MVD recently when it was found there were 2 more veins compromising the nerve

together with scar tissue from the first MVD. Unfortunately this second operation has not been successful. She is still in

considerable pain but she prefers not to take any medications due to the debilitating side effects they cause. Kerryn

experiences pins and needles at the operation site and numbness in her lips and tongue. She has been told there is little

more that can be done for her. She is now attending the Flinders Medical Centre’s Pain Clinic. Kerryn was given a

“blind fusion” test while at the Pain Clinic, a series of 4 injections, including a placebo, to see what drug, if any, helped

her pain. She was not told what she was receiving but was very aware of the ineffectiveness of the saline injection. She

found Velpro was the most beneficial, which is the same as Epilim. (Grace said she had tried Epilim but it made her

hair fall out.) Kerryn has good support from family and friends and of course the support group. Kerryn stated that if

she knew then what she knows now, she would not have undergone the MVD. A relatively new procedure was

suggested to her where electrodes are attached to the face. She was not too sure what was entailed, the cost, however,

was very expensive. ( Peripheral Neurostimulation (PNS)– I believe~ Irene.)

KELLY: Whilst Kelly was an apology at today’s meeting Kerryn was able to give the group an update on her condition.

Unfortunately her TN has also returned after her MVD. She has been told a second MVD might be beneficial and she is

considering this. She has to wear a full face covering to protect herself from the cold. She is now experiencing pain on

the other side of her face. Kelly has been told she cannot get an appointment with the Pain Clinic until November next

year!! Kerryn & Kelly have another friend who has been diagnosed with TN who has spidery feelings and takes 2 x 75

mg. Lyrica daily which causes her to feel very ‘spaced out’. (It is remarkable how, in a relatively small geographical area, three

young women – friends – all suffer from TN)

BERT: Bert’s TN has also returned. His radio frequency procedure lasted 22 months. He is experiencing an aching jaw

and pain while brushing his teeth although not electric shock pain. He began taking slow release Tegretol again and his

TN has settled down somewhat and is being controlled. He hopes to reduce the Tegretol from 300 mg daily.

Trigeminal Neuralgia Association Australia Page 10

KEVIN: Remains quite well. Occasionally he experiences a slight ache in his jaw. Kevin mentioned that he attends the

RAH Pain Clinic, which he finds really helpful, and he is able to get his medications at considerably lower costs.

Unfortunately there is very long waiting list to get in to the Pain Clinics

GRACE: Feels her TN is getting worse all the time. She has pain in her nose and eye. Also numbness and crawling ant

sensations in half of her tongue. Grace appreciates the support she gets from our meetings as nobody else seems to

understand how she feels. She does not take any medication. She feels cold weather worsens her symptoms. Grace has

had two percutaneous procedures, the first time her pain went and she experienced no numbness, however her pain

returned after 2 years when she had her second procedure which resulted in the numbness. That was 4 years ago. She

is prepared to have an MVD if her pain gets worse.

Graham mentioned that past group member David K had been in touch after spending 2 years overseas, including the

USA where he had undergone a successful MVD, David intends to join us at future meetings.

There was some discussion on the effectiveness of having the nerve cut to stop TN pain. Graham said he is aware of one

TN sufferer who has undergone this procedure three times because it suited his particular situation, however, the

procedure does not give long lasting relief and results in severe facial numbness. As a result of a change to his

circumstances this person is now considering an MVD. Graham then went through the pros and cons of the main TN

surgeries (from the book Striking Back).

It was disappointing that so many members attending today were experiencing worsening, or the return, of their TN

symptoms. Could it be due to the bitterly cold weather we are having? Bert, always one with a humorous outlook

thought someone should invent an electric balaclava. Good one, Bert, we hope you are working on it!!

MEETING CLOSED: 3.45 p.m. Followed with tea, cakes and biscuits.

NEXT MEETING: 2.00pm SUNDAY 30th SEPTEMBER 2012 in the Civic Centre, Burnside Town Hall.

Graham and Liz -----------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------

BRISBANE SUPPORT GROUP 30 Ridley Rd, Bridgeman Down

August 11, 2012

Present: Christine M, Sue R, Neil F, Tony M, Margaret and Colin B, Helen and Rod W, Henry C, Jennifer D, Mary M,

Ken and Kay B.

Apologies: Jeff and Lorraine B, Sallyanne C, Andrew and Mary L.

Our meeting began with a great story from Sue. Just eight days out of hospital after her MVD, she was smiling and TN

pain free. Her surgeon and had explained that the nerve was sitting on a vein and also in contact with an artery. Her

hospital stay was only three nights. She was on 300mg Lyrica and 400mg Tegretol and is now drug free. She stopped all

drugs with no side effects. Her ear does feel as if it is full of water.

Helen also has had an MVD, but performed by another neurosurgeon. She has not experienced the long electric shocks

in the two years since the operation, but has had some pain. Her pain prior to MVD was severe and was not controlled

by drugs. She was drug free two weeks after the MVD.

Ken described his introduction to TN pain occurring one evening at dinner, with the excruciating bolt that suggested

teeth trouble. He had dental x-rays which did not detect abnormalities. Neurologist suggested Tegretol and initially this

worked. He has since added Neurontin. He has also consulted a Sydney pain management specialist and seen Dr

Dexter.

Jenny has had two MVD’s but the pain continues. She also suffers from dystonia and Parkinson’s which complicates the

pain resolution process. She has had a lot of dental work in attempting to eliminate the pain. She has found some relief

using three- monthly botox injections. She also finds self injection of dental anaesthetic useful when pain is really bad.

She did experience a 17 day pain free period following a methylcobalamin injection.

Trigeminal Neuralgia Association Australia Page 11

Henry continues to be completely pain and drug free following commencement of monthly neo cobalamin injections.

Henry had suffered severe TN for ten years and was not controlled by Tegretol. He spends $5 every 3 months for the

three shots and sports a big wide grin at each meeting! Our good wishes to Eilleen who couldn’t be with us.

Margaret is going well at the moment, though pain has flared up on and off over the past few months. She takes

lecithin, B12 tablets and injections. She has now reduced Tegretol down to 300 mg, but has added 100 mg Gabapentin.

Margaret mentioned that a doctor had suggested to her son, who suffers from sleep apnoea, that he could sever the

trigeminal nerve!!

Neil continues with lecithin, flaxseed, honey, and raw cabbage and continues to follow a very healthy lifestyle.

Chris first had TN troubles in 2007 following a very stressful time. She has experienced pain with eating and talking,

and also pain around the eye. Acupuncture has provided some relief. She has also enjoyed remission periods up to six

months. She is currently on 400 mg Tegretol and B12 lozengers. She is seeing a neurosurgeon soon for further comment.

Tony is enjoying a good period and is enjoying teaching.

Mary is shock free!! She is now on magnesium, 400 mg Neurontin and 50 mg Endep at night.

Sincere greetings and wishes to all who couldn’t be with us today.

Gold Coin donation: $35.05

Next meeting: October 13

Tony McPherson

-------------------------------------------------------------------------------------------------------------------------------------------

Laughter is the Best Medicine

Memorable quotes from the London Olympics

“My mother used to tell us in the mornings, 'Carl put on your shoes, Oscar you put on your prosthetic legs ...So I

grew up not really thinking I had a disability. I grew up thinking I had different shoes." ~ South African runner Oscar

Pistorius, nicknamed 'Blade Runner' because he races on carbon fibre prosthetic blades, talks about growing up playing sports with

brother Carl.

“The female body is a masterpiece. Everyone likes to look at the female body, especially in dynamic, athletic sport ."

~ Natalie Cook, gold medallist at Sydney in 2000, defends bikinis in beach volleyball. Esp. Ketogenic diet body

"There are many people who want to start rowing because I have come to the Olympic Games. We will start when I

get back. We just have to wait for the boats to arrive." ~ Wildcard Niger rower Hamadou Djibo Issaka trained for just three

months for the men's single sculls, but never in his landlocked and mostly desert country. Someone should tell him them boats’ been coming to Christmas Island.

"My results come from hard work and training and I would never use any banned drugs. The Chinese people have

clean hands." ~ Chinese swimming sensation Ye Shiwen brushes aside doping suspicions raised after the 16*year*old set a world

record to win the women's 400*metre individual medley. Chinese people always wash their hands- hence the clean hands.

"I said 'The medal is there, we have to take it'. I had a super feeling. I felt something big, but now I feel something

even bigger, a big pain." ~ Injured Swiss cyclist Fabian Cancellara rues a crash in the men's road race.

"'Inspire a generation' is our motto. Not necessarily 'Create a generation', which is what they sometimes get up to in

the Olympic village." ~ London Mayor Boris Johnson extols the "energy and enthusiasm" of the Games' 10,000 athletes, to

whom some 150,000 condoms have been distributed.

"There was no pressure. You should play in my country, then you will see pressure. They throw bricks at you."

~ Croatia's Ivano Balic reacts after his side's handball semi-final defeat by France.

(Compiled by Jason Neely; For all the latest Olympic news go to http://www.reuters.com/london-olympics-2012)

Trigeminal Neuralgia Association Australia Page 12

Trigeminal Neuralgia Association Australia Page 13

2012 Meeting Dates

State Group Date & Time Venue Group Leader/s

ACT

Canberra

TBA

Barbara Byrne Room

Labour Club, Belconnen

Jan Goleby

02 6254 6640

NSW

Sydney

1st December

1:30 – 4:00 pm

Toongabbie Public School

Cnr Fitzwilliam & Binalong Rds

Kim Koh

02 97431279

Kim Smith

Sydney

CBD

3rd November

10am 12:30pm

St. James Parish Hall,

Level ONE, 169 Phillip St.

Sydney CBD

Irene Wood

0413 363 143

QLD

Brisbane

13th October

1.30 -4.00pm

30 Ridley Road

BRIDGEMAN DOWN

Leonie Gall

0407 55 44 07

Tony MacPherson

07 3822 2286

Sunshine

Coast

15th Sept

1:00 PM

Kawana Library,

Nanyima Street, Buddina

Jean Williams

07 54911978

Townsville

TBA

1.00 – 4:00pm

Carville Senior’s Villa

35 – 37 Diprose St

PIMLICO

Sue Macey;

Sera Ansell

07 47516415

S.A

Adelaide

30th Sept

2:00 – 4:00 pm

Burnside Town Hall

Civic Centre

Cnr Portrush/Greenhill Rd

Graham/ Liz Boyer

08 8392 2781

TAS

Hobart

25th August

2:00 – 4:00 pm

Glenorchy Library

Enter via Barry and Cadell

Streets

Helen Tyzack

03 6245 0429

Ros Wilkinson

03 6234 7989

VIC

Melbourne

13th October

1.30 – 4:00pm

Maroondah Federation Estate,

32 Greenwood Ave

RINGWOOD

Evelyn Diradji

03 9802 6034

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Contact: TNA Australia P O BOX 1611, CASTLE HILL, NSW 1765 Australia Tel: 02 4579 6226;

Email: tna_sydney@yahoo.com or irene.wood@tnaaustralia.org.au