Radiosurgery Centers of Excellence

Having explored the surgical options, I am contemplating whether I should take the lowest risk option - non-invasive radiosurgery - for this TN, when it comes time for that.

In my web research I came across this really useful guide to radiosurgery - a website by the "International RadioSurgery Association" - an independent organization, has dedicated itself to providing educational information and guidelines on stereotactic radiosurgery for brain tumours and brain disorders to governments, regulatory agencies, insurers and referring physicians.

One of the really useful resources they provide is a guide to Centers of Excellence around the world - wished I'd found it earlier :-(

Lists of a few things

I think all TN sufferers learn what to do and what not do in order to avoid getting an attack or to alleviate an attack. We learn this more by personal experience than hard science. And some of the things we try work some of the time, but not all of the time. None the less, we try them anyway - when we get an attack, we run through our complete repertoire of alleviation strategies like conditioned rats, 'coz anything is better than that demonic pain.

The following are not exhaustive lists, but just a few of the things I have tried:

Things I have found helpful to prevent an attack

Besides the usual medications, I have found the following to be helpful, especially in the early stages of the disease:

• Monotonous exercise, e.g., walking on a treadmill, cycling on a stationary bicycle;
• Leaning on my opposite elbow to the side which has the pain;
• Relaxing in a bar;
• Avoiding carrying heavy items with the hand on the same side as the pain;

Triggers causing an attack

The following have been triggers at various times during my TN:

• Tip of the nose;
• Top lip;
• Teeth;
• Tongue/inside of mouth;
• Talking/eating/drinking (connected with previous triggers);
• Rubbing my nose;
• Drying my face/head with a towel;
• Carrying heavy items with the hand on the same side as the pain;
• Breathing through my nose.

Things I have found helpful during an attack

I have found the following to be helpful during an attack, especially in the early stages of the disease:

• Immediately stopping whatever I am doing;
• Dropping whatever I have in my hands;
• Staying perfectly still;
• Not breathing;
• Trying to relax, making sure that I am not clenching my teeth in tension;
• Pressing with my finger at the base of my skull above the nape of my kneck on the same side as the pain, whilst simultaneously tipping my head backwards.

Emotional Freedom Techniques

I've been reading about "Emotional Freedom Techniques" (EFT) - an emotional version of acupuncture except needles aren't necessary. Instead, you stimulate well established energy meridian points on your body by tapping on them with your fingertips.

According to EFT:

"The cause of all negative emotions is a disruption in the body's energy system."

And because our physical pains and diseases are so obviously connected with our emotions:

"Our unresolved negative emotions are major contributors to most physical pains and diseases."

I am sceptical of some the claims, but the last statement about "unresolved negative emotions" rang true.


Here's a video about EFT:

Feeling good

I think the higher dose (1200 mgs per day) of tegretol has finally clicked in. I feel pretty good today. Just a few twinges but no big spasms. Of course, I am avoiding rubbing my face (e.g., when drying myself after a shower - that reminds me - did I have a shower today?) 'coz I know that will cause a spasm. But the important thing is that I am not getting any spontaneous spasms. And at last - I can eat and drink. Still don't know if I can talk - haven't tried that - still living like a recluse.

I am noticing some things which might be side-effects of the high dose of tegretol.

• Bad memory - just now I couldn't remember whether or not I had taken a shower. Don't laugh - this is serious. I had to go and feel my face cloth to check if it was wet. It was, therefore I must have taken a shower.
• Drowsiness - yesterday I just had to go to sleep in the middle of the afternoon - I was so drowsy. Today I had great difficulty getting up - about three hours after the normal time I get up.
• Joint pains - I have a neck pain that I think is totally unrelated to the TN. It feels like a stiff neck - as if one has been sitting in a draft. Also, the arthritis in my left knee seems worse.
• Spelling - my typing on the computer keyboard is all over the place - keep hitting the wrong keys.

But I don't really care about any of these. Anything is preferable to that demonic pain.


However, I still have to determine what to do as regards operating on the tumour. Here's a possibility - a positive story about a revolutionary alternative to traditional open-brain surgery and/or daily radiation treatments. The new Leksell Gamma Knife Perfexion™ instead uses focused doses of radiation without making a single incision to treat malignant and benign brain tumors and other brain disorders.

You can read more about my fight with an acoustic neuroma in my About Acoustic Neuromas blog.

The visit to the neurosurgeon

Had an interesting session with the neurosurgeon today. In his opinion, it is unlikely that the tumour is causing the TN as it is only 3cms whereas they are usually 4cms before they interfere with the trigeminal nerve. He feels that it is more likely compression of the nerve by a blood vessel that is causing the TN. So I now have two things to be dealt with.

About 1 person in 100,000 gets an acoustic neuroma. And about 1 person in 100,000 gets TN. So what are the odds of someone getting both?

I need to have the acoustic neuroma operated on at the same time that they do a microvascular decompression - making for a very long and complex operation - if it is all done surgically.

So now I have to find out about all the possibilities for the two operations - Gamma Knife, endoscopic microvascular decompression, etc. Need to weigh up the risks and the benefits of each procedure.

Interesting the cards that life deals us eh? And how things can change so dramatically in the space of one week.

You can read more about my fight with an acoustic neuroma in my About Acoustic Neuromas blog.

Back to the neurologist

I got a call from the neurologist's secretary. Instead of going in tomorrow as originally scheduled, he wanted to see me today - urgently. Of course, this could only mean one thing - bad news.

I went straight away. I had to wait in the waiting room whilst the scheduled patients had their turns. Finally, an hour later, I went in. He said that he had called me to come in straight away because the MRI scan was "not normal". He then went through the six or so films showing me a growth in my head - a vestibular schwannoma (otherwise known as an acoustic neuroma).

A vestibular schwannoma is a noncancerous (benign) tumor that develops adjacent to your brain on a portion of the eighth cranial nerve, which runs from your brain to your inner ear and controls balance and hearing. Although it is one of the most common types of brain tumors, these tumors are still rare, occurring in about one person in 100,000. For a good article on vestibular schwannomas see:
http://www.emedicine.com/ent/fulltopic/topic239.htm#section~Workup

The tumour was clearly visible on my films, especially the ones in which the contrast dye had been used. As the neurologist said, it was "shining like a Christmas tree light". He felt that it was this that was causing the TN.

His secretary made an appointment for me to see a neurosurgeon in two days time (Friday) so that I could have the diagnosis confirmed and discuss the options.


Here is a story of a young fashion model who, after struggling with one misdiagnosis after another, finally discovers the truth: she has a large acoustic neuroma. The following journey would either save her life or end it in the process.



You can read more about my fight with an acoustic neuroma in my About Acoustic Neuromas blog.

The MRI scan

Monday - MRI-day!!

My MRI scan was scheduled for 9.00am. I thought I might go on from there into the office as I felt fairly good.

I was apprehensive about the MRI scan of course. Wasn't sure what to expect. I visualised that I would be almost totally enclosed by the machine. But that wasn't the case. They provide a mirror above you so that you can see out of the scanner into the room, and through the window where the medical staff are. That's good coz it makes you think you have lots of space whereas in reality your head and shoulders are really enclosed in a little area. They provide ear plugs coz of the noise of the scanner.

They did a scan for about 30 minutes, during which time I actually just about went to sleep. The scanner stopped - but they left me lying in the MRI. Then I saw the female medic pointing to the screen and discussing with another male medic. Then they came in and the medic said they wanted to give me an injection of something to make the image of whatever they had found clearer on the scanner. I could hardly hear what they were saying coz of the ear plugs. So then I had another 15 minutes of scanning.

I was hoping that this scan would indicate exactly where the blood vessel was pressing on the trigeminal nerve. I was fairly sure that nothing else would be found. But during the scan, I had a bad feeling about it - the way they pointed at the computer screen and talked animatedly and then came to give me the injection of the contrast dye before doing another scan. I was now certain they had found something. Most likely a tumour.

Strange how when you think of a brain tumour, you immediately think of a cancerous one and immediately think the worst.

I didn't go into the office afterwards. During the afternoon I got more and more depressed. I walked on the beach and asked why this should happen to me now. Just when I had finally found happiness in a wonderful relationship, why should it be snatched away? I realised that I was starting to wallow in self-pity, so I decided to do a web search of the things they might have found.

I guess trying to self-diagnose using the Internet and based on little evidence is not always a good idea. In my case I felt much more positive about my future after I had done my search. It seemed to me that given all my symptoms, if I did have a tumour, then it was likely to be an acoustic neuroma - a benign tumour that causes deafness (which I certainly had in my right ear) and in some cases can cause TN.

This made me feel much better....

Visit to the neurologist

Today the pains are bad - really bad. The frequency and severity of the attacks has increased over the last few days. I can hardly move without triggering an attack. I have found that pushing my finger on my neck at the base of my skull whilst simultaneously pushing my head back and to the left provides some relief. I have done this so much now that my neck is bruised and painful.

I have to go to see the neurologist today.

It is clear that I cannot drive like this, so I send an email to a colleague to drive me there. When he arrives, I slowly and carefully walk down the steps with my head pushed back. Every step causes a spasm. Clearly, vibrations are now triggers. I get into the car and indicate with my hand that I cannot speak. He drives slowly, avoiding the many potholes and bumps, and finally we arrive at the clinic. We make our way slowly to the office.

I whisper my name to the secretary of the neurologist. She gives me a form to fill-in. Even writing with the pen triggers more attacks. I have the feeling that the other people in the waiting room are staring at me as I sit unshaven, unwashed, with my head in a strange position and a miserable expression on my face - but I don't care. We are so strongly conditioned to "appear" in a certain way in public - but this terrible pain strips away all that social conditioning.

Finally I am called in to see the neurologist. He can see that I am in pain when I try to talk and so he couches his questions such that I can answer in single words. He confirms that I am indeed suffering from TN and says that I should have an MRI scan as soon as possible. He prescribes an immediate increase in my dose of tegretol - from 400mgs to 800mgs per day.

The secretary makes the appointment for the MRI for next Monday, March 3rd. Given that the previous person was told that they would have to wait until the following Friday, there was clearly some urgency indicated in my case.

The following video captures how we sufferers feel about trigeminal neuralgia and gives good images of the most used surgical procedure (bit gory - so be warned):

The rise and fall of pain relief

I had a whole week of very little pain whilst spending a week with my girlfriend in the USA. Heaven.

Then today, returning home, I came down the steps of the aircraft and onto the tarmac. I took two steps and pow!!! A series of searing pains hit me and wouldn't stop. I just stood there on the tarmac holding my head, pressing the back of kneck, trying all the strategies I had tried before to alleviate the pain. None seemed to work. Tears filled my eyes, my face burned. Airport workers came up to me to try to help. I couldn't speak to them. If only they could see what was happening inside my head. They brought a wheelchair. I slowly shook my head to refuse it. Somehow I felt that sitting down would not help. I felt that sitting in a plane for several hours was a partial cause, as I could feel occasional twinges during the flight. "Must walk" - I thought.

Finally, the spasms stopped. The airport staff insisted that one of them accompany me to immigration - policy I suppose. Slowly we walked in silence to immigration.

After a silent taxi ride, I arrived at my flat - well, not quite. I still had three flights of stairs to negotiate. By this time I had worked out that the attack might have been triggered (somehow) by me carrying my laptop case in my right hand. I now had two cases to carry up these three flights - so I took them one at a time, in my left hand, slowly up to my flat.

The acupuncturist and the dentist

On February 4th I had taken three tegretol tablets starting in the afternoon as soon as the doctor had given the go ahead to come off the Lyrica. So by the next day, I think that increased dose was already improving things in that the attacks, though still occurring, were not sustained/repeated spasms and not as violent. I actually ate (more like gulped without letting it touch the front of my mouth or tongue) a bowl of porridge in the morning without too much pain. And I was managing to drink easier - all I had been able to drink all the day before was two cups of warm milk - couldn't manage anymore, so was quite dehydrated as well.

So I am already feeling a little better on February 5th as I sit in the waiting room of the acupuncturist with about four other people. It is clear from all the wall charts that this person is not just an acupuncturist - he also practices chiropractic, kinesiology, natural medicine and clinical nutrition forms of health care. Altogether - a holistic natural health care.

I guess because this was the first meeting with the acupuncturist, there were no needles - just tests. He said he couldn't cure the TN 'coz I'd had it so long, but he thought he could alleviate it. He thought one problem might be an uneven bite so he asked me to go for a "bite test" with a dentist first. So no relief - in fact aggravation 'coz during the consultation I realised that I still couldn't talk without causing the pain - and he asked me to bite on a stick - and wow!! did that hurt.

Took me awhile to calm down when I got back home. Was still shaky - part of the problem was I had very little and only intermittent sleep the night before - which I later realised was probably the withdrawal symptoms of coming off the Lyrica.

The next day I went to see the dentist. An interesting "holistic" sort of dentist - the first question he asked me was - what was I feeling guilty about or not communicating. He said it was time to let it go and that we punished ourselves far too much. Interesting thought that connected with my friend's comment about "unresolved issues". But I thought that all my issues had been resolved. I now had a new love in my life - someone with whom I shared so many interests and who was a really good friend as well as a lover.

The dentist pressed his finger against my jaw joint and asked me to open my jaw. Bolts of lightening shot through my head. I sat up in the dentists' chair and held my head, panting short breaths through my mouth, tears in my eyes. After a minute they subsided and slowly I relaxed again. He then attended to making the mold for the orthodontic splint.

For the next week or so, the acupuncturist or "natural health care specialist" increased the number of visits. Finally, February 15 was the day for real serious treatment - but not pins. Instead his female assistant used a laser on the same points - temple, eyes, left ankle, wrists, ear lobe and tip. Not sure why I get laser rather than pins - but if it works, who cares?

Change of medication

At the end of January 2008, I wondered if I had now developed the "atypical" type as well as the "typical" type of TN. Not only did I get a violent spasm when the trigger was touched (or in some other way activated, e.g., talking and eating) - which is the typical TN - but I also had a continuous dull ache and minor spasms which were not triggered by anything. These latter seemed to be worst when I tried to sleep - hence little sleep at night. And then next day when I yawned, I triggered a typical (violent) spasm - can't win :-)

February 2, 2008 - the attacks were getting more frequent, longer and more severe. I didn't think that the severity of the bolts of lightening could get any worse - but they did. So I went to the doctor again. He took me off tegretol and put me on Lyrica.

Two days later, the attacks were even worse. I called the doctor and he said I should go back on the tegretol. So I decided to leave work to get my tablets. But on the way out of my office I had a bad attack when greeting a colleague in the front office. It lasted for at least a minute after which time I was red, shaking and had tears in my eyes. I had to just sit in the front office for about five minutes. Then I moved to my boss's office to let her know I was going home and had another shorter attack when I tried to speak. So I sat in her office recovering for about five minutes whilst she found the name and address of an acupuncturist. Took me about another hour in my office to recover enough to walk cautiously to my car and drive home.

The next day I went to the acupuncturist.

Multiple electric shocks

It was mid-November 2007 when I got really scared. I had just checked into a hotel in order to attend some meetings. I carried my suitcase and laptop case up the stairs to my room, bent down to place them on the floor and as I stood up a series of electric shocks hit me. I wasn't touching any part of my face so they seemed to be spontaneous, and what is worse - they wouldn't stop. I cried out in pain and dropped on the bed clutching and pressing my head. After what seemed an eternity, but in reality was probably only a minute, they stopped.

I remained perfectly still on the bed, not daring to breathe or move. I tried to think calm thoughts to slow my racing pulse. Slowly I calmed down and started to breathe again. Then, without me moving at all - another series of electric shocks hit me. I gripped my head tight and tried to calm down. Tears came in my eyes, my nose filled with mucus, but after a minute the pains stopped again. I laid for awhile panting short breaths through my mouth like a dog.

I no longer just felt scared - I felt terror. What if the next series of excruciating pains didn't stop? I was beginning to understand why they call this the "suicide disease". I very carefully got up from the bed and cautiously began walking on the spot and around the room for about 20 minutes (this was something that I had discovered sometimes helped). All the time I was breathing through my mouth and taking care not to bend or look down or up.

I knew that I couldn't go to the meeting later that afternoon. And I had just taken the last half tablet of tegretol. I knew I had to communicate with someone to get help. But I couldn't talk on the telephone and I didn't dare go outside the room. Cautiously I set up my laptop and emailed a friend and colleague, but discovered he wasn't in town. So I emailed the people I was supposed to meet, explaining the situation. They offered to help. Without any real expectation that they would be able to manage it, I asked them to try to get tegretol for me - and within half an hour, they emailed that they had got it and would deliver it to the hotel shortly. Suddenly things were looking brighter.

Then, just as suddenly, I had another electric shock - though not multiple. But this time I realised that it was because I had breathed through my nose. So that was the trigger - breathing through my nose. And the multiple electric shocks were because at the first one I would inhale sharply through my nose, thereby causing a sequence of spasms. Anyway, I got up and started walking around the room - breathing through my mouth - and that eased it. Got to keep walking .......

Now that I knew what the trigger was for this TN episode, I felt a lot happier. Bending down and lifting things with my right hand also seemed to bring it on - but that might have been because when doing those things I breathed through my nose more energetically.

And so this is the reason that I sometimes walk around with tissue stuffed up my right nostril.

Living with TN

Were all the issues resolved? Not sure. Not that I had any really serious episodes between December 2006 and February 2007 - but I did have this weird pain in my tongue which seemed to me to be a remnant and a constant reminder that they might come back. And sure enough, they did. This time it was cleaning my teeth that triggered it. So I finally gave in and accepted that I must start taking the tegretol.

And so it started - a small daily dose of tegretol to try to keep these terrible pains at bay. I felt really tired for the first few days, but that soon passed. Then in mid-March I felt constant pain in my teeth. So I went to the dentist and she identified a suspect tooth (or two) that might have a dead or dying nerve. She gave me a course of antibiotics which she said would determine if this was the case and hence if this was causing the pain I was feeling. As it turned out, one tooth did have a dying nerve and rather than risk any further pain (and likely triggers for the TN) I asked her to extract it. It seems that many TN sufferers have teeth removed in the early stages. Amazing how we all go through the same thought processes. Under different circumstances we might have tried to save the teeth, but with the fear of triggering further electric shocks, and also the hope that this might be the "cure", we get them extracted. In any event, the pain in my teeth continued even after the extraction. Of course, it wasn't toothache at all - it was TN masquerading again.

In those early days, the pains (both the lesser background pains and the violent electric shocks) went away completely for short periods and I would actually stop taking the tegretol for a week or two. But then they would return - and even when they didn't, there was the terrible feeling of dread, of anxiety, that at any moment a violent attack was going to start. The slightest twinge in the face created terror - and this was how it went for most of 2007.

Unresolved issues

Today I made a booking to see a neurologist - finally. The appointment is for February 28. Should have done this a long time ago. But before we get to that, I was telling the story of how it all started.

So, back in October 2006 when I first learned that I had TN, after a week or so, the pains went away again. And so once more I didn't make a big fuss about it when I saw the doctor for my regular check-up. Big mistake. But you feel rather stupid saying "Well, I had this pain that was triggered by a drop of water hitting my nose, but it has gone now".

Somehow, you feel awkward telling anyone about this excruciating pain that has no apparent external cause, because you feel as if they're going to look at you as if you're crazy. You feel as if they're saying "Yes - it's all in your head - maybe you should see a psychiatrist instead of a doctor".

I have often wondered how close to the truth this is. At the end of 2006, a colleague and good friend came to visit. I was telling him about my facial pains one day and he commented "Unresolved issues mate" (he is Australian). His point was that many of our physical health problems have their origins in mental and emotional states. His theory for these pains of mine was that I had unresolved issues that must be worked through before I could hope to get any release from the pain. Of course, he knew that I was going through a marriage break-up at the time - so one can see how he would arrive at that conclusion.

Strange thing is - that is exactly how it seemed to play out. By December, my wife and I had agreed an amicable separation. And the pains stopped ... or so I thought.

There was life before TN

So, as I prepare to impersonate a pin-cushion, I think "Why me? Why do I get these terrible electric shocks that are destroying my quality of life? And most importantly, will this visit to an acupuncturist get rid of the pain?"

It all started just over four years ago towards the end of 2003 - but I didn't know it was trigeminal neuralgia - never heard of it. Most people haven't. Not surprising really given that only 1-5 people in 100,000 suffer from it. Put another way, about 1 million people worldwide suffer from it - so at least I'm one-in-a-million :-)

I stepped into the shower and as the water hit me, a bolt of lightening shot from the tip of my nose to the top of my head - POW!!! What the hell was that? I touched my nose - POW!!! I had no idea what was happening, but I finished my shower without letting the water touch my nose. And for the rest of the day I tried to avoid touching my nose - but have you noticed how when you know you shouldn't do something, you have a fascination with doing it? I would keep touching it - just to check if it still hurt - it did. And then it would itch and I would touch it again.

Next day it had gone. And all was well until about 6 months later. But this time the sensitive spot was just above my top lip. So I walk around with stubble on my top lip that day. Next day - same problem. But next day - gone. And so it went .. months would pass between each bout, and each time the bout would get a little longer and with a different trigger point each time - but always on the right hand side of my face.

I now understand that this sort of occasional appearance of the pain in the early stages is fairly normal for TN sufferers. But at that time I had no idea what was happening. Each time I put it down to tiredness, or working too long on the computer, or the stress I was feeling in my work and personal life at the time - and because I never seemed to have the time, I never went to see the doctor about it.

At one point the pain seemed to come from my teeth. So this time I made time and I went to the dentist. She identified a couple of minor fillings and then said "Well - the good news is that your teeth are fine. The bad news is that they're not causing the face pain".

In October 2006, I suffered a really sustained bout that rendered me unable to eat or talk without pain. I was dining with a group of colleagues. Well - they were dining - I was merely trying to eat some food without too much pain. Suddenly I got a bolt of lightening, whinced and stopped eating. The colleague to my left (who just happened to be a psychiatrist) asked what was wrong. I tried to explain - and he immediately said "Sounds like you're suffering from trigeminal neuralgia". "So, can it be treated?" I asked. "Yes" he said "you can take tegretol".